The Dane County Almanac Weblog

Letter to the editor

2012-02-07T01:41:00.000-06:00

As a patient advocate for mental health reform I want to alert readers and mental health consumers to the recent action by the American Psychiatric Association to use trademark and intellectual property rights to unfairly repress and censor individuals and the concerned public from being informed and engaged in the process of revising the current Diagnostic Statistical Manual (DSM5).

Inasmuch as this manual is used to diagnose and assign a psychiatric diagnoses label to citizens seeking mental health care and for the purpose of complying with federal and state insurance laws, and inasmuch as this process affects mental health policy and the amount and use of scarce public and private mental health resources, this process needs to be totally transparent and open to the public.

If you agree, please contact the Wisconsin Council on Mental Health and/or your local branch of Wisconsin’s National Alliance on Mental Health.

For more information Google DSM5/Psychology Today, or follow this issue on my blog: danecountyalmanac.blogspot. com.

William R. Benedict, Madison
DSM revision

New Mental Health Model is Good News

2011-06-27T11:29:00.000-05:00

There is a new intellectual framework recently arrived within the psychiatric profession that will dramatically affect the way we will think about mental health in the decades ahead. It’s called “interpersonal neurobiology.”

In this new mental health science our mind is seen as being derived from the interaction of the brain and interpersonal processes, especially in our early development. Because this new science is more broadly based on both biological and social science research, it becomes a much more integrated medical discipline. The present molecular or psycho-pharmacological emphasis alone is no longer sufficient.

Perhaps the most significant and salient finding from recent neural science research is best expressed by the principal architect, Dr. Daniel J. Siegel, in Mindsight – The New Science of Personal Transformation. Siegel states:

“Interactions with the environment, especially relationships with other people, directly shape the development of the brain’s structure and function.
There is no need to choose between brain or mind, biology or experience, nature or nurture. These divisions are unhelpful and inhibit clear thinking about an important and complex subject: the developing brain.”

While our genes remain an important component of our mental functioning, developmental factors are also significant and continue throughout the life span. For example, recent neural research, including the latest brain scanning technology, shows that learning produces physical alterations both in gene expression, brain structure and functioning. Thus human interaction both shapes and is shaped by an ever-changing and dynamic brain throughout life.

The corollary is that heredity alone does not necessarily need to be perceived as a permanent condition and that human experience throughout the life span has the potential to modify, neutralize and repair both constitutional and psychosocial determinants. Such life-long brain plasticity findings can bring hope to millions who are seeking healing and daily transformation.

These latest neural findings have long-term mental health policy and funding implications for persons suffering with serious chronic mental diseases. With modern brain scanning technology and ever-increasing neural evidence that supports an ever-changing brain ---whether psychopharmacological and/or psychosocial therapeutically induced --- it now becomes morally necessary to consider scheduling major periodic psychiatric and/or neurological exams for persons suffering from “chronic” mental illness.

Persons suffering from “chronic” mental disorders should not be stuck with old dead-end and long-term diagnoses but regularly and comprehensively reviewed in the light of these latest neural science findings.

That not all schizophrenic patients need to be on antipsychotics all their lives was recently rigorously demonstrated in Dr. Martin Harrow’s fifteen year old long-term, evidenced based, outcome study conducted at the Illinois College of Medicine.

Based on 68 young patients, and using global assessment scales at three year intervals, forty percent of those off medications recovered over the long run compared to only five percent of those still taking antipsychotics.

These research findings, presented at the 2008 American Psychiatric Association meeting, are presented in both readable and graphic form in Robert Whitaker’s “Anatomy of an Epidemic,” along with fourteen other long-term, evidenced based, outcome study findings which further support Harrow’s findings.

This will be welcome news to younger patients and their parents, and will bring hope especially to our youngest love ones.

Mental health policy makers and practitioners who are in search of a more open, holistic and balanced mental health model will also find both Siegel and Harrow’s work a valuable addition to their therapeutic literature.

Readers can learn more at Mindgains.org and MindsightInstitute.com
and at Robert Whitaker’s Psychology Today’s blog.

Benedict is a family mental health reform advocate

New Mental Health Paradigm is Good News

2011-06-18T09:43:00.001-05:00

Capital Times, Saturday, June 18, 2011

There is a new intellectual framework recently arrived within the psychiatric profession that will dramatically affect the way we will think about mental health in the decades ahead. It’s called “Interpersonal Neurobiology.”

In this new mental health science our mind is seen as being derived from the interaction of the brain and interpersonal processes, especially in our early development. Because this new science is more broadly based on both biological and social science research, it becomes a much more integrated medical discipline. The present molecular or psycho-pharmacological emphasis alone is no longer sufficient.

Perhaps the most significant and salient finding from recent neural science research is best expressed by the principal architect, Dr. Daniel J. Siegel, in Mindsight – The New Science of Personal Transformation. Siegel states:

“Interactions with the environment, especially relationships with other people, directly shape the development of the brain’s structure and function. There is no need to choose between brain or mind, biology or experience, nature or nurture. These divisions are unhelpful and inhibit clear thinking about an important and complex subject: the developing brain.”

While our genes remain an important component of our mental functioning, developmental factors are also significant and continue throughout the life span. For example, recent neural research shows that learning produces alterations in gene expression and in our synapses. Thus human interaction both shapes and is shaped by an ever-changing and dynamic brain throughout life.

The corollary is that heredity alone does not necessarily need to be perceived as a permanent condition and that human experience throughout the life span has the potential to modify, neutralize and repair constitutional determinants. Such life-long brain plasticity findings can bring hope to millions who are seeking healing and daily transformation.

These latest neural findings have long-term policy and funding implications for long-term mental health care of persons with serious chronic mental diseases. With modern brain scanning technology and ever-growing neural evidence that supports an ever-changing brain -- whether psycho-pharmacological and/or psycho therapeutically induced -- it now becomes morally necessary to consider scheduling major periodic psychiatric and/or neurological exams for persons suffering from “chronic” mental illness.

Persons suffering from “chronic” mental disorders should not be stuck with old dead-end and long-term diagnoses but regularly and comprehensively reviewed in the light of these latest neural science findings.

These findings presented in readily readable form, will be welcome news to those who daily suffer from mental disorders and their families, and for mental health practitioners who are in search of a more open and holistic and balanced therapy strategy.

Readers can learn more at Mindgains.org and MindsightInstitute.com.

Benedict is a family mental health reform advocate.

New book changes the conversation on mental illness: Long-Term Mental Health Outcome Follow-Up Studies Surface

2011-05-16T00:09:00.003-05:00

(This review of Robert Whitaker’s latest book is primarily focused upon the long-term mental health outcome studies identified in his book, see Part Three: Outcomes: Chapter 6 (Schizophrenia) A Paradox Revealed, Chapter 7 (Anxiety) The Benzo Trap, Chapter 8 (Depression), An Episode Illness Turns Chronic, Chapter 9 (Bipolar), The Bipolar Boom, Chapter 11, The Epidemic Spreads to Children. Also see Notes: pages 368 – 384.)

Introduction

Welcome to this presentation this morning. Much of what I will share with you today can be found in Robert Whitaker’s latest book, Anatomy of an Epidemic – Magic Bullets, Psychiatric Drugs and the Astonishing Rise of Mental Illness in America.

Whitaker is an investigative medical reporter and has written one other book on this same topic. It’s called Mad in America. Some of the studies contained in Whitaker’s latest book also appear and are discussed in Mad in America. Maybe some of you have heard of both of these books. How many of you are familiar with either of them?

With respect to Anatomy of an Epidemic, I am convinced that Whitaker makes a strong case that indeed there is an epidemic of chronic disabled mental health patients, actually over four million, who have been diagnosed with a mental disability sufficient to be eligible for government assistance. Every day 1,100 adults and children are added to these rolls because they have become newly disabled by mental illness. Of this number 250 of these citizens are children. Using SSI and SSDI and other epidemiological data he argues that this epidemic is now spreading most rapidly among our nation’s children.

I am not here this morning however to try and persuade you to accept Whitaker’s admitally controversial chronic epidemic thesis --- in part because there is not enough time to do so, and because it would seriously detract from and compromise the larger long-term research studies presented in his book. Many readers of this book will argue that perhaps the greatest contribution to the mental health and medical research literature is Whitaker’s systematic documentation and grouping of the scientific long-term outcome studies by the four major mental disorders and for children.

As noted on my bio my expertise and experience includes thirty years as a clinical and program evaluator. I have conducted and have had published several papers on both clinical and program evaluation studies of my own, including an 18 month follow-up study on emotionally disturbed adolescents who were treated in a Wisconsin residential treatment facility.

During these three decades as a professional mental health clinician and evaluator I have tried to keep up on mental health research of all kinds. In fact it was due to such training and experience that my own interest was piqued when Whitaker’s recent book appeared. I just happened to have the good fortune to hear Whitaker interviewed about his book on Wisconsin Public Radio and I was both dismayed and confused when Whitaker began citing several long-term mental health outcome studies which until then I didn’t know even existed. Needless to say I bought the book and here I am.

Before turning to our very first long-term outcome follow-up study I suggest that we begin by comparing what you will hear today with the story presented by the American Psychiatric Association and large pharma. This latter story is one that we all know. It is a story that begins after WW 2 with the experimentation with certain chemical compounds or substances like dyes and their various reactions on caged rats. These various compounds were soon used on humans as an anesthetic in surgery to calm the patient.

Using rats and mice scientists observed that various compounds produced certain effects or behavior in these animals. Some substances produced less hyperactivity, greater calmness and manageability. By 1955 an antipsychotic drug called Thorazine appeared on the market for humans.

American psychiatry and pharmaceutical companies soon began to credit this drug with ending the suffering of the chronically ill and for making deinstitutionalization possible. The APA touted this drug as our first antidote to a mental disorder. One writer haled Thorazine for initiating a revolution in psychiatry, comparable to the introduction of penicillin in general medicine. This was the start of the psychopharmacological revolution. Now all of us are familiar with the story told by big pharma. It is a story that began with the National Institute of Mental Health’s first drug trials what was later called the magic or silver bullet era that now is regularly stoked with ever newer miracle drugs. About this same time the Diagnostic and Statistical Manual also appeared and drew a line as to what is normal and what is not. Also during this early period there was the need to discover and demonstrate an antibiotic-like pill that would “treat the brain by curing chemical imbalances that causes mental disorders.” Slightly before and during the same time period something called “community psychiatry” which was threatening to redefine American psychiatry and vigorously opposed by a more conservative branch of the AMA.

During this same period there was also pressure on the psychiatric profession to adopt a more rigorous research design in order to increase its scientific credibility. They chose a research design that had been recently used and proven in infectious disease: studies which included placebo-controlled, double-blind, randomized clinical trials. Thorazine came on the market over a half century ago in June of 1951 to treat psychotic disorders.

Whitaker asks the reader to compare this idealized and more sexy version of American psychiatric history with a more realistic and candid story told by the numerous long-term mental health outcome studies that his book has just recently brought into public light, and presented to you here today.

Chapter 6: A Paradox Revealed

This story, told in the narrative of long-term scientific studies, really begins when the National Institute of Mental Health was asked to design and conduct the first Thorazine drug trials and evaluate its safety and effectiveness. Here it would be helpful to first consider briefly the difference between Food and Drug Administration’s approved clinical drug trails versus long-term mental health outcome follow-up studies.

As you know, most clinical drug trials are designed to run for as little as four to six weeks, while long term follow-up studies might run for up to one to ten years or more. Unlike clinical trials which target only clinical symptoms typically observed during the intake or initial office visit, such as anxiety, depression, mental confusion, long-term follow-up studies are more likely to use global rating scales and broader and more concrete social functioning indicators such as employment, family relationships, relapses, physical health and medication status.

And, while clinical trials use more narrow industry-driven rating scales often routinely administered by the treating clinician themselves to rate the patient’s progress, long-term outcome studies tend to use several different broad social functioning measures and are rated by more independent and objective verification sources, who are usually, not involved in the treatment or clinical process per se.

Now, what does the long-term scientific mental health evidence tell us with regard to the treatment of schizophrenia with antipsychotic drugs?

In 1961 the Psychopharmacology Service Center using symptom-based rating scales in short term placebo studies researcher found 75 percent of the drug-treated patients to be “much improved” versus 23 percent of the placebo (non-medicated) patients.

Following this study hundreds of smaller studies have since produced similar results. Sixty-six such short-term studies were reviewed and found that 53 percent of the drug withdrawn patients relapsed within ten months versus 16 percent of those maintained on the medications. These results prompted the researcher to conclude that “The efficacy of these medications in reducing the risk of psychotic relapse has been well documented.” 1995 See: NIMH investigators, and Patricia Gilbert, “Neuroleptics withdrawal in schizophrenic patients.”

Later in 1967 the NIMH’s conducted a one year after discharge follow-up study with 299 schizophrenia patients who had been treated with either neuroleptics or placebo upon their admission to a hospital.

In this landmark study the researchers found that patients who received placebo “were less likely to be re-hospitalized than those who received any of the three active phenothiazines.” See: Schooler, N. American Journal of Psychiatry, 123 (1967):986-995.

After this study the researchers described these results as “ so unexpected” but stated that despite these findings, they “were unprepared to recommend placebo as the treatment of choice.”

This study was soon followed by NIMH’s first two relapse studies.

The first such study investigated whether relapse rates increased in direct relation to dosage. The critical finding of this NIMH funded study was that relapse rates rose in direct relation to dosage—the higher the dosage that patients were on before the drugs were withdrawn, the greater the relapse rates.

At the start of this study, 18 patients were on placebo, and only one got worse over the next six months (6%). Sixty-five patients were on 300 mg. of chlorpromazine at the start of the study, and 54% of these patients got worse after drug withdrawal. One hundred thirteen patients were on more than 300mg. of chlorpromazine at the start of the study, and 66% of these patients got worse after drug withdrawal. See: Relapse in Chronic Schizophrenics following Abrupt Withdrawal of Tranquilizing Medication, Prien, R. British Journal of Psychiatry, 115 (1968) 679-86.

In the second relapse study, the earlier finding that relapse rates rose in correlation with neuroleptics dosage was confirmed. Only 2 of 30 patients who were on placebo at the start of the study relapsed during the next 24 weeks (7%). Twenty-three percent of the 99 patients who were on under 300 mg. of chlorpromazine at the start of the study relapsed following drug withdrawal. Fifty-two percent of the 91 patients who were on 300 to 500 mg. of chlorpromazine at the start of the study relapsed following drug withdrawal, and sixty-five percent of the 81 patients who were on more than 500 mg. of chlorpromazine at the start of the study relapsed following drug withdrawal.

The researchers concluded: “Relapse was found to be significantly related to the dose of the tranquilizing medication the patient was receiving before he was put on placebo—the higher the dose, the greater the probability of relapse.” See: Discontinuation of Chemotherapy for Chronic Schizophrenics, Prien, R. Hospital and Community Psychiatry, 22 (1971), 20-23.

It seems paradoxical that drugs that ameliorate acute psychotic symptoms over the short term will actually increase the likelihood that a person diagnosed with schizophrenia will become chronically ill. But as we have just seen, that disturbing fact showed up in the very first outcome studies presented here.

In 1997 Ross Baldessarini of Harvard Medical School reviewed 145 of such clinical trials and found that the antipsychotic proved superior to a placebo in 83 % of them. The Brief Psychiatric Rating Scale (BPRS) adopted by the American Psychiatric Association was regularly employed in these trials. The APA eventually decided that a 20 percent reduction in total BPRS score represented a clinically significant response to a drug. Based on this measurement, an estimated 70 percent of all schizophrenia patients suffering from an acute episode of psychosis “respond” over a six week period, to an antipsychotic medication.

Once the NIMH investigators determined that the antipsychotics were efficacious over the short term they naturally wanted to know how long schizophrenia patients should stay on the medication.

To investigate this question, they ran studies that, for the most part, had the following design: Patients who were good responders to the medication were either maintained on the drug or abruptly withdrawn from it.

In 1995, Patricia Gilbert at the University of California at San Diego reviewed sixty-six relapse studies, involving 4,365 patients and found that 53 percent of the drug-withdrawn patients relapsed within ten months versus 16 percent of those maintained on the medication. Gilbert concluded that “The efficacy of these medications in reducing the risk of psychotic relapse has been well documented.” It was later discovered after repeating this study that when the drugs were gradually withdrawn, the relapse rate was only one-third as high as in the abrupt-withdrawal studies.

Based on these relapse studies, in a 2002 John Geddes, a prominent British researcher, wrote in an article in the New England Journal of Medicine, “Anti-psychotic drugs are effective in treating acute psychotic symptoms and preventing relapse.

Nevertheless, in 2007 the Cochrane Collaboration, an international group of scientists that doesn’t take funding from pharmaceutical companies, raised questions about the drug’s short-term efficacy.

They conducted a meta-analysis of all chlorpromazine-versus placebo studies in the scientific literature, and after identifying fifty of decent quality, they came to the following conclusion: (Most briefly, a meta-analysis study is one that combines the results of several studies that address a set of related research hypotheses. In the simplest form, this is normally by identification of a common measure effect size, for which a weighted average might be the output of a meta-analysis.)

They calculated that seven patients had to be treated with chlorpromazine to produce a net gain of one “global improvement” and that even this finding may be an overestimate of the positive and an underestimate of the negative effects of giving chlorpromazine.” These investigators noted that they were startled by their results. This was the first attempt to assess the long-term efficacy of these drugs when a long-term measure was applied.

Even if one accepts the objectivity of this clinical trial procedure many investigators have pointed to the large hole in this evidence base. Joseph Zubin warned that when it came to evaluating a therapy for psychiatric disorder, a six-week study induced a kind of scientific myopia.

“It would be foolhardy to claim a definite advantage for a specified therapy without a two-to five-year follow-up. A two year follow-up would seem to be the very minimum for the long-term effects.

Lisa Dixon, psychiatrists at the University of Maryland School of Medicine in 1995 went still further in her criticism. “Little can be said about the efficacy and effectiveness of conventional antipsychotics on nonclinical outcomes.” Well-designed long-term studies are virtually nonexistent, so the longitudinal impact of treatment with conventional antipsychotics is unclear.

After reviewing a robust number of such clinical trial results, Whitaker noted, “Evidence that the drugs might worsen long-term outcomes showed up in the very first follow-up study conducted by the NIMH, and then it appears again and again in the research literature over the next fifty years. Some of these researchers include: J. Cole, 1977, Bockover 1975, Rappaport 1978, W. Carpenter 1977, L. Mosher 2003, C. Harding 1994, M. Harrow 2007, World Health Organization 1998

Evidence that long-term recovery rates are higher for non-medicated patients appears in studies and investigations of many different types. It shows up in the randomized studies conducted by Rappaport, Carpenter, and Mosher; in the cross-cultural studies conducted by the World Health Organization; and in the naturalistic studies conducted by Harding and Harrow.

Once a new tool for studying brain structures came along called electro-magnetic resonance imagery (MRIs), investigators discovered that antipsychotics fail to maintain or increase the size of the frontal lope and the white matter found there. These morphological changes in the brain reflect a “progressive neurodevelopmental disorder” in the schizophrenic patient which is associated with negative symptoms and both cognitive and functional impairments, which antipsychotics fail to arrest. (See: Nancy Andreason, American Journal of Psychiatry, 2003.

Whitaker makes the point that for the most part, the psychiatric researchers who conducted these studies hoped and expected to find the reverse. They wanted to tell a story of drugs that help schizophrenia patients fare well over

Conclusion - Now to summarize, what does the long-term scientific mental health evidence tell us about the record of antipsychotic medication for the treatment of schizophrenia?

1.Beginning in 1961 using symptom-based rating scales in short term placebo studies researcher found 75 percent of the drug-treated patients to be “much improved” versus 23 percent of the placebo (non-medicated) patients.

Following this study hundreds of smaller studies produced similar results. Sixty-six such short-term studies were reviewed and found that 53 percent of the drug withdrawn patients relapsed within ten months versus 16 percent of those maintained on the medications. See: NIMH investigators, and Patricia Gilbert

2. The first 1967 one year-after hospital discharge study found that patients who received placebo (non-medicated) “were less likely to be re-hospitalized than those who received any of the three active phenothiazines. See: N. Schooler

3. In two drug withdrawal trials, both of which included patients who weren’t on any drug at the start of the study, relapse rates rose in correlation with drug dosage. The higher the dose the greater the probability of relapse. See: R. Prien

4. There is no good evidence that antipsychotics improve long-term schizophrenia global outcomes. See: Lisa Dixon and Emmanuel Stip

5. There is significance evidence that drugs might worsen long-term outcomes. See: Cole, Bockoven, Rappaport, Carpenter, Mosher, Harding, and the WHO.

6. There is long-term evidence that antipsychotics affect the brain, and why the drug-withdrawal studies have misled psychiatrists into believing that the drugs prevented relapse. See: Chouinard and Jones

7. There is long-term evidence research that randomized placebo studies show that recovery rates are higher for non-medicated patients. See: Rappaport, Carpenter, Mosher

8. There are long-term studies that indicate that drugs induce global brain dysfunction in a high percentage of patients over the long term. See: the tardive dyskinesia studies by

9. There is also evidence that antipsychotics cause morphological changes in the brain and that these changes are associated with a worsening of both positive and negative symptoms, and with functional and cognitive functioning as well. See: Andreasen MRI studies

10. There is long-term evidence showing how schizophrenic patients in the US are faring following their hospitalization. See: Martin Harrow’s NIMH funded 2007 fifteen-year follow-up global outcome study showing that 40 percent of schizophrenic patients off antipsychotics recovered, versus 5 percent of the medicated patients.

At the 2008 APA conference Harrow stated: I conclude that patients with schizophrenia not on antipsychotic medication for a long period of time have significantly better global functioning outcomes than those on antipsychotics.”

(There is long-term evidence-based study that demonstrates that seven patients had to be treated with chlorpromazine to produce a net gain of one “global improvement.” versus a mere symptomatic short-term benefit. See: The 2007 Cockrane Collaboration.)

Chapter 7: The Benzo Trap

When Hoffmann-La Roche brought Valium to the market in 1963, advertising it in particular to women, and from 1968 to 1981, it was the bestselling drug in the Western world. Valium was preceded by Miltown which was often referred to as “mother’s little helper.” During this same period the number of people admitted to mental hospitals, psychiatric emergency rooms, and mental health outpatient clinics soared.

First discovered by George Beard in 1869 he described the condition as ”tired nerves” and defined the symptoms as consisting of worry, fatigue, and insomnia. He later also named the condition “neurasthenia.” Sigmund Freud first began treating neurasthenia in 1895 and soon announced that Beard’s disease of dread and worry were psychological in origin rather than tired nerves. He began to write about anxiety neurosis in women which he theorized arose in a large part form their unconscious repression and sexual desires and fantasies. Until the onset of Benzodiazepines psychiatry was a profession for those who treated mad patients in thee asylum.

Once researches in the United States and the United Kingdom determined that Benzos did not provide any durable relief from anxiety, an obvious question arose: Do these drugs when taken on a continual basis, worsen the very symptoms they are supposed to treat? In 1991 Karl Rickels at the University Pennsylvania School of Medicine reported on a three year follow-up study. Rickels reported on a group of anxious patients and found that those who had successfully gotten off the drugs were doing “significantly” better than those who had failed to so.

A few years later he was back with another study and found that when long-term users withdrew from Benzos, they became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.

Soon Canadian investigators found that benzo usage led to a fourfold increase in depressive symptoms. In England Aston observed that those who stay on the drugs tend to become more ill. Many patients find that anxiety symptoms gradually increase over the years despite continuous benzo use, and panic attack, agoraphobia may also appear for the first time. David Knott, a physician at the University of Tennessee, warned in 1976 that, “I am very convinced that Valium, Librium and other benzo drugs of that class cause damage to the brain. He discovered damage to the cerebral cortex which appeared to become a permanent condition. Other adverse symptoms of Benzos include trouble focusing, rembering things, learning new material and solving problems.

Chapter 8: An Episodic Illness Turns Chronic

Although a handful of European physicians may have sounded the alarm about the changing course of depression in the late 1960s and early 1970s, it wasn’t until 1994 that an Italian psychiatrist, Giovanni Fava, from the University of Bologna, pointedly announced that it was time for psychiatry to confront this issue. Neuroleptics had been found to be problematic over the long term, the benzodiazepines had, too, and now it looked like the antidepressants were producing a similar long-term record. In a 1994 Editorial in Psychotherapy and Psychosomatics, Fava wrote:

“I wonder if the time has come for debating and initiating research into the likelihood that psychotropic drugs actually worsen, at least in some cases, the progression of the illness which they are supposed to treat. In several more articles that followed, Fava offered a biological explanation for what was going on with the antidepressants. Like antipsychotics and benzodiazepines, these drugs perturb neurotransmitter systems in the brain. This leads to compensatory processes that oppose the initial acute effects of a drug…” When drug treatment ends, these processes may operate unopposed, resulting in appearance of withdrawal symptoms and increased vulnerability to relapse. A statistical trend suggested that the longer the drug treatment, the higher the likelihood of relapse, Fava noted.

Fava also wondered what was the outcome for people who stayed on antidepressants indefinitely. Weren’t they also relapsing with great frequency? He summed up the problem in this way:

“Antidepressant drugs in depression might be beneficial in the short term, but worsen the progression of the disease in the long term, by increasing the biochemical vulnerability to depression. Use of antidepressants drugs may propel the illness to a more malignant and treatment unresponsive course.”

Finally, Scott Patten, from the University of Calgary, plumbed a large Canadian health database to assess the five-year outcomes of 9,508 depressed patients, and he determined that the medicated patients were depressed on average nineteen weeks each year, versus eleven weeks for those not taking the drugs. These findings, Patten wrote, were consistent with Giovanni Fava’s hypothesis that, “antidepressant treatment may lead to a deterioration in the long-term course of mood disorders.

Returning to someone closer to home, William Coryell and his NIMH-funded colleagues studied the six year “naturalistic” outcomes of 547 people who suffered a bout of depression and they found those who were treated for the illness were three times more likely than the untreated group to suffer a “cessation” of their “principal social role” and nearly seven times more likely to become “incapacitated.”

Whitaker presents several demonological and long-term studies relating to the second generation of antidepressants or SSRIs. Here due to both time and space I will cite just one of the long-term studies by J. Moncrieff. “Trends in sickness benefits in Great Britain and the contribution of mental disorders. Both in the United States and in Great Britain scientists observed that following the arrival of the SSRIs, the number of citizens disabled by depression dramatically increased.

In Britain the number of days on incapacity due to depression and neurotic disorders jumped from 38 million in 1984 to 117 million in 1999, a threefold increased.

Chapter 9: The Bipolar Boom

Do antidepressants worsen the long-term course of bipolar disorder?

Frederick Goodwin and Robert Post’s latest book, Manic Depressive Illness, which is considered the bible in the field of bipolar disorders. At the 2008 APA conference, Goodwin gave this bottom-line summary.

Bipolar outcomes had noticeably worsened in the past twenty years. He went on to tell why. Today, we have a lot more rapid cycling, a lot more lithium resistance, and a lot more lithium treatment failures than there was previously. Regrettably today that most bipolar patients get an antidepressant before they ever get exposed to a mood stabilizer.

Nassir Ghaemi, from Tufs Medical Center agreed that antidepressants can cause manic switches and turn patients into rapid cyclers, and may actually increase the amount of time they spend in depressive episodes. He went on to say that the literature tells us that “the number of episodes is associated with more cognitive deficits. ”We are building more episodes, more treatment resistance, more cognitive dysfunction, and there is data showing that if you have four depressive episodes, unipolar or bipolar, it doubles your late life risk of dementia. Long-term outcomes for bipolar disorder have dramatically worsened in the pharmacotherapy era.

In Robert Whitaker’s segment on, Bipolar Before Lithium, he summarized it best. “Given what the scientific literature revealed about the long-term outcomes of medicated schizophrenia, anxiety, and depression, it stood to reason that the drug cocktails used to treat bipolar illness were not going to produce good long-term results.

The increased chronicity, the functional decline, the cognitive impairment, and the physical illness, all of these can be expected to show up in people treated with a cocktail that often includes an antidepressant, an antipsychotic, a mood stabilizer, a bensodiazepine, and perhaps a stimulant, too.

Chapter 10: An Epidemic Explained

We are now coming to the close of our examination of the long-term outcomes literature for the major psychiatric disorders for adults. I would like to leave with you the fifteen year long-term findings for manic depressive patients conducted by Martin Harrow from 1975 to 1983. Harrow followed four different groups: Schizophrenia on meds, manic-Depressive on meds, schizophrenia off meds, and maniac-depressive off meds. Here briefly were his findings:

Over the long-term, the manic depressive patients who stopped taking psychiatric drugs fared pretty well. At the end of two years, they were still struggling with their illness. Then they began to improve, and by the end of the study their collective scores fell into the “recovered” category on Harrow’s global assessment scale. The recovered patients were working at least part-time, they had acceptable social functioning, and the were largely asymptomatic.

In contrast the manic depressive patients who stayed on their psychiatric medications did not fare so well. At the end of two year they remained quite ill, so much so they were now a little bit worse than the schizophrenia patients off meds. Then, over the next two and one half years, while the manic-depressive and schizophrenia patients who were off meds improved, the manic-depressive patients who kept taking their pills did not, such that by the end of 4.5years, they were doing markedly worse than the other three groups.

We all know that schizophrenia is the worse mental disorder with the worst long-term prognosis. Nevertheless in this long term NIMH-funded study, the manic-depressive group on medications had the worse long-term outcomes. While their counterparts who were off medication fared the best at the end of this fifteen year study.

Chapter 11: The Epidemic Spreads to Children

I would like to conclude this review of the psychiatric literature this morning by now turning our attention to our children. The prescribing of psychiatric drugs to children and adolescents is a recent phenomenon, as relatively few youth were medicated prior to 1980. This will also give us the opportunity to put Robert Whitaker’s thesis to the same test as we have applied to the four previous major disorders. Will we find, in the scientific literature and in societal data, that the medicating of children and teenagers is doing more harm than good? Is it putting many children who initially may be struggling with a relatively minor problem---a disinterest in school, or a bout of sadness – onto a path that leads to lifelong disability?

The diagnosing and medication of mental disorders for our children with depression was nearly nonexistent until Prozac and other SSRIs were brought to market and touted as wonder drugs. The percentage of children so medicated tripled between 1988 and 1994, and by 2002 one in every forty children under nineteen years of age in the US was taking an antidepressant.

Fifty years ago, physicians virtually never saw manic-depressive illnesses in preteens, and they rarely diagnosed it in adolescents. Suddenly pediatricians and psychiatrists began prescribing Ritalin to hyperactive children, and suddenly the medical journals began running case reports of manic children. This problem grew as the prescribing of Ritalin increased, and then it exploded with the introduction of the SSRIs.

Research has since showed that both of these drugs trigger bipolar symptoms in children and adolescent cents on a regular basis. Whitaker concludes that these are the two outside agents fueling the epidemic. It should be remembered that they do perturb normal brain function. The manic children showing up at hospital emergency rooms have dopaminergic and serotonergic pathways that have been altered by the drugs and are now functioning in an “abnormal” manner.

There are no good studies yet on the percentage of “early onset” bipolar patients who, when they reach adulthood, end up on the SSI and SSDI disability rolls. However the astonishing jump in the number of “severely mentally ill” children receiving SSI speaks volumes about the havoc that is being wreaked. There were 16,200 psychiatrically disabled youth under eighteen years old on the SSI roles in 1987, and they comprised less than 6 percent of the total number of disabled children. Twenty years later there were 561,569 disabled mentally ill children on the SSI rolls, and they comprised 50% of the total.

This epidemic is even hitting pre school children . The prescribing of psychotropic drugs to two-year olds and three-year olds began to become more commonplace about a decade ago, and sure enough, the number of severely mentally ill children under six years of age receiving SSI has tripled since the, rising from 22,453 in 2000 to 65,928 in 2007.

Twenty years ago, our society began regularly prescribing psychiatric drugs to children and adolescents, and now one of every fifteen Americans enters adulthood with a “serious mental illness.” Continuing to quote Whitaker, “The medicating of children has now become commonplace only a short time ago, and already it has put millions onto a path of lifelong mental illness.”

Now having reviewed the mental health outcome or evidenced-based literature let me conclude by saying a few things that these outcome studies have to say. First we have learned that antipsychotic drugs can help patients better manage their most acute symptoms early in the onset of the disorder.

(The conclusion of this paper will briefly highlight the most significant findings contained in these long term outcome studies for each of the four major disorders and for children. This paper remains a work in progress.)

Robert Whitaker Book Review Group Meeting Re: Long-term mental health patient outcomes

2011-04-13T02:49:00.002-05:00

MEETING MINUTES

Meeting Place: Wisconsin Family Ties

Participants present: Jackie Baldwin, Paula Buege, Mike Bachhuber, Bill Benedict, Lori Krinki and Joann T.Stephens. Donna Wren, was unable to attend, but agreed to share her comments about: Robert Whitaker’s book, Part 3, Chapter 6 soon.

Bill began this meeting by thanking all those present for taking on this assignment and for their attendance. Special thanks were given to Paula for helping to arrange the best date for this meeting and to Lori for providing the meeting location and telephone hookup.

The first forty-five minutes of the meeting went by much too quickly as we each took turns talking about our reading assignment, but it was well worth it. Several points of concern and questions helped us considerably to better clarify this advocacy project’s much narrower mission: To help inform all Wisconsin Council on Mental Health members of the importance of long-term mental health patient outcome findings, and using this knowledge when reviewing policies/grants and best practice service standards. (For those interested, below I have also added a summary of this reading assignment.)

Following the discussion members gave attention to the project’s July 30, 2011 timetable which called for Council action on his request by July 30, 2011. While Bill expressed thanks and appreciation for Council cooperation thus far for what has already been accomplished to date, including both his two Council meeting visits and presentation to both the Adult Quality and Policy and Legislative Committees, however, he expressed concern with the progress made to date.

While the earlier discussion of Whitaker’s book was enthusiastic and compelling, efforts to identify what Council action might be most effective proved to be more challenging. The following member suggestions were considered: 1.) conduct more awareness- raising educational opportunities for Council members. Perhaps a panel discussion and Q&A meeting at a Council meeting; 2.) Ask Bill to present a concise summary of long-term study findings for each of the four major mental disorders and ADHD, 3) Establish a long-term patient outcome sub-committee composed of members from each of the Council Committees to be a resource and advisory group to the Council., 4) Prepare a Council letter supporting greater attention to long-term patient findings to the Department and funding sources.5. The Council would recommend to the Department IT Unit long-term patient functioning indicators to be including in the existing service information system; Finally, 6.) recommend that this project be referred outside the Council to a state-wide patient peer organization.

With respect to the latter suggestion, Bill noted that after again carefully reviewing the Council’s mission and membership make-up that he was more than ever convinced that this patient advocacy project belongs with the Wisconsin Council on Mental Health.

Group members agreed to report back to their respective Committees on this meeting and the suggestion presented: Meeting closed at 3 PM

The following is a summary review of the reading content discussed by group members:

(In order to share the nature of the reading content discussed, please note below the summary contained in Chapter 6, “The Case for Neuroleptics” and their effectiveness in the short-term and long-term. Whitaker states that “Once these anti-psychotic drugs were proven to be effective in the short-term, attention soon turned to determining, how long schizophrenia patients should stay on the medication?

To investigate this question, they ran studies that, for the most part, had this design: Patients who were good responders to the medication were either maintained on the drugs or abruptly withdrawn from them. Many such studies were done and showed good results with 53 percent of the drug-withdrawn patients, relapsed within ten months versus 16 percent of those maintained on the medication.

Based upon this research, an investigator summarized these findings this way: “The efficacy of these medications in reducing the risk of psychotic relapse has now been well documented.” Furthermore, as late as 2002 John Geddes, a prominent British researcher, wrote in the New England Journal of Medicine, “Anti-psychotic drugs are effective in treating acute psychotic symptoms and preventing relapse.”

Whitaker however claimed he saw “a hole in this evidence,” and cites another prominent investigator of the New York State Psychiatric Institute, Joseph Zubin who earlier in a 1956 conference warned that when it came to evaluating a therapy for a psychiatric disorder, a six-week study induced a kind of scientific myopia. It would be foolhardy to claim a definite advantage for a specified therapy without a two to five-year follow-up,” he said. (Please note the attachment which gives the differences between a clinical trials study versus a long-term study.)

Now with respect to the hole in the evidence, an investigator, Liza Dixon, at the University of Maryland School of Medicine in 1995, goes on to add that “Little can be said about the efficacy and effectiveness of conventional antipsychotics on non-clinical outcomes. Well-designed long-term studies are virtually nonexistent, so the longitudinal impact of treatment with conventional antipsychotics is unclear.”

As late as 2002 an editorial in European Psychiatry, a professor of psychiatry at the University de Montreal, Emmanuel Stip had this to say: “After fifty ears of neuroleptics, are we able to answer the following simple question: Are neuroleptics effective in treating schizophrenia/” There was, he said “no compelling evidence on the matter, when ‘long-term’ is considered.”

Out of the following context Whitaker, after reviewing medical and scientific journals going back over fifty years, then goes on to agree that there is no long-term data to be reviewed. Whitaker is not easily satisfied however, and goes on to say that “it is in fact possible to piece together a story of how antipsychotics alter the course of schizophrenia. He suggests that the story to answer this question begins, quite appropriately, with the NIMHs follow-up study of the 344 patients in its initial nine-hospital trial.

Most briefly, this NIMH study found that regardless of what treatment they had received in the hospital, they were not faring so badly. At the end of one year, 254 were living in the community, and 58 percent of those who according to their age and gender, could be expected to work were in fact employed. He then notes, that at this very first moment in the scientific literature, there is the hint of a paradox. “While the drugs were effective over the short term, perhaps they made people more vulnerable to psychosis over the long-term, and thus the higher re-hospitalization rates for drug-treated patients at the end of one year.

Partly as a result of these findings, soon the NIMH investigators were back with another surprising result. In two drug withdrawal trials, both of which included patients who weren’t’ on any drug at the start of the study. Relapse rates rose in correlation with drug dosage. Only 7 percent of those who had been on a placebo at the start of the study relapsed, compared to 65 percent of those taking more than five hundred milligrams of the chlorpromazine before the drug was withdrawn. “Relapse was found to be significantly related to the dose of the tranquilizing medication the patient was receiving before he was put on placebo---the higher the doses the greater the probability of relapse,”)

Out of the above summarized context Lori did however begin our group’s discussion with a question relating to the validity and usefulness of findings derived from a retroactive study by two psychiatrists at Boston Psychopathic Hospital---J. Sanbourne Bockover and Harry Solmon. In their study they found that 45 percent of the patients treated in 1947 at their hospital hadn’t relapsed in the next five years and 76 percent were successfully living in the community at the end of that follow-up period.

In contrast, only 31 percent of the patients treated at the hospital in 1967 with neuroleptics remained relapse-free for five years, and as a group they were much more “socially dependent” on welfare and needing other forms of support. They concluded, that their extended use (neuroleptics) in aftercare may prolong the social dependency of many discharged patients. Part of Lori’s concern had to do with the two comparison groups used and the appropriateness of the two very different follow-up dates.

(Why do we need more and better long-term mental health patient follow-up studies: They may help us to more objectively and better determine what forms of care are strongly associated with fewer relapses, or with higher global functioning scale results. Or they may provide us with more and better information about what is the optimum dosage and duration of care for different diagnostic mental health populations? How do long-term continuous medication regimens compare with more episodic or as-needed medication practices?

Finally, we may be able to better determine what kinds of mental health outcomes are correlated with economic independence, physical health, quality of life satisfaction, family and community engagement, and mortality rates.)

Respectively submitted,

William R. Benedict
Mental Health Patient Advocate

Reply From WI DHS

2011-02-14T02:48:00.002-06:00

State of Wisconsin
Department of Health Services

February 14, 2011

Mr. William R. Benedict
Madison, WI 53704-5107

Dear Mr. Benedict:

Thanks you for your letter and your interest in informing the Wisconsin on Mental Health about Robert Whitaker’s book, “Anatomy of an Epidemic.” You noted that the book outlined the research regarding the long-term impact, cost and repercussion of reliance on prescription drugs to treat mental illness.

You note in your letter that you believe that the Council members, who include patients and family members, would be the best to review the findings of Mr. Whitaker’s book because they have the fewest conflicts of interest. At this point, the Council has not yet recommended to the Department further action or additional consideration of the book’s findings.

I agree with you that our Department should use every means possible to become more efficient and effective and use the latest data and research to promote the most cost-effective treatment approaches that will improve outcomes for people who have a mental illness. I appreciate the information that you have provided and thank you for binging this to my attention.

Sincerely,

Dennis G. Smith
Secretary

Project Update - Letter to new Secretary of the Wisconsin Department of Health Services

2011-02-02T14:29:00.003-06:00

Secretary Dennis Smith
Department of Health Services
1 West Wilson Street
P.O. Box 7850
Madison, WI 53707

February 2, 2011

Re: Wisconsin Council on Mental Health Action Recommendation

Dear Mr. Smith:

Congratulations and the best of luck in your new position. What follows is my effort to maintain the continuity and support for a modest project that is now in process. I hope it will accomplish much and at the lowest possible cost to Wisconsin taxpayers.

I am a retired social worker and worked for many years as the program evaluation specialist for Lutheran Social Services of Wisconsin and Upper Michigan.

In July of last year I wrote a letter to the then Sec. Karen Timberlake and alerted her to the recent book by Robert Whitaker called Anatomy of an Epidemic. I informed her that in spite of my many years in mental health research, only after reading Whitaker’s book did I become aware of the fifty or more evidenced-based long-term mental health outcome studies and their findings therein.

Most briefly, these long-term study findings ---several funded totally or in part by the NIMH ---consistently showed that mental health patients treated continuously on a strong drug regimen usually did less well than those treated primarily with fewer drugs and with a range of psychosocial therapies.

My recommendation to Ms. Timberlake simply called for members of Wisconsin’s Council on Mental Health to become as knowledgeable as possible of these latest evidenced-based long-term study findings, and in light of their own findings, consider there implications for the for the Division’s current mental health policies and practices. Presently my proposed recommendation to the Wisconsin Council on Mental Health has been assigned to the Council’s Legislative and Policy Committee.

Considering the challenges that all Wisconsin taxpayers now face along with a staggering deficit and an ever faltering economy I believe our health department should use every means possible to become more efficient and effective.

One way to do this is to simply take look at the latest scientific mental health long-term research study findings contained in Whitaker’s book but largely kept from the public’s eye until now.

My recommendation to the Wisconsin Council on Mental Health envisions a completion date by July of this year and a small volunteer committee of interested Council members to read and review at least a sample of the most significant long-term studies, and then weigh these findings in the context of one or more programs within the Division.

Who better than patients or family members of patients to compare these new long-term outcomes findings with Wisconsin’s existing mental health policy and practices? Who could serve with the fewest conflicts of interests or be any fairer than Council members whose primary mission and commitment is to monitor Wisconsin’s mental health program performance and make recommendations for improvements

To help contain both the members’ time and resources I hope the July deadline will be met. As an incentive for organizational representatives to purchase this book I have allocated $300.00 out of my own budgeted resources to help organizations defray their expenses for the cost of the book.

I hope this update will be useful. Your comments would be most welcome and appreciated. For more information about this advocacy project see my blog:
danecountyalmanac.blogspot.com.

Most respectfully yours,

William R. Benedict, MSW

See: Gov. Scott Walker, Sen. Scott Fitzgerald, Rep. Jeff Fitzgerald, Sen. Mark Miller, Rep. Joe Parisi, John Easterday, Jackie Baldwin, Judy Wilcox, Geoff Greiveldinger, Lania Syren, Marc Herstand, Jan Greenberg, Diane Greenly, Marc Herstand, Michael J. Fitzpatrick

Presentation to the Wisconsin Council Mental Health’s Legislative and Policy Committee

2011-01-28T17:04:00.001-06:00

January 13, 2011

First, a brief update re my letter to the Secretary of the Department of Health

First, let me begin by saying how pleased I was to learn that your Committee was chosen to consider my recommendation and to report back your findings to the Council. I thank you and I am so pleased to be here this afternoon.

On July 23, 2010 I wrote a letter to the Secretary of the Wisconsin Department Health, Ms. Karen E. Timberlake. In this letter I briefly shared my professional qualifications and experience relating to evidenced-based, long-term mental health outcome studies. I noted that in spite of this professional training and some thirty years of experience, Robert Whitaker’s latest book, Anatomy of An Epidemic, shocked and surprised me (For the full text of the letter, including my recommendation for action, to the Secretary, please see my blog: Danecountyalmanac.blogspot.com).

In this book, for the first time, Whitaker brings into public view over fifty evidenced-based and scientific long-term mental health outcome studies about what actually occurs to those treated for mental illness in the United States. This story is quite different than what the public media has given us until now. This story is framed from dozens of archival scientific mental health research studies beginning in the 1950s to the present. They are cogently summarized and documented (See Chapter 6: A Paradox Revealed).

Because Whitaker tells his story through the prism of evidenced based scientific long-term mental health outcome results, this Legislative and Policy Committee can draw its own conclusions about these studies, including your recommendations regarding their implication for Wisconsin’s mental health program. Based upon these scientific studies Whitaker asked and chose to write about some of the following questions:

“During the past fifty years when investigators looked at how psychiatric drugs affected long-term outcomes, what did they find? Did they discover that the drugs help people stay well? Function better? Enjoy good physical health? And, are long-term recovery rates higher for medicated or un-medicated patients with serious mental health disorders?

I am convinced that Robert Whitaker’s book will be this century’s definitive
evidenced-based repository and source when people gather to discuss long-term outcome evaluation studies.

I believe that with your help, that hereafter mental health researchers and other stakeholders will use and refer to this text whenever they turn their attention to the latest scientific findings having to do with long-term mental health outcome study findings. Hereafter when ever questions of long-term treatment efficacy are raised in mental health care, researchers and administrators, and all stakeholders, the world over, will turn to Whitaker’s book. Certainly most of us are aware that Wisconsin has led the country in timely patient-centered mental health reform in the past.

Because I feel so strongly about this, I have requested that Wisconsin’s Council on Mental Health become informed of this long-term evidenced-based information and reconcile them with existing practice and funding policies and with their future long-range planning for this state’s mental health system.

To continue as usual in the face of the overwhelming evidenced contained in these scientific long-term outcome studies would be ethically and professionally irresponsible. These evidenced-based outcome study findings demand that all mental health stakeholders, but especially this citizen council, our Governor’s oversight body, carefully consider these findings and document their own findings and recommendations in response to their own study of these study findings.

Most of all, each day that mental health stakeholders delay in informing themselves regarding these latest scientific findings is another day wasted before we reexamine our present care and treatment practices and funding policies against these latest research findings.

As a patient advocate what also concerns me most is that we can no longer continue to follow treatment practices as usual if we find this evidence to be compelling and actionable.

Finally what are we going to say to our youngest mentally ill patients, when and if, they discover down the road that this long-term information existed, and that we should have acted on it on their behalf but failed to do so, way back in year 2011?

What are we going to tell patients and suffering families with mental illness who depend on us and trust us to be aware, informed, honest, upfront and transparent about these latest scientific long-term research findings, if they later prove to be fundamentally true?

I am optimistic however that here in Wisconsin, we will not be too busy, too proud or complacent or too invested in the status quo to consider alternatives, if in deed, we find these long-term evidence-based findings should point in that direction.

Thank you again so much for allowing me to talk with you today. I hope we still have a few minutes for your questions or comments.

Respectfully, William R. Benedict

(For more about this presenter’s evaluation work, see “Goal Attainment Scaling: Applications, Theory, and Measurement”, Mental Health and Social Service Applications, p. 81-104 which was edited by Thomas M. Kiresuk, Aaron Smith and Joseph E. Cardillo.)

To access all the documents to date regarding this mental health reform project,
see this writer’s blog: danecountyalmanac.blogspot.com

Handout at WC’s Leg & Policy Committee presentation

2011-01-28T17:02:00.000-06:00

(January 13, 2011)

Some thoughts prior to my meeting with the Legislative and Policy Committee regarding their likely response to Robert Whitaker’s book and to my action recommendation to the Council.

1. To what extent are Council members already aware of evidenced-based
long-term scientific studies and the significance of their findings?

2. Are Council members aware that such long-term outcome studies exist
for all the major mental health maladies, including schizophrenia,
depression, bipolar, anxiety, ADHD?

3. How many Council members have read either both or perhaps one of
Whitaker’s books on these long-term studies – Anatomy of an Epidemic,
Mad in America? If, so how many were already aware of these findings?

4. What do Council members know about Robert Whitaker? His education,
training, work before becoming a journalist, etc, and his reputation
as a science investigator reporter or writer? Awards?

5. If a member has read the book what level of credibility, scholarship and
respect do they have for Whitaker’s investigative and research style?
Did they find the book easy to read and interesting and appropriate for
most lay people and informed citizens?

6. Who do Council members believe would be the most objective and fair
group to evaluate these long-term mental health findings if not the
Council members themselves?

7. What understanding do members already have about how psychiatric
drugs affect long-term patient community adjustment and health?

8. Are Council members aware that mental illness has tripled over the
past two decades 1990 – 2010?

9. How many Council members are aware that due to mental illness every
day 1,100 adults and children are added to the government
disability rolls?

10. Where on “the most important scale” for Council members should
information of this kind be treated?

Robert Whitaker’s Anatomy of an Epidemic, and Mad in America

2011-01-28T17:00:00.000-06:00

Chapter 16
Pages 331 - 359
Blueprints for Reform

Examples of some of the possible policy/practice implications found in Whitaker’s two books: (This list is not in any special order with respect to importance or presumed
significance.)

New practice policies/practice formulations relating to psychiatric medications.

Solutions – When and how should they be used for health and safety.

Acknowledge the possibility that the biological causes of mental disorders continue to remain unknown. Present certainty leaves no room for error and causes providers to have too little humility with patients.

Why not consider the real possibility that psychiatric drugs, rather than fixing chemical imbalances in the brain, perturb the normal functioning of neurotransmitter pathways?

Acknowledge the possibility that current medications actually worsening long-term outcomes for a significant number of patients.

Prescribers still need to learn better ways to use the drugs more judiciously and wisely, and respect the need for some patients to be given alternative therapies, that don’t rely on medications or at least minimize their use.

To produce best results USE PSYCHIATRIC MEDICATIONS IN A SELECTIVE, limited and CAUTIOUS MANNER (OR NOT AT ALL) Dr. David Healy writes on the history of psychiatry.

Acknowledge the possibility that some patients can recover naturally.

Many patients will improve with low doses.

Focus on the patients past successes, 337

Patients are more interactive without medications 338

Long term use of drugs increase the likelihood of chronicity and a shorter life span.

Lower initial dosages

Consider practice policies that relate to the gradual medication withdrawal during the early medication phase of treatment. Establish best practice temporal standards to

Ensure that the long range medication regimens have regular patient-centered stop/go assessments specifically relating to the pro and cons of drug continuation.

Develop and require greater patient education about the pros and cons of medication versus other therapeutic alternatives

Consider doing a longitudinal budget analysis of the comparative proportionality of the cost of medication and other forms of therapy.

Longitudinally tract to percent of those on medications vs. social and more natural therapies.

Consider the implications of Whitaker’s study findings in the context greater consumer rights relative to their informed consent, safety and welfare.

Consider implications for existing long-term treatment and care for those who are placed an on-going drug regimen/

Evaluate and perhaps stop the ever expansion of psychiatric boundaries. Mental Health Advocacy Project

Brief Excerpts from Anatomy of an Epidemic

2011-01-28T16:53:00.001-06:00

Sixteen outcome studies

November 12, 2010

Perhaps you have not yet had the opportunity to read Robert Whitaker’s latest book, Anatomy of an Epidemic which deals with the history of mental illness in the United States through the prism of long-term scientific follow-up study results.

Whitaker asks us to imagine what our beliefs would be today if, over the past twenty years, we had opened our newspapers and read about the following findings, which represent but a sampling of the long-term outcome studies recently retrieved from
medical archives by Robert Whitaker:

A brief summary of the following 16 long-term mental health outcome studies
appear below and were taken from pages 307-309 of Whitaker’s book. Each summary is then followed with that study’s page and specific citation number.

1990 - In a large, national depression study, the eighteen-month the eighteen month stay-well rate was highest for those treated with psychotherapy (30 percent) and lowest for those treated with an antidepressant (19 percent) . NIMH Go to page 374; citation number 35.

1992 - Schizophrenia outcomes are much better in poor countries like India and Nigeria, where only 16 percent of patients are regularly maintained on anti-psychotics, than in the United States and other rich countries where continual drug use is the standard of care.
World Health Organization Go to page 370, citation number 45.

1995 - In a six-year study of 537 depressed patients those who were treated for the disorder were nearly seven times more likely to become incapacitated than those who weren’t, and three times more likely to suffer a “cessation” of their “principal social role.” NIMH Depression study. Go to 375, citation 61.

1998 - Antipsychotic drugs cause morphological changes in the brain that are associated with worsening of schizophrenia symptoms.
University of Pennsylvania Go to page 370, citation number 52.

1998 - In a World Health Organization study of the merits of screening for depression, those diagnosed and treated with psychiatric medications fared worse---in terms of their depressive symptoms and their general health---over a one-year period than those who weren’t exposed to the drugs.
WHO depression screening study. Got to page 375, citation number 59.

1999 - When long-term benzodiazepine users withdraw from the drugs, they become “more alert, more relaxed, and less anxious.”
University of Pennsylvania Benzo study. Go to page 372, citation number 37

2000 - Epidemiological studies show that long-term outcomes for bipolar patients today are dramatically worse than they were in the pre-drug era, with this deterioration in modern outcomes likely due to the harmful effects of antidepressants and antipsychotics.
Eli Lilly; Harvard Medical School Long-term bipolar outcomes. Page 379, citation number 53

2001 - In a study of 1,281 Canadians who went on short-term disability for depression, 19 percent of those who took an antidepressant ended up on long-term disability, versus 9 percent of those who didn’t take the medication.
Canadian Investigation bipolar depression study, See page 373, citation on page 167

2001 - In the pre-drug era, bipolar patients did not suffer cognitive decline over the long term, but today they end up almost as cognitively impaired as schizophrenia patients.
Sheppard Pratt Health System in Baltimore bipolar cognitive study, Page 379, citation 60.

2004 - Long-term benzodiazepine users suffer cognitive deficits “moderate to large” in magnitude Australian scientists’ benzo study. Seepage 372, citation 43.

2005 - Angel dust, amphetamines, and other drugs that induce psychosis all increase D2 HIGH receptors in the brain; antipsychotics cause this same change in the brain.
Angel dust reference. See page 370, citation 53
University of Toronto

2005 - In a five-year study of 9,508 depressed patients, those who took an antidepressant were, on average, symptomatic nineteen weeks a year, versus eleven weeks for those who didn’t take any medications.
Depression patients, See page 375, page 58
University of Calgary

2007 - In a fifteen-year study, 40 percent of schizophrenia patients off antipsychotics recovered, versus 5 percent of the medicated patients.
See page 371, citation 58
University of Illinois

2007 - Long-tem users of benzodiazepines end up “markedly ill-to extremely ill” and regularly suffer from symptoms of depression and anxiety.
Study of benzo users. See page 372, citation 40
French Scientists

2007 - In a large study of children diagnosed with ADHD, by the end of the third year “medication use was a significant marker not of beneficial outcome, but of deterioration.” The medicated children were also more likely to engage in delinquent behavior; they ended up slightly shorter, too.
Study of ADHD. See page 381, citation 36 & 39.
NIMH

2008 - In a national study of bipolar patients, the major predictor of a poor outcome was exposure to an antidepressant. Those who took an antidepressant were nearly four times as likely to become rapid cyclers, which is associated with poor long-term outcome.
Bipolar study. See page 378, citation 46 &47
NIMH

Letter on stem cells didn’t tell whole story

2011-01-02T01:22:00.001-06:00

Wisconsin State Journal, Letter to the editor

To support his argument that non-embryonic stem cell research is the stem cell of choice when measured by the percent of allocated funding grants, a recent writer referred to the California Institute of Regenerative Medicine, and noted that it recently approved funding for 19 grants worth $67 million with only five going to human embryonic stem cell research.

We were not told, however what proportion of the total funding went to non-embryonic or embryonic funding. Nor did the reader indicate that CIRM was conceived in 2005 by an overwhelming majority of California taxpayers in their opposition to President George Bush’s restriction on embryonic stem cell research.

Also CIRM has already allocated one of its $3 billion loan initiatives for embryonic stem cell research, much of which has already come back to California in private matching funds.

A study authored by Aaron Levine of Georgia Institute of Technology provides detailed information about stem cell research grants handed out by six states including California between December 2005 and December 2009. His findings detail that most human embryonic stem cell research conducted in the United States is funded by states, not the federal government. The share of stem cell funding given for embryonic stem cell research varied widely, from 97 percent in Connecticut to only 21 percent in New York, for example.

For more info go to stemcellaction.org.
-William R. Benedict, Madison

Institutes’ hoopla ignores chronically ill

2010-12-19T01:18:00.001-06:00

Capital Times - Sunday, December 19, 2010

As a patient advocate for stem cell research I was privileged to attend the Grand Opening of Wisconsin’s Institutes of Discovery (WID). WID is a spacious and remarkably attractive building. A richly deserved sense of accomplishment was in evidence at the event.

We were introduced to the key actors in the building’s initial concept and innovative design. Much time was spent discussing, who actually first had the dream of WID. Was it Governor Doyle or John and Tashia Morgridge? No, well then how about the Wisconsin Alumni Research Foundation’s Carl Gulbrandson or the interim director of the public side of WID, John Wiley? Each speaker who went to the podium modestly and graciously attributed WID’s initial idea to one or more others. Lastly, each of the UW scientists who were selected to locate their lab at WID was introduced and their lab’s specialty celebrated with loud applause from the crowd.

The grand opening of WID was most certainly a UW-Wisconsin signature event and properly celebrated in every way, with one exception: There was no mention of those so loudly touted as one of the chief reasons for WID’s creation back in 2004---those who suffer daily from catastrophic and chronic diseases.

It was in 2004 that Gov. Doyle first hailed what was to become WID “as the creation of a world class stem cell research center.” This appellation of WID given by Doyle now six years ago is in stark contrast with this year’s speeches and media accounts surrounding WID’s dedication.

This glaring omission of those suffering from chronic diseases could certainly not go unnoticed by anyone reading the extensive news articles heralding WID’s celebration or those in attendance at the Grand Opening. If there was ever an example of radically re-writing Wisconsin history, this will have to stand alone.

In news articles beginning in late November of this year and during the Grand Opening ceremonies on December 2nd many reasons for WID’s construction were cited. One speaker referred to WID as an engine for creativity.

Other speakers and writers referred to WID as the heart of collaboration and the interdisciplinary community; a boost to Wisconsin’s economy and job creation; a center for community out-reach and education for the young and seniors; a space to inspire generations to come; and a space for every constituency to gather; the center of medical science and technology, and a trading center of ideas.

Apparently stem cell research committed to curing chronic disease is no longer the Wisconsin Institutes of Discovery’s paramount reason for being. UW indeed will be challenged to win back the trust of those suffering from chronic diseases in Wisconsin.

William R. Benedict is a patient advocate for stem cell research.

UW/media re-writes WID's history - Comment

2010-12-13T01:08:00.001-06:00

From: William Benedict
Sent: Monday, December 13, 2010
Subject: UW/media re-writes WID's history

Please read my attached article. I believe the decision by UW to purposely ignore WID's mission to chiefly help bring about a cure for those who suffer daily from debilitating chronic diseases was no accident. Such a total blackout in the media and during the addresses at WID on Dec 2 suggest to me that such decision has recently been written into UW's strategic plan. I can't imagine how else this commitment could be so totally ignored by those most involved unless it is by some design or intent. If I am correct and I think I am, patients and their families and all advocate group's should be disappointed as I am at such insensitivity, and contact the UW about your concerns NOW. I was disappointed that there was no person selected to speak specifically about those with debilitating diseases at the Opening, and to express the hope that we all have for stem cell research, and for WID particularly, to help bring this about. Respectfully, Bill Benedict

From: "UW Official"
To: William Benedict
Sent: Mon, December 13, 2010
Subject: RE: UW/media re-writes WID's history

Hi Bill: I am sorry if you missed that the entire top floor of the facility is devoted to regenerative medicine and tissue engineering. Jamie Thomson was the first principal scientist hired by the Morgridge Institute for Research and his entire laboratory will be located in the top floor of the new facility. Tom Turgn of the department of chemical engineering who studies tissue engineering will share the top floor with Dr. Thomson and work collaboratively with him. In addition, one of the stated goals of the Morgridge Institute for Research is “Discovery to Delivery”. The Morgridge Institute for Research will collaborate with the medical school, the hospital and the private sector to realize the practical application of the technologies discovered to benefit patients. There are of course other very important goals of the facility and programs taking residence in the facility and I believe all of that was part of the governor’s vision in 2004. WARF, which is one of the owners of the facility has had a long and strong relationship with the University in helping deliver the technology to the private sector to benefit the public. It is something we constantly focus on. Thanks for your advocacy, Bill. Best regards.

UW Official
Wisconsin Alumni Research Foundation

From: William Benedict
To: "UW Official"
Sent: Mon, December 13, 2010
Subject: Re: UW/media re-writes WID's history

Thanks for your kind response. My article attempted to state only that
in the news articles preceding the Grand Opening and later during the Opening itself, the speakers made little or no references whatsoever about the important role WID could play in using stem cell research for curing chronic diseases. Even though during the early planning for WID these same individuals seemed to promise those who suffer daily from chronic illnesses that WID would play a critical role in helping to realize the patients and their families hopes for some cures in the future.

Because of this fact I believe that others like myself will be disappointed to learn that this was the case. Hopefully both UW, the media and advocates like myself will communicate more openly and clearly in the future. As a citizen let me take this opportunity to thank you for what was otherwise an inspiring occasion. Respectfully yours, William R. Benedict

Comments from Readers

2010-11-19T00:28:00.001-06:00

Subject: Re: Anatomy of an Epidemic

Dear Mr. Benedict

Looks like I missed an interesting discussion.

The difficulty here, and I am not going to get into this, is that I could get one- if not more- reference to contradict these.

Our clinical practices are based on preponderances of evidence and not one trial that shows this or that. The process isn't perfect, but our current treatments help many people.

Again, we can do better, and we need to continue to work on new and more effective treatments with fewer side effects.

Dr. Smith
___________________________________

Dr. Smith - Thanks so much for responding to my message to the Wisconsin Council on Mental Health. I should say first that unfortunately there was no time available for any discussion of Whitaker's book other than my brief recommendation that these new long-term outcomes studies are now more conveniently available to the public and to all mental health care stakeholders.

As you no doubt know these long-term outcome studies are in stark contrast to the FDA phase three clinical trials for new medications. The former tend to be more short-term and narrowly conceived and only report on the volunteer patient's short term clinical response to the particular medication under review.

Long-term studies are usually designed much more broadly -- from the onset of treatment to 2, 4, 6, 10+ year follow-ups -- to examine the patients' actual community functioning while or after they stop taking the medication. These are usually based on global functioning rating scales and a set of quality of life indicators including degree of financial independence, over all health, family functioning, education/training, affiliations, etc...

While the federal government has recently made available to NIH and FDA for such long-term outcome mental health research funding, both groups have been slow in making use of such funding.

If you are aware of any such long-term studies beyond what Whitaker has given us, we would very much appreciate seeing even one of them.

I should also add that such studies are much more systemic and go beyond the clinical safety and efficacy of a single drug or regimen. The focus of my particular advocacy is toward encouraging concerned citizens to simply become more aware that such studies now are available to the public.

Again, it was so nice of you to respond to me. I would very much like to continue our discussion.

Most respectfully,
Bill Benedict

(Reader names are fictitious to protect the confidentiality of the reader)

Brief Excerpts from Anatomy of an Epidemic

2010-11-12T02:16:00.003-06:00

Sixteen outcome studies

Perhaps you have not yet had the opportunity to read Robert Whitaker’s latest book, Anatomy of an Epidemic which deals with the history of mental illness in the United States through the prism of long-term scientific follow-up study results.

Whitaker asks us to imagine what our beliefs would be today if, over the past twenty years, we had opened our newspapers and read about the following findings, which represent but a sampling of the long-term outcome studies recently retrieved from medical archives by Robert Whitaker.

A brief summary of the following 16 long-term mental health outcome studies appear below and were taken from pages 307-309 of Whitaker’s book. Each summary is then followed with that study’s page and specific citation number.

1990 - In a large, national depression study, the eighteen-month the eighteen month stay-well rate was highest for those treated with psychotherapy (30 percent) and lowest for those treated with an antidepressant (19 percent).
NIMH Go to page 374; citation number 35.

1992 - Schizophrenia outcomes are much better in poor countries like India and Nigeria, where only 16 percent of patients are regularly maintained on anti-psychotics, than in the United States and other rich countries where continual drug use is the standard of care.
World Health Organization Go to page 370, citation number 45.

1995 - In a six-year study of 537 depressed patients those who were treated for the disorder were nearly seven times more likely to become incapacitated than those who weren’t, and three times more likely to suffer a “cessation” of their “principal social role.”
NIMH Depression study. Go to 375, citation 61.

1998 - Antipsychotic drugs cause morphological changes in the brain that are associated with worsening of schizophrenia symptoms.
University of Pennsylvania Go to page 370, citation number 52.

1998 - In a World Health Organization study of the merits of screening for depression, those diagnosed and treated with psychiatric medications fared worse---in terms of their depressive symptoms and their general health---over a one-year period than those who weren’t exposed to the drugs.
WHO depression screening study. Got to page 375, citation number 59.

1999 - When long-term benzodiazepine users withdraw from the drugs, they become “more alert, more relaxed, and less anxious.”
University of Pennsylvania Benzo study. Go to page 372, citation number 37

2000 - Epidemiological studies show that long-term outcomes for bipolar patients today are dramatically worse than they were in the pre-drug era, with this deterioration in modern outcomes likely due to the harmful effects of antidepressants and antipsychotics.
Eli Lilly; Harvard Medical School Long-term bipolar outcomes. Page 379, citation number 53

2001 - In a study of 1,281 Canadians who went on short-term disability for depression, 19 percent of those who took an antidepressant ended up on long-term disability, versus 9 percent of those who didn’t take the medication.
Canadian Investigation bipolar depression study, See page 373, citation on page 167

2001 - In the pre-drug era, bipolar patients did not suffer cognitive decline over the long term, but today they end up almost as cognitively impaired as schizophrenia patients.
Sheppard Pratt Health System in Baltimore bipolar cognitive study, Page 379, citation 60.

2004 - Long-term benzodiazepine users suffer cognitive deficits “moderate to large” in magnitude.
Australian scientists’ benzo study. See page 372, citation 43.

2005 - Angel dust, amphetamines, and other drugs that induce psychosis all increase D2 HIGH receptors in the brain; antipsychotics cause this same change in the brain.
Angel dust reference. See page 370, citation 53
University of Toronto

2005 - In a five-year study of 9,508 depressed patients, those who took an antidepressant were, on average, symptomatic nineteen weeks a year, versus eleven weeks for those who didn’t take any medications.
Depression patients, See page 375, page 58
University of Calgary

2007 - In a fifteen-year study, 40 percent of schizophrenia patients off antipsychotics recovered, versus 5 percent of the medicated patients.
See page 371, citation 58
University of Illinois

2007 - Long-tem users of benzodiazepines end up “markedly ill-to extremely ill” and regularly suffer from symptoms of depression and anxiety.
Study of benzo users. See page 372, citation 40
French Scientists

2007 - In a large study of children diagnosed with ADHD, by the end of the third year “medication use was a significant marker not of beneficial outcome, but of deterioration.” The medicated children were also more likely to engage in delinquent behavior; they ended up slightly shorter, too.
Study of ADHD. See page 381, citation 36 & 39.
NIMH

2008 - In a national study of bipolar patients, the major predictor of a poor outcome was exposure to an antidepressant. Those who took an antidepressant were nearly four times as likely to become rapid cyclers, which is associated with poor long-term outcome.
Bipolar study. See page 378, citation 46 &47
NIMH

Council Presentation Rationale

2010-11-03T11:37:00.001-05:00

Originally presented at the Adult Quality Committee of the Wisconsin Council on Mental Health, Madison, WI

Wednesday, October 20, 2010

Rationale as to why mental health stakeholders should become more knowledgeable regarding the long-term mental health findings in Robert Whitaker’s 2010 book, Anatomy of an Epidemic.

Today, most mental health professionals rely on medications to meet treatment objectives. Probably this results from two factors.

First, the medical model has a long history of medication usage to meet treatment goals. Second, budgetary considerations reduce reliance on worker-intensive patient services. Workers include social workers, psychiatrist, psychologist and other related mental health practitioners.

As we have noted in the field of health services in general, much attention is placed on the fiscal costs of treatment services rather than the long-term salutary effects on patients.

Medication certainly has its place; however, studies of treatment effectiveness indicate that questions may be raised as to effects of extensive medications on patients being treated for mental illness.

The author of this book strongly questions what is happening today and suggests re-evaluation of the current treatment paradigm and probable changes in mental health funding and practice policy.

Excerpt From Anatomy of an Epidemic

2010-11-01T02:56:00.001-05:00

(Below is an example of just one of the long-term mental health outcome studies reviewed by author Mark Whitaker in his new book, Anatomy of an Epidemic. It is just one of 16 major outcome studies conducted and reported in the scientific literature from 1990 to 2008. These and dozens more appear in his book going back to 1950. This abstracted piece below was prepared by William R. Benedict and he is responsible for any errors or mistakes in this summary.)

Fifteen Year Long-term Schizophrenia Outcome Study
by Martin Harrow at the University of Illinois College of Medicine
From 1975-1983 Harrow enrolled 64 young schizophrenics in a long-term study
Funded by the National Institute of Mental Health.

In 2007 Dr. Harrow published a report on the patients’ fifteen-year outcomes in the Journal of Nervous and Mental Disease, and he has further updated this review in his presentation at the APA’s 2008 meeting.

In order to have an economically diverse sample he recruited his patients from two Chicago hospitals. One was private and the other public. Ever since then he has regularly assessed how well they are doing.

Are they symptomatic?
Are they in recovery?
Employed?
Do they take antipsychotic medications?

His results provide an up-to-date look at how schizophrenic patients in the United States are faring.

Hypothesis – If the conventional wisdom is to be believed, then those who stayed on antipsychotics should have had better outcomes. Conversely, if the scientific literature reviewed in Whitaker’s work is to be believed, then it should be the reverse.

Here are Dr. Harrow’s findings which were published on his fifteen-year outcomes in the Journal of Nervous and Mental Disease, and further updated in 2008 at the APA’s annual meeting.

Findings at the end of two years:

The non-antipsychotic group were doing slightly better on a global assessment scale than the group on the drugs.

Findings at the end of two and half more years or at 4.5 years - the group not on antipsychotics were now doing dramatically diverging from the group still on drugs. Now the off-med group began to improve significantly, and now 39 percent of this group were in “recovery” and more than 69 percent were working.

In contrast, outcomes for the medication group worsened during this same period. As a group their global functioning declined slightly, and at the 4.5-year mark, only 6 percent were in recovery and few were working.

Stark divergence in outcomes remained for the next ten years.

Findings at the fifteen-year follow-up - 40 percent of those off drugs were in recovery, more than half were working, and only 28 percent suffered from psychotic symptoms.

In contrast, only 5 percent of those taking antipsychotic were in recovery, and 64 percent were actively psychotic.

Dr. Harrow’s conclusions were:

“I conclude that patients with schizophrenia not on antipsychotic medication for a long period of time have significantly better global functioning than thus on antipsychotics,” Harrow told the APA audience in 2008.

Analysis of the findings – Indeed, it wasn’t just that there were more recoveries in the un-medicated group. There were also fewer terrible outcomes in this group. There was a shift in the entire spectrum of outcomes. Ten of the twenty-five patients who stopped taking antipsychotics recovered, eleven had so-so outcomes, and only four (16 percent) had a “uniformly poor” outcome. In contrast, only two of the thirty-nine patients who stayed on antipsychotics recovered, eighteen had so-so outcomes, and nineteen (49%) fell into the “uniformly poor” camp.

Medicated patients had one-eighth the recovery rate of un-medicated patients, and a threefold higher rate of faring miserably over the long term.

This outcome's picture is revealed in an NIMH-funded study, the most up-to-date one we have today. It also provides us with insight into how long it takes for the better outcomes for non-medicated patients, as a group, to become apparent. Although this difference began to show up at the end of two years, it wasn’t until the 4.5 year mark that it became evident that the non-medicated group., as whole, was doing much better.

Furthermore, through Harrow’s rigorous tracking of patients, he discovered why psychiatrists remain blind to this fact. Those who got off their anti-psychotic medications left the system, he said. They stopped going to day program they stopped seeing, therapists, they stopped telling people they had ever been diagnosed with schizophrenia, and they disappeared into society.

Long Term Outcome Studies On Long Term Mental Health Care

2010-11-01T02:45:00.002-05:00

Introduction -

Today, most mental health professionals rely on medications to meet treatment objectives. Probably this results from two factors.

First, the medical model has a long history of medication usage to meet treatment goals. Second, budgetary considerations reduce reliance on worker-intensive patient services. Workers include social workers, psychiatrist, psychologist and other related mental health practitioners.

As we have noted in the field of health services in general, much attention is placed on the fiscal costs of treatment services rather than salutary effects on patients.

Medication certainly has is place; however, studies of treatment effectiveness indicate that questions may be raised as to effects of extensive medications on patients being treated for mental illness.

Robert Whitaker in his book Anatomy of an Epidemic strongly questions what is happening today and suggests re-evaluation of the current treatment paradigm and probable changes in practice policy.

It’s just off the press this year. Some of you may have read his first book called Mad in American which also dealt with psychiatric policy issues.

Why has the number of disabled mentally ill in the US tripled over the last two decades in spite of all the new miracle medications now in the market place?

In 1955 there were 355,000 adults in state and county mental hospitals with a psychiatric diagnosis. During the next three decades (the era of the first generation of psychiatric drugs) this number rose to 1.25 million. As all of you know, Prozac arrived on the market in 1988, (along with the dawn of the second new generation of drugs) and during the next 20 years, the number of disabled mentally ill grew to more than four million adults (4 million) in 2007)

Every day over 850 adults and 250 children are added to the government’s disability list - Supplemental Security Income or Social Security Disability Insurance. That is, over eleven hundred American citizens become newly disable each day.

During this latter period the prescribing of psychiatric medications to children and adolescents took off (1987 to 2007), and as this new medical practice took hold, the number of youth in America receiving a government disability check due to mental illness leapt from 16,200 in 1987 to 561,569 in 2007 (a 35–fold increase.)

Whitaker asks, What is going on? He challenges his readers to think through the question themselves. In the first part of Whitaker’s investigation he discusses what is known today about the biological causes of mental illness. He asks, “Do psychiatric medications fix “chemical imbalances” in the brain or do they in fact create them?”

He provides Magnetic Resonance Imaging (MRI) evidence that the brain after extensive drug treatment physiologically adapts and soon morphs or changes as a response to the guest chemicals.

He provides official court testimony which shows that in an effort to market Prozac the marketers intentionally tried to say that certain negative drug reactions were simply symptoms of the disease.

As you all know researchers have spent decades studying this question and by the late 1980s they had the answer. If you read this book, and if you are anything like me you will be as startled and dismayed as I was about what Whitaker actually found in the scientific journals as opposed to what you and I, and all American citizens, have received from our public media.

I believe you will be both astonished and outraged at how the drug industry, including the American Psychiatric Association, have made a science of false marketing.

While Whitaker’s description of the development and marketing of drugs in the 21st century will be fascinating and in some ways remarkably ingenious, don’t let it distract you from his core message.

Mainly, what the scientific researchers have learned over the last 60 years about how psychiatric drugs have affected long-term mental health outcomes, and especially what these outcome findings have to say about people with serious and persistent mental illness.

In his meticulous investigation into the long-term antipsychotic treatment research literature Whitaker asks, “Did they discover that the drugs helped people stay well?” Function in the community better? Enjoy good physical health? Or, did these medications actually increase the likelihood that people will become chemically ill, less able to function and more prone to physical illness?

To each of the above questions, drug-based treatment, in these long-term studies, was proven by robust evidence to be either less effective or actually potentially contribute to increased recovery time, and more prone to physical illness.

Whitaker also asks, are antipsychotics effective when schizophrenia patients are in crisis? His answer, psychiatric medication has been proven to be effective when patients are in crisis and for reducing target symptoms for short-term treatment. Are long-term recovery rates significantly higher for non-medicated schizophrenia patients? Time and time again the research from these long-term studies answered this question in the affirmative.

Does taking antidepressants decrease or increase the risk that a depressed person will become disabled by the disorder? The preponderance of the evidence shows that antidepressants increase the risk that they will become disabled.

Conclusion:

Now, before closing, I would like say a few words about my recommendation to the Council to conduct an examination into these long-term outcome studies and prepare a report regarding the implications that these findings have for reforming the Wisconsin mental health system.

I am convinced that Robert Whitaker’s book will be this century’s definitive
source when people gather to discuss long-term outcome evaluation studies. I believe that hereafter mental health researchers will use and refer to this text whenever they turn their attention to the latest scientific findings having to do with long-term mental health outcome studies.

Hereafter when ever questions of long-term treatment efficacy are raised in mental health care, researchers and administrators, and all stakeholders, the world over, will turn to Whitaker’s book.

Because I feel so strongly about this, I have requested that Wisconsin’s Council on Mental Health become informed of this scientific information and reconcile it with their future long-range planning for this state’s mental health system.

One implication is clear and that is that existing assumptions about what best constitutes the most effective treatment paradigm needs to be reexamined.

To continue as usual in the face of this overwhelming evidence would be ethically and professionally irresponsible. Whitaker’s findings demand that all mental health stakeholders, but especially this citizen council, our Governor’s oversight body, carefully consider these findings and document their own findings in response to their own study of this work.

Thanks you again so much for allowing me to talk with you today. I hope we still have a few minutes for questions or comments.

Warning/Disclaimer – This presentation and the content and scope therein is not intended to be applicable to any individual and his/her doctor or prescriber. I strongly recommend that any questions that might arise from this presentation relating to your particular medical situation, be discussed between you and your doctor.

(For more about this presenter’s evaluation work, see “Goal Attainment Scaling: Applications, Theory, and Measurement”, Mental Health and Social Service Applications, p. 81 which was edited by Thomas M. Kiresuk, Aaron Smith and Joseph E. Cardillo.)

For more information on this subject see my blogs by clicking on mental health reform in the left column.

William R. Benedict: Embryonic stem cell research is necessary

2010-10-18T15:37:00.002-05:00

Letter to the Editor, Capital Times

As a patient advocate for state funding of stem cell research in Wisconsin I was somewhat dismayed to read the letter to the editor written by the wife of the Republican gubernatorial nominee, Scott Walker. I say this for two reasons. First, while we all might like it if adult stem cells were sufficient in and of them selves; this simply is not the case, as stated by the scientific community.

In 2008 and 2010 I attended the World Stem Cell Summit sponsored by the Genetics Policy Institute. This international yearly gathering is attended by top scientists from all over the world. I can assure you that at both of these meetings their voice as a group was crystal clear. To bring about a speedy cure of our most life threatening diseases, all types of stem cells need to be studied. Not just adult stem cells.

Secondly I was dismayed and disappointed that possibly our next first lady of Wisconsin would deliberately insert into her letter what is for almost all voters a non-issue. Human cloning has already been outlawed by all the national ethics and best practice guidelines throughout the world and is also specifically prohibited by law in almost every state in these United States.

I want a first lady that will tell it as it really is. The facts are that already discarded human embryos are taken from in-vitro fertilization clinics and donated by women to be used for ESC research. And, why shouldn’t these already discarded cells be used to save life and help heal the chronically ill and suffering?

Benedict is a stem cell patient advocate and blogs at: danecountyalmanac.blogspot.com

Click for original letter.

2010 World Stem Cell Summit & New Bio Research Model

2010-10-11T11:18:00.000-05:00

As patient advocate for stem cell research and a local columnist I have just returned from the 2010 World Stem Cell Summit and was delighted to see UW's Dr. Tim Kamp and Jordana Lenon at this exciting world-wide conference. First I want to give a special thanks to Mr. Bernard Siegel, J.D., founder and director of the Genetics Policy Institute (GPI), and Mr. Alan Fernandez, Director of Development. Without their support my report below would not have been possible.

Dr. Kamp was one of the Summit's speakers and Ms. Lenon both made UW's stem cell science presence known via both staffing UW's Stem Cell Regenerative Medicine Center's booth, and also contributed a very comprehensive article to the 2010 World Stem Cell Report which described Wisconsin's stem cell science and technology and the unprecedented opportunities it now offers the world.

Presented in the U.S. Policy, Ethics and Science section of this Report, the article itself is both a fascinating and eye-opening story on the Wisconsin stem cell story to date from the first extracted embryonic stem cell accomplished right here in our own State of Wisconsin. This article is a "must read" for any Wisconsin stem cell advocate or supporting taxpayer in this state.

Since this event I was privileged to report in the Capital Times on both this World Stem Cell Summit in Detroit and on a new and exciting stem cell science research model which I hope and pray will hasten the translation of these miracle stem cell discovers to the chronic patient's bedside.

To read my Capital Times story, you can click on this link.

William R. Benedict: New model will speed treatment of chronic diseases

2010-10-10T04:45:00.001-05:00

Click here to read my guest column in the Capital Times.

New research model will speed up treatment of chronic diseases

2010-09-29T13:30:00.003-05:00

On Thursday, December 2, 2010 the University of Wisconsin will celebrate the opening of the Wisconsin Institutes of Discovery (WID). I wish David Iverson, a former news reporter for Wisconsin’s public television, would be invited to speak on this auspicious occasion.

While many will see this event as a huge investment in innovation technology and higher paying jobs for Wisconsin’s shrinking economy, for many of us who suffer daily from disabling chronic diseases see the event as the beginning of a bright new day of hope. Hope that this new science facility’s foremost mission is to shorten the period before they are once again whole and free of pain once more.

What a unique and perfect choice. Mr. Iverson cut his teeth in Madison as a cub reporter and is now perhaps one of the most articulate and renown public news reporter in the nation. Iverson was diagnosed with Parkinson’s disease in 2004 and has been reporting on the search for more effective treatments for that disease and others ever since. What would be more symbolic and appropriate than to have such an informed spokesman for all the people who suffer daily from these burdensome and often oppressive diseases? (Together this includes virtually all of us.)

For those readers who saw Iverson’s news story on PBS’s News Hour last Thursday evening they will recall he reported on a new research model for traditional academic research which is best characterized by patient centered-ness, interdisciplinary collaboration and greater transparency. Most briefly, Iverson’s story reported on the huge gap between when the basic research is published and when big pharma and the biotechnology industry becomes involved and actually invests to bring it to the market.

This gap is often referred to as the valley of death and refers to the huge sum required for the repeated series of never ending human trials. Big pharma is finding fewer and fewer pieces of research worthy and complete enough to invest in. They increasingly refuse to invest in the translation phase of the innovation development process largely owing to a lack of clinical data still tucked safely away in the lead researcher’s lab.

Many believe that the slow pace of medical advancement is directly related to the researchers’ perceived outcomes from their research. Iverson tells the story of how the National Institute of Health spends $30 billion dollars each year to produce 800,000 published papers but its grantees are unable to produce a patient-centered treatment option sufficiently developed enough to persuade big pharma and/or the biotechnology industry to invest further in their work.

If the basic research is to be credible in terms of this new research model the researcher begins by immediately changing their beginning question of “why do certain conditions exist, to a new focus of, how can I repair this patient’s specific condition? Rather than starting with an intriguing scientific question, the researcher begins by asking what can we do treat a patient with this kind of disease? Using this approach in a multiple sclerosis example, the question is not why does the myelin go missing which sheathes the nerves, but more practically, how can we repair it?

This patient-centered research question must begin immediately to be integrated into the entire research/medical enterprise involving academics, researchers and medical scientists, including the clinical staff, family physician, patients and their caretakers.

After viewing this News Hour presentation, I immediately went to my computer and reviewed the Wisconsin Institutes of Discovery’s key objectives for this public-private partnership. As I compared the new research model discussed above with WID’s key objectives, I was delighted to see that one key objective is to “Create the potential for a fundamental transformation of human biology and medicine.”

Another objective included, “Provide cutting edge scientific advances for clinical application and translation in the UW-Madison Medical School’s new Wisconsin Institutes for Medical Research.” This WID objective appears to me to be consistent with the need to move more quickly and directly with the clinical science necessary to transform the research question into patient treatment.

Note the new locus where this clinical science is to now take place -- mostly all right here in the UW-Madison region. Presently there exist a costly disconnect between the origin of the research and where and who does the grunt clinical work necessary to eventually help bring it into the clinic. Any thing less for a first class world-wide and preeminent multidisciplinary science center now seems almost unbelievable and short-sighted.

I was struck by the convergence already apparent between this new research model discussed above with UW WID’s key objectives. I believe that David Iverson would be able however to give these objectives a fresh and clearer meaning to both the taxpaying health consumer and the business community as well. When such a transformation process is completed biotech innovations will become far less costly and happen much more often, and again, Wisconsin will lead the way.

If this article serves to bring these two points of view closer together (a new and more expeditious research model and the journey that WID is about to begin) then it will have met its objective as well.

Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

Ask the candidates about state funding for stem cell research

2010-09-12T11:23:00.001-05:00

Capital Times – Guest Column

Did you know that the State of Wisconsin has a “hands off” policy from discussing state funding of embryonic stem cell research? It can be compared to our government’s military policy of “Don’t Ask Don’t Tell” (DADT) Essentially it says that all Wisconsin citizens who hold a “state funding” policy perspective or orientation in Wisconsin’s stem cell funding debate should maintain a DADT attitude or position.

While of course no such formal policy in fact exists in Wisconsin, it’s a DADT-like solution that our state officials and legislators from both parties have informally adopted, and unfortunately, as has our public media here in Wisconsin. If you have any doubt about this I would like to point your attention to five exhibits of evidence from taken from various media sources following last week’s very controversial federal court decision to block federal funding of embryonic stem cell research.(An appeals court on Sept. 9 temporarily stayed the decision; the legal battles are far from over.)

Exhibit A: 8/25/10 By WSJ science reporter David Wahlberg. While first providing some historical background going back to 1998 for the reader, Wahlberg makes no mention whatever that state funding remains non-existent in Wisconsin. One would think that such information would be very relevant for the reader to know in an article dealing with a research funding crisis affecting thousands of Wisconsin citizens who suffer daily from cell-based chronic illnesses, and for Wisconsin future high tech job market.

Exhibit B: 8/3110 In the WSJ Our Opinion entitled, “Don’t stem promising research,” It refers to “this recurring hurdle… to promising medical research.” It then goes on to weigh the likelihood that Congress will intervene to address this obstruction, but nevertheless has absolutely nothing to say about what other funding alternatives Wisconsin itself has at its disposal to help alleviate this episodic federal financial shortfall. --- such as some form of on-going state legislative funding.

Exhibit C: 9/1/10 WSJ Letter to the Editor, entitled “Why does source of funding matter?” The writer notes that “If the National Institutes of Health cannot invest in such research, it falls to the private sector.” How about our own state government?.

Three other letters to the editor this past week shared their views on this federal funding decision. None however mention any state financing alternatives.

Exhibit D: 9/1-7/10 By The CapTimes reporter, Todd Finkemeyers. His article entitled “Stem cells back in the spotlight, A setback for UW research could boost gov candidate Barrett.”

Unlike the science piece in Exhibit A, this was certainly a political piece and beautifully framed so as not violate Wisconsin’s DADT rule. Finkemeyer quotes Democratic candidate, Tom Barrett: “As governor, I will fight for essential stem cell research, and I will make sure scientists and researchers – not politicians – drive our research and technology agenda.” In this statement Barrett has adopted Gov. Doyle’s code words. Translated it means Barrett is telling the Wisconsin voters that he also will not support “state funding of stem cell research” but will support the use of federal dollars alone for Wisconsin’s stem cell research.

If indeed Barrett truly believes that embryonic stem cell research is essential and our best hope for a cure for thousands of Wisconsin citizens with serious chronic diseases, and that such research will be critical in Wisconsin’s economy far into the future, then why doesn’t he want to consider every means possible to ensure the continuity and financial support necessary to make Wisconsin’s stem cell research program truly one of the best in the world? Especially since the tepid federal support continues to threaten the health and safety of millions of citizens who suffer daily from catastrophic diseases?

I believe that this issue --- state stem cell funding ---is too important to continue a day longer to allow the present DADT rule to continue in Wisconsin’s political commons. This wily subterfuge must be seen for what it is. Cover for political leadership that doesn’t have enough trust and faith in the Wisconsin taxpayer to allow them the opportunity at the polls to decide this issue once and for all. Without such an opportunity for the people to be heard, Wisconsin’s stem cell research program will move further and further into mediocrity.

Ask your political candidates now running for office and your present political leaders why they continue not to lead on an issue so important to so many?

Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

“Don’t Ask Don’t Tell”: Untold story of Wisconsin’s stem cell funding

2010-09-09T12:54:00.001-05:00

Did you know that the State of Wisconsin has a “hands off” policy from discussing state funding of embryonic stem cell research? It can be compared to our government’s military policy of “Don’t Ask Don’t Tell” (DADT) Essentially it says that all Wisconsin citizens who hold a “state funding” policy perspective or orientation in Wisconsin’s stem cell funding debate should maintain a DADT attitude or position.

While of course no such formal policy in fact exists in Wisconsin, it’s a DADT-like solution that our state officials and legislators from both parties have informally adopted, and unfortunately, so has our public media here in Wisconsin. If you have any doubt about this I would like to point your attention to five exhibits of evidence from taken from various media sources following last week’s very controversial federal court decision to block federal funding of embryonic stem cell research.

Exhibit A: 8/25/10 By WSJ science reporter David Wahlberg. While first providing some historical background going back to 1998 for the reader, Wahlberg makes no mention whatever that state funding remains non-existent in Wisconsin. One would think that such information would be very relevant for the reader to know in an article dealing with a research funding crisis affecting thousands of Wisconsin citizens who suffer daily from cell-based chronic illnesses, and for Wisconsin future high tech job market.

Exhibit B: 8/3110 In the WSJ Our Opinion entitled, “Don’t stem promising research,” It refers to “this recurring hurdle… to promising medical research.” It then goes on to weigh the likelihood that Congress will intervene to address this obstruction, but nevertheless has absolutely nothing to say about what other funding alternatives Wisconsin itself has at its disposal to help alleviate this episodic federal financial shortfall. --- such as some form of on-going state legislative funding.

Exhibit C: 9/1/10 WSJ Letter to the Editor, entitled “Why does source of funding matter?” The writer notes that “If the National Institutes of Health cannot invest in such research, it falls to the private sector.” How about our own state government?.

Three other letters to the editor this past week shared their views on this federal funding decision. None however mention any state financing alternatives.

Exhibit D: 9/1-7/10 By The CapTimes reporter, Todd Finkemeyers. His article entitled “Stem cells back in the spotlight, A setback for UW research could boost gov candidate Barrett.”

Unlike the science piece in Exhibit A, this was certainly a political piece and beautifully framed so as not violate Wisconsin’s DADT rule. Finkemeyer quotes Democratic candidate, Tom Barrett: “As governor, I will fight for essential stem cell research, and I will make sure scientists and researchers – not politicians – drive our research and technology agenda.” In this statement Barrett has adopted Gov. Doyle’s code words. Translated it means Barrett is telling the Wisconsin voters that he also will not support “state funding of stem cell research” but will support the use of federal dollars alone for Wisconsin’s stem cell research.

If indeed Barrett truly believes that embryonic stem cell research is essential and our best hope for a cure for thousands of Wisconsin citizens with serious chronic diseases, and that such research will be critical in Wisconsin’s economy far into the future, then why doesn’t he want to consider every means possible to ensure the continuity and financial support necessary to make Wisconsin’s stem cell research program truly one of the best in the world? Especially since the tepid federal support continues to threaten the health and safety of millions of citizens who suffer daily from catastrophic diseases?

I believe that this issue --- state stem cell funding ---is too important to continue a day longer to allow the present DADT rule to continue in Wisconsin’s political commons. This wily subterfuge must be seen for what it is. Cover for political leadership that doesn’t have enough trust and faith in the Wisconsin taxpayer to allow them the opportunity at the polls to decide this issue once and for all. Without such an opportunity for the people to be heard, Wisconsin’s stem cell research program will move further and further into mediocrity.

Ask your political candidates now running for office and your present political leaders why they continue not to lead on an issue so important to so many?

Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

New book changes the conversation on mental illness

2010-09-07T22:45:00.000-05:00

Capital Times - Opinion

Have you ever wondered what is really involved in protecting you from taking an unsafe or ineffective medication? And, did you know that over 1100 adults and children with mental illness are placed on the government’s disability list each day ---250 of which are children!

There is a new book just out called Anatomy of an Epidemic by Robert Whitaker who brings some fresh light on this subject, and for the first time, looks beyond the drug approval and marketing process and looks squarely at the long-term follow-up effects of the drug industry’s impact on our mental health service system.

Whitaker examines the long-term outcome effectiveness studies of drug-based treatment and compares their effectiveness with non-medication psychosocial treatment, including family counseling, education and various forms of group treatment.

This literature review shows that psychiatric medications have proven their effectiveness for reducing certain serious psychotic symptoms such as anxiety, depression, hallucinations, paranoia and other thought disturbances especially for the serious mentally ill. While these drugs play a critical role in stabilizing patients in the community, Whitaker asks “why then is it that thousands more adults and children are added to the government’s disability rolls each year?”

In addition to the dramatic increase in our disabled population, the studies examined, used a variety of other long-term outcome measures such as length of treatment, and hospital discharge and relapse rates. Finally, drug-based treatment versus non-medication with psychosocial treatment methods, were also compared. Surprisingly, these non-drug therapies were found consistently to produce better long-term results and much less likely to cause chronicity or physical health related problems, than long-term drug-based treatment.

These results are very different than what the pharmaceutical industry and are public media would have us believe. Disability rates for mental illness in 1987 were 1.25 million people (1 in every 184 Americans) receiving disability payments, and by 2007 this figure more than doubled to 3.97 million (now 1 in every 76 Americans). In spite of Prozac and a host of other second generation “miracle” drugs, our serious mentally ill disabled population has soared.

As a former program evaluator for over 30 years and now a patient advocate I would like to recommend that our federal and/or state government mandate and conduct public funded long-term follow-up outcome mental health research studies every decade. This would assist state and local mental health planning groups to operate free from the drug marketers and better avoid the control and influence of special interests groups.

Meanwhile, until this happens, Robert Whitaker’s book, and the extensive long-term outcome study findings contained therein should be at the top of every mental health supporter’s priority reading list. This book will be this century’s definitive source whenever mental health researchers and other stakeholders gather to discuss, and compare, long-term outcome evaluation mental health findings.

Meanwhile planning councils like our own Wisconsin Council on Mental Health need to carefully consider these findings, and reconcile their own future planning and policy recommendation with these new research findings.

(Disclaimer – This writer strongly recommends that any questions that might arise from this article relating to your own particular medical situation be discussed between you and your physician.)

Benedict is a patient advocate.

Shift to state funding of stem cell research

2010-09-07T15:31:00.001-05:00

Wisconsin State Journal - Opinion
Tuesday, September 7, 2010

I am a patient advocate who has been working for state funding of embryonic stem cell research since 2005. With the recent federal court’s action to block federal funding once again, I am struck by how Wisconsin still remains so dependent on such an exclusive funding source in spite of how erratic and unreliable it has become. Led by our governor, Wisconsin’s policy of "leaving stem cell research to the scientists" who depend on ever more increasing fickle federal grants alone does not seem to be working.

It is time to bring the citizens and their legislature into this equation. Our state legislature needs to approve state funding and low interest loans, attached to a “payback” to the taxpayer, if and when, Wisconsin’s stem cell research moves into the clinic. All Wisconsin citizens, but especially those who have family members injured or suffering from chronic diseases, have a right to a more flexible, diverse and stable public funding source for this life-saving research.

Such state funding, if only symbolic during these tough economic times, would be the best evidence possible that Wisconsin is truly committed to stem cell research. Those who are suffering daily from chronic diseases and the scientists who labor in the Wisconsin labs deserve nothing less. We should go one step further. Why doesn’t Wisconsin set a goal of having at least one clinically viable stem cell-based application in to the Food and Drug Administration for clinical trials by 2020?

Open Letter to DHS

2010-07-23T11:58:00.001-05:00

Madam Secretary, Ms. Karen E. Timberlake
Department of Health Services
1 West Wilson Street
P.O. Box 7850
Madison, WI 53707

Re: Action Recommendation
July 23, 2010

Dear Ms. Timberlake:

I am a retired social worker who regularly advocates for campaign finance reform, state funding of stem research, and mental health treatment. I spent most of my professional life working in a large state-wide human service agency, and for many years, conducted both inpatient and outpatient mental health outcome evaluations. My work has been published and previously I have done extensive consultation and training throughout the United States.

My work began early in the 1970s and into the new century. Most of my work can best be described as clinical outcome studies versus using broader quality of life or post discharge social functioning outcome indicators such as employment status, education, family and close social relationships.

In spite of the many years spent on mental health program outcome evaluations, when I recently read Robert Whitaker’s expose’, “Anatomy of An Epidemic” I admittedly felt so disappointed with myself, with my profession, with Wisconsin’s Department of Health Services, Wisconsin Council on Mental Health, the National Institute of Mental Health, and especially, with the National Alliance on Mental Illness.

If any patient advocacy organization should have been informed and aware of what is really going on downstream, and in the trenches, with respect to long term drug-based patient treatment outcomes, it surely should have been NAMI-National. Particularly when their rhetoric for evidenced based treatment practices and outcome measures are touted so vociferously It’s hard for me to believe that even they too were duped.

Probably there is enough blame to go around. Robert Whitaker blames the American Medical Association, National Institute of Mental Health, the American Psychiatric Association and the national media. Whitaker brings to the table the cogent fact that over a dozen good scientific long-term outcome studies have been done over the past two decades. (A brief summary of these outcome studies are included further along in this letter.)

Whitaker reports that the findings from all of these scientific long term studies have been deliberately held back and out of the public media by NIMH and the APA, and I would have to add here by NAMI National as well. While these are published studies and appeared in professional journals for the most part they were never disseminated to the general public in any form and never in medical school curriculums.

Essentially what these studies have found was that those patients treated with drugs lag far behind those who were treated without medication on several broad key outcome indicators: employment, education/training, family and other close relationships, and most telling, the percent that maintained their community status without any further dependency on medication.

These very credible, scientific research findings showed that those similarly impaired and without drug treatment resided in their community for much longer periods. And many more no longer required any further medication and still remained in the community for the remainder of their lives.

As a patient advocate what really disturbs me the most is that our patients and their families were also kept uninformed of these long-term outcome findings. Even you and I, their service providers, who have spent long careers in mental health care were deprived of such outcome research knowledge until now. (Actually, about a decade ago, this same writer in an earlier book, “Mad In America” first attempted to raise serious questions about the state of our mental health system and about the motives of those who would become the most economically and professionally disadvantaged if there were unfavorable long term drug-based mental health outcomes: NIMH, APA, psychiatrists, and the pharmacology industry.)

Most regrettably for these very same reasons mental health consumers and the public-at-large typically now have much less confidence in your professionally trained social worker who does mental health family counseling. After all they have no claim to a magic bullet to “cure” you.

Actually Whitaker found much evidence that psychosocial and behaviorally treated patients, versus drug-based treated patients, had consistently higher long term outcome scores. This was so for both inpatient and outpatient services and for both adults and children.

Below is a brief summary of these, until now, very elusive long-term treatment outcome studies:

1992 - Schizophrenia outcomes are much better in poor countries like India and Nigeria, where only 16 percent of patients are regularly maintained on anti-psychotics, than in the United States and other rich countries where continual drug use is the standard of care.
World Health Organization

1995 - In a six-year study of 537 depressed patients those who were treated for the disorder were nearly seven times more likely to become incapacitated than those who weren’t, and three times more likely to suffer a “cessation” of their “principal social role.”
NIMH

1998 - Antipsychotic drugs cause morphological changes in the brain that are associated with worsening of schizophrenia symptoms.
University of Pennsylvania

1998 - In a World Health Organization study of the merits of screening for depression, those diagnosed and treated with psychiatric medications fared worse---in terms of their depressive symptoms and their general health---over a one-year period than those who weren’t exposed to the drugs.
WHO

1999 - When long-term benzodiazepine users withdraw from the drugs, they become “more alert, more relaxed, and less anxious.”
University of Pennsylvania

2000 - Epidemiological studies show that long-term outcomes for bipolar patients today are dramatically worse than they were in the pre-drug era, with this deterioration in modern outcomes likely due to the harmful effects of antidepressants and antipsychotics.
Eli Lilly; Harvard Medical School

2001 - In a study of 1,281 Canadians who went on short-term disability for depression, 19 percent of those who took an antidepressant ended up on long-term disability, versus 9 percent of those who didn’t take the medication.
Canadian Investigation

2001 - In the pre-drug era, bipolar patients did not suffer cognitive decline over the long term, but today they end up almost as cognitively impaired as schizophrenia patients.
Sheppard Pratt Health System in Baltimore

2004 - Long-term benzodiazepine users suffer cognitive deficits “moderate to large” in magnitude.
Australian scientists

2005 - Angel dust, amphetamines, and other drugs that induce psychosis all increase D2 HIGH receptors in the brain; antipsychotics cause this same change in the brain.
University of Toronto

2005 - In a five-year study of 9,508 depressed patients, those who took an antidepressant were, on average, symptomatic nineteen weeks a year, versus eleven weeks for those who didn’t take any medications.
University of Calgary

2007 - In a fifteen-year study, 40 percent of schizophrenia patients off antipsychotics recovered, versus 5 percent of the medicated patients.
University of Illinois

2007 - Long-term users of benzodiazepines end up “markedly ill-to extremely ill” and regularly suffer from symptoms of depression and anxiety.
French Scientists

2007 - In a large study of children diagnosed with ADHD, by the end of the third year “medication use was a significant marker not of beneficial outcome, but of deterioration.”
The medicated children were also more likely to engage in delinquent behavior; they ended up slightly shorter, too.
NIMH

2008 - In a national study of bipolar patients, the major predictor of a poor outcome was exposure to an antidepressant. Those who took an antidepressant were nearly four times as likely to become rapid cyclers, which is associated with poor long-term outcome.
NIMH

Inasmuch as the Department of Health Services’ goal is to make Wisconsin a national
Leader in reforming health care, and

Inasmuch as, The Wisconsin Council on Mental Health and its Adult Quality Mental Health Committee is legally mandated to evaluate and review Wisconsin’s mental health system’s progress towards achieving improved outcomes and the adequacy of mental health services in the State of Wisconsin under 51.02 Wisconsin Statutes and Public Law 102-321, and

Inasmuch as, “The purpose of the Council is to assist the State in the planning, development and implementation of a comprehensive mental health system, and

Inasmuch as, The Goal of the Council is “to facilitate (patient) recovery through independence, productivity, integration into the community as well as to advocate for and promote wellness, prevention, and early intervention, and

Inasmuch as, “the work of the Department of Health Services, Division of Mental Health and Substance Abuse Services is to improve life expectancy and health outcomes for individuals with these (mental health) conditions, and

Inasmuch as I am a citizen of the State of Wisconsin and laboring as a patient advocate on behalf of mental health reform, and

Inasmuch as, “We need to become better informed about the long-term outcomes literature briefly reviewed in this letter and most cogently laid out for all to read in Robert Whitaker’s new book, Anatomy of An Epidemic, and

Inasmuch as, we need to talk about what is truly known about the biology of mental disorders, about what the drugs actually do, and about how the drugs increase the risk that people will become chronically ill, and

Inasmuch as, if we in the State of Wisconsin could have that discussion, then change would surely follow.”

I, William R. Benedict, do formally request that the Wisconsin Council On Mental Health evaluate the above enclosed long term mental health outcome findings and evaluate their mental health policy implications for DHS and for suffering families throughout Wisconsin, and report back to the DHS Secretary, Governor and Wisconsin State Legislature its recommendation in a formal report not later than by July 30, 2011.

Most sincerely,

William R. Benedict, ACSW

cc: Governor Jim Doyle, Senator Mark Miller, Senator Scott Fitzgerald, Rep. Jeff Fitzgerald, Rep.Michael J. Sheridan, John Easterday, Jackie Baldwin, Mary Newbauer, Corrie Briggs, Geoff Greiveldinger, Lania Syren, Michael J. Fitzpatrick, Marc Herstand, Jan Greenberg, Diane Greenly

Stem Cell Article Index

2010-07-03T12:55:00.003-05:00

The following stem cell articles appear in this blog:

July 21, 2010 - Declaration of Cooperation Brings Hope
June 23, 2010 - Ownership of human tissue a big issue in curbing health costs Cap Times
April 23, 2010 - Wisconsin’s Annual Stem Cell Symposium Notes
April 2, 2010 - Stem Cell News Alert – 2010 Annual Stem Cell Summit
March 21, 2010 - (Stem Cell) Record’s Request Revealing - WSJ
Feb 5, 2010 - Obama’s Tax Proposal
Oct 10, 2010 - Fail-safe clause of intellectual property law has been ignored to citizens’ detriment. The Cap Times
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Sept 15, 2009 - Stem Cell Awareness Day
July 27, 2009 - New prez affects Wisconsin’s Discovery Institute The Capital Times
May 22, 2009 - Cures for chronic diseases will shake up system The Capital Times
May 9, 2009 - Action steps for chronic disease health advocacy & education associations
May 13, 2009 - If not now, then when? The Capital Times
May 3, 2009 - Protect Wisconsin’s Cutting Edge Science WSJ
April 7, 2009 - Science without ideology: The future of stem cell research
April 3, 2009 - State Funding of stem cell research: A public health care benefit for all citizens
---------------------------------------------------------
Jan 4, 2008 - National Association of Social Workers, Wisconsin Chapter Member Request Change in state policy on stem cell research
Oct 19, 2008 - Stem cell research “gold standard” resource in Wisconsin CWAG/Advocate
Oct 2008 - Wisconsin’s stem cell initiative needs strategic plan WSJ
April 28, 2008 - Tier 4 insurance plans are a pretext for what will follow
April 2, 2008 - Let’s follow California’s lead in health care costs The Capital Times
Mar 24, 2008 - A public health care benefit for all Wisconsin’s citizens
Feb 11, 2008 - Governor’s speech misses mark on stem cell innovation WSJ
Oct 3, 2008 - Consider fairness in stem cell research WSJ
Sept 9, 2008 - Demand payback on biotech strategy WSJ
July 21, 2008 - State must protect investment in stem cell research The Capital Times
June 26, 2008 - Legislature: Commit on stem cell research WSJ Your Views
Feb 2008 - The Stem Cell Initiative is the Public’s Business

Dec 6, 2007 - Stem cell debate is needed WSJ
Oct 19, 2007 - Now is time to set up oversight WSJ
Oct 18, 2007 - Make sure taxpayer gets payback from funding stem cell research The Capital Times

Dec 15, 2006 - Cutting edge policies for cutting edge science WSJ
Nov 25, 2006 - Taxpayers need state’s stem cell investment WSJ

My email address is: bergentown@sbcglobal.net

Ownership of human tissue a big issue in curbing health costs

2010-06-23T09:06:00.002-05:00

Capital Times - Guest Column

Wisconsin taxpayers and health care groups who are following the recent public interest challenges to UW Wisconsin’s human embryonic stem (ES) cell line patents may not be fully aware of the much larger and more fundamental issues that are at stake.

Should human body parts or tissues be patented and then bought and sold to the highest bidder in the marketplace? Human tissue samples are taken from blood tests, biopsies or during surgeries. As citizens how many of us really know how many tissue samples we have given away or how they were used? Are signed informed consent agreements now used in the donation process legally binding? Lastly, should patients be compensated for allowing another to use her or his human tissue samples?

Answers to these and related questions are rarely simple to grasp or answer and often remain confusing. Therefore, as a retired social worker and regular patient advocate for state funding of stem cell research, I was delighted to read Rebecca Skloot’s award winning book, “The Immortal Life of Henrietta Lacks.” While this book reads like a gripping novel it is non-fiction and contains both easily understood scientific information and a cogent narrative about the way science and our health care system interacts with the public.

The 1980 Byah/Dole (intellectual property) Act supports the present practice of using public tax dollars and our citizens’ raw materials – cells and genes - for scientific innovations and then transforms them into private property and the market place. Such a patent system takes away public control, decision-making and accountability and gives it to scientists whose salaries are paid for by you and me.

The result is that both the state of Wisconsin and individual citizens having to pay twice for their health care: First, to provide the university labs and salaries before a bio miracle invention occurs. And again, when they have to pay for subsequent exorbitantly priced commercial medications. Presently there is no direct monetary or in-kind payback either to the state or to the individual taxpayer or health care consumer.

With respect to giving human sample tissue to doctors, hospitals or universities, Skloot found that indeed only a few of us presently know when and how often we have given away our human tissue or know how it was used.

This is so for at least two reasons: First, written and signed informed consent agreements and National Institute of Health bioethical guidelines are not legally binding or based upon statute. Instead the human tissue donation process is administered and carried out at the local level and in an inconsistent fashion. The selling of tissue samples are presently prohibited or discouraged based largely on the belief that payments or royalties directly to patients would act to exploit the poor and would also unnecessarily complicate and stifle communication between scientists.

Both reasons are false but largely assumed or accepted by the public based upon the perspective of the scientists and private investors alone. In fact increasingly even the research community is beginning to advocate for fewer patents particularly when dealing with biological or natural occurring materials such as stem cells and genes. Many believe that patenting of such natural products versus research tools or processes are the real culprits for delaying research and preventing open communication among their peers.

I believe it is only a short time period before a more complimentary balance between health care research and health care delivery systems become more integrated and mutually supporting. Policy makers will have to become more fully engaged, however, rather than sitting on the sidelines and allowing only scientists and free market investors to manage this increasingly large piece of our public health care dollar. This more aggressive role for our state government will happen only when more and more taxpayers begin to look upstream and carefully consider what is causing ever increasing higher health care prices. I believe reading Rebecca Skloot’s stellar book would greatly facilitate beginning such a public examination.

Finally, I believe citizens will soon also assume a larger role in how their human tissue will be used in the lab or the marketplace and demand a fair price. The present practice of exploiting a citizen’s body parts or tissue for mere profit which is a business involving billions of dollars each year, will be no more.

Benedict is a retired social worker and blogs at danecountyalmanac.blogspot.com.

Declaration of Cooperation Brings Hope

2010-06-21T11:56:00.002-05:00

The recent Declaration of Cooperation between California and Wisconsin’s stem cell programs was great news to myself and all who live daily with debilitating diseases.

This latest declaration strengthens the already existing Interstate Alliance on Stem Cell Research in which UW is already a member. The signing for this event was held in California at the annual meeting of the Society for Stem Cell Research. SSCR is an international organization and a world leader in stem cell collaboration.

The California compact with Wisconsin creates a framework for joint funding, and identifies opportunities to further the advancement, promotion and development of stem cell therapies. This is exactly what we all want!

It is reassuring and to Wisconsin’s credit to be reaching out both in sharing its scientific know how while at the same time learning from its peers.

The California stem cell program is a 3 billion dollar public initiative which is using state bonds to fund the construction of stem cell research facilities and to recruit the finest scientists in the world.

By requiring matching funds California has demonstrated that by contributed public dollars via grants and loans it has successfully harnessed and stimulated both public and private stem cell investment without contributing one dime to the state’s deficit.

It also remains a model for both its public accountability and transparency. This is so in part due to its inclusion of patient advocates into its governing structure and an outcome-oriented strategic planning and reporting process like none other.

Benedict is a patient advocate for stem cell research and blogs at: danecountyalmanac.blogspot.com

Stem Cell Symposium Notes

2010-04-23T13:27:00.001-05:00

On April 21, 2010 I attended UW-Madison’s Annual Wisconsin Stem Cell Symposium. Called, “The Road to Stem Cell Applications,” these observations have to do with some of the challenges discussed about the road ahead to further stem cell applications.

This meeting was held at the Bio Pharmaceutical Technology Center in Madison, WI.

Some participants expressed concern that the Food & Drug Administration has been too slow in adapting their standards and consultation to better accommodate the fast growing and robust stem cell research field. One speaker feared that too many FDA rules could possibly dampen the researcher’s inquisitive spirit. On a related issue, it was also noted that if standardization sets in too fast, certain otherwise significant secondary discoveries might not be pursued vigorously enough.

A new endpoint --- ending disease --- is the public’s goal for stem cell research. As one speaker said, “from being cool to the real thing.” The tension produced by the public’s desire to raise the bar for stem cell science from disease amelioration to ending diseases has become increasingly palatable. In spite of the delays owing to certain ethical and political policy constraints we have now arrived at the preclinical evaluation stage.

To date only one human embryonic stem cell therapy (Phase One) trial has been approved by the FDA. It is being conducted by the Geron biotech company located in Menlo, California. Geron funded UW’s Dr. Jamie Thomson’s human stem cell line discovery and later received a license from the Wisconsin Alumni Research Foundation to use Thomson’s stem cells.

Geron’s President and Chief Executive Officer, Dr. Thomas B. Okarma spoke at the Symposium and reviewed the history of Geron’s cell-based therapy project for patients with thoracic injuries. Their FDA application was over 22,000 pages and has already cost over forty million dollars. He emphasized how important it is for the greater stem cell community that his company get this trial done right the first time.

Several speakers suggested that continuous cooperation and dialogue among all stem cell stakeholders, including industry, academia and disease advocates, would be required to reduce existing tensions.

It was also noted that before embryonic stem cell therapies can move from the bench to the clinic, extensive education will be required to bring health professionals up to speed about this new and more complex cell-based therapy. The challenge facing scientist today is to move from individual patenting and marketing strategies to greater collaboration among all the disciplines involved. The investors, including taxpayers, are all demanding greater efficiency, effectiveness and accountability from the scientific community.

STEM CELL NEWS ALERT – Coming Soon - 2010 Annual Stem Cell Summit

2010-04-02T02:13:00.001-05:00

Attention: All stem cell advocates: Mark your calendar for October 4-6, 2010

The Genetics Policy Institute will hold its annual World Stem Cell Summit in Detroit, Michigan on October 4-6, 2010. This is the number one stem cell conference held each year and stem cell advocates like you will not want to miss it.

I was indeed privileged to attend and cover the 2008 Summit held here in Madison, WI. Click on the year 2008 and you can read: “Consider fairness in stem-cell push.” Your comments will be appreciated.

As advocates once again we will have the opportunity to unite with stem cell scientists, policy makers, funding sources and other stem cell stakeholders from throughout the world.

For more information visit the Genetics Policy Institute website or Google: World Stem Cell Summit. I look forward to seeing you in Detroit.

William R. Benedict

Records Request Revealing

2010-03-21T08:17:00.000-05:00

Wisconsin State Journal – Opinion Page
Focus: Sunshine Week

As a patient advocate for state funding of stem cell research and who believes that all such public funding should include a payback provision for the Wisconsin taxpayer, I requested in writing a public document from the Wisconsin Department of Commerce.

This was a low-interest, $1million loan agreement between WDC and Cellular Dynamic International Inc. Upon careful review I found no such public benefit provision of any kind except for the repayment of the loan along with 2 percent interest fees.

While there is strong community consensus in Wisconsin that stem cell research has tremendous potential to reduce suffering and make health care more affordable, there appears at this time little if any awareness that such public support should address the issue of taxpayer payback

California requires if their grantee’s product or patent results in some commercial
profit, some percent of these profits, after costs have been met, will be returned to the taxpayer either in cash or in kind, for example, drug discounts.

Obama's Tax Proposal

2010-02-05T14:47:00.002-06:00

Wisconsin taxpayers and health care consumers in Wisconsin may soon be given some relief from ever increasing and exorbitant drug costs. This is so with the President’s recent tax proposal to place a tax on certain “patents and other intangible assets parked in overseas tax heavens by American companies.” This bad news, especially for the pharma industry, immediately follows the now likely demise of the Administration’s health care bill and the quid pro quo agreements between big pharma and Obama Administration.

With the end of health care reform for at least the short term, there exists the distinct possibility at least that along with proposed pharma tax, government Medicare drug negotiations, the importation of much cheaper Canadian drugs, and the closing of off-shore corporate tax havens, are all popular reforms that can now be put back on the table. Presently under the guise of promising increased jobs and a more competitive drug industry, some of the excesses of big pharma may now finally be addressed. Such actions if taken now would also act to significantly, I believe, improve the President’s popularity as we prepare to enter the congressional elections this fall.

If any corporations are in need of reform it is certainly the pharmaceutical industry. In 1980 our government passed the Bayh-Dole Act which gave away the people’s right to the intellectual property created by federally funded research and innovation. Since then intellectual property rights have been given freely, with few enforced constraints, to the inventor and university-based patent custodians who sell licenses to the highest bidders and for the greatest profit.

Presently the Wisconsin taxpayers pay first to create potentially life saving scientific breakthroughs at UW’s life sciences department only to have them snatched up by big pharma which transformed them into the most commercially profitable drug versus choosing one for development with the highest common good or need. Unfortunately in most instances prices are set beyond what many can reasonably pay. This is true not just in third world nations but also for many working Americans right here in Wisconsin.

If there was ever a time for disgruntled Democrats, independents and working class Americans to call or write their congressional representatives and our President, it is now. Tell them that if its now impossible to have universal health care then lets do the next best thing. Reform the financial system, reform individual components of the health care system to the extent possible, including the enforcement provisions of the Bayh-Dole Act, pass the right for the federal government to negotiate Medicare drug costs, pass the importation of cheaper Canadian drugs, and begin to enforce reasonable drug pricing for all.

Benedict is an advocate for state funding of stem cell research and blogs at: danecountyalmanac.blogspot.com.

Fail-safe clause of intellectual property law has been ignored to citizens’ detriment

2009-10-10T02:42:00.000-05:00

Capital Times: Saturday, October 10, 2009

Our country’s financial and health care crisis has caused us to pause and reexamine what is still working and what needs to be fixed in our economy. Regardless of our political persuasions, there are few citizens who still doubt that our financial system is broken and in serious need of repair.

For most Americans, it’s no longer a question of is change needed but if we will have the good sense to act decisively now both in terms of meaningful regulation and strict and steady enforcement.

This painful re-examination has already begun and the most important thing we have learned is that many of the policy safeguards designed to prevent the economic collapse already existed but were flagrantly ignored by all three branches of our government.

I would like to share one example: In 1980 Congress past the Bayh-Dole Act. Its purpose was to provide our free market system with greater intellectual property incentives to more effectively develop and commercialize scientific discoveries, particularly in the rapidly emerging biotechnology field.

Moving away from federal ownership of federally supported research, Bayh-Dole shifted the ownership of intellectual property, both the right to patent and license inventions, from the federal government to the scientist-inventor and to universities.

Soon after this bill’s passage, through executive branch action, patent and licensing rights were also extended to large mega corporations.

Recognizing the potential monopolistic pitfalls and huge conflict of interest involved in this potential multi-billion dollar windfall to private enterprise, and the opportunities for abuse, the authors of Bayh-Dole included a fail-safe mechanism called “march-in” rights

This provision allowed the executive branch and its federal departments who fund public and private research to intervene and remove an exclusive license when the holder refused to bring the invention or product to market in a timely fashion or abused its commercialization through exorbitant pricing.

Bayh-Dole is a classic example of a federal act with tremendous potential for both good and bad that has been ignored for nearly 30 years, leaving it without proper congressional oversight, executive and judicial enforcement.

Congress has done absolutely nothing to significantly reform Bayh-Dole in a manner that would make the government’s march-in rights provision more clear and actionable. To date the executive branch has not once intervened, even in the face of ever-higher drug prices by large pharma, to enforce reasonable price setting. Similarly the federal court system has blatantly ignored the clear legislative intent of this act to provide both consumer access to new innovations and fair pricing.

The history of the Bayh-Dole Act is just one of many instances where well intended laws were passed but through time and neglect have been ignored and rarely if ever enforced. The result of such inaction has also been a major contributor to our country’s present health care crisis. This is largely due to public servants who are forever pandering to special interests over our common welfare.

Benedict is a retired social worker and resides in Madison. He blogs at danecountyalmanac.blogspot.com

Comprehensive Campaign Finance Reform Legislation Needed

2009-10-08T02:20:00.001-05:00

Public Testimony
Committee on Elections and Campaign Reform

My name is William R. Benedict. As a proud citizen of Wisconsin, it is again a privilege to have this opportunity to testify before the Assembly Elections and Campaign Reform Committee. Thank you!

I am a retired social worker who is now working full time as a citizen advocate for campaign finance reform and state funding of stem cell research. My special constituencies are myself, my family and the citizens of the State of Wisconsin. For more, Google my blog: Dane County Almanac and my thirty plus postings on campaign finance reform in Wisconsin.

I am here this morning because I sincerely believe that our body politic is sick at the core and it is urgently in need of comprehensive campaign finance reform. Our legislature has a systemic and insidious disease so strong that it infects our otherwise most dedicated public servants. Wisconsin voters know deep down in their soul that their vote no longer counts. They believe that you have sold them out to those who pay for your election term after term and now have put in jeopardy our sacred political freedom.

Again, it hurts me this morning to have to say that until you pass comprehensive campaign reform, I believe you will continue prostituting your office in order to have your election campaigns supported and paid for by special interests rather than by the common citizen and taxpayer.

Not until every qualified Wisconsin citizen can run for public office regardless of how much money they have will we have a state government by the people and for the people. I urge you and all of your Assembly and Senate colleagues to take the strong medicine needed to purify this political cesspool.

Start right now and begin this democratic crusade by passing AB 40 next week and then get to work and pass comprehensive campaign reform for all elected public offices.

Thanks again for this opportunity to speak.

Stem Cell Awareness Day

2009-09-15T00:17:00.000-05:00

Stem Cell Awareness Day is September 23rd. The idea of celebrating SCAD is to inform the public about stem cell science and to generate grass roots support for research in this field. The future of stem cell research holds great promise for curing a variety of chronic diseases such as diabetes, heart, arthritis, and Alzheimer, Parkinson’s, cancer and neurological.

Scientists are presently seeking ways to grow stem cells into a wide range of human cells, tissues and organs. Stem cells may produce revolutionary changes in regenerative medicine seen only rarely in human history.

My family, like most others, has experienced the daily heart aches and challenges caused by one or more chronic diseases. For the past four years I have dedicated much of my time to learning about recent genetic and stem cell medical breakthroughs.

My decision to become a patient advocate for stem cell research funding and regenerative medicine is both personal and public. I want to help bring an end to the generational cycle of suffering inflicted on my family now and in the future and publicly, because the treatment and care of chronic diseases cost the taxpayers billions and billions of dollars each year.

Last year America spent $2.3 trillion on health care costs; 75% of this figure was due to chronic (presently incurable) illnesses. Northing lowers medical costs like curing a disease. This money could better be spent on education and more cell-based science.

I am convinced that our life science and technology has now reached the point of soon ridding us of our most debilitating and costly diseases. I am also strongly convinced that most citizens, if given the same time and opportunity as I have had to study this issue, will also reach the same conclusion.

Won’t you join my family and me and celebrate Stem Cell Awareness Day on Thursday, September 23rd. For ideas on how you or your health care organization can advocate for stem cell funding, see Benedict’s blog, Danecountyalmanac/Stem cell funding reform/Action steps for chronic disease advocacy and education organizations.

Bayh-Dole Act in need of reform

2009-08-19T01:28:00.001-05:00

Our country’s financial crisis has caused us to pause and reexamine what is still working and what needs to be fixed in our economy. Regardless of our political persuasions, there are few citizens who still doubt that our financial system is broken and in serious need of repair.

For most Americans, it’s no longer a question of if change is needed but if we will have the good sense to act decisively now both in terms of meaningful regulation and strict and steady enforcement.

This painful reexamination has already begun and the most important thing we have learned is that many of the policy safeguards designed to prevent the economic collapse already existed but were flagrantly ignored by all three branches of our government.

I would like to share one example: In 1980 Congress passed the Bayh-Dole Act. Its purpose was to provide our free market system with greater intellectual property incentives to more effectively develop and commercialize scientific discoveries, particularly in the rapidly emerging biotechnology field.

Moving away from federal ownership of federally supported research, Bayh-Dole shifted the ownership of intellectual property, both the right to patent and license inventions, from the federal government to the scientist-inventor and to universities.

Soon after this bill’s passage, through executive branch action, patent and licensing rights were also extended to large mega corporations as well. Recognizing the potential monopolistic pitfalls and huge conflict of interest involved in this potential multi-billion dollar windfall to private enterprise, and the opportunities for abuse, the authors of Bayh-Dole included a fail-safe mechanism called “march-in” rights

This provision allowed the executive branch and its federal departments who fund private research to intervene and remove an exclusive license when the holder refused to bring the invention or product to market in a timely fashion or abused its commercialization through exorbitant pricing.

Bayh-Dole is a classic example of a federal act with tremendous potential for both good and bad that has been ignored for nearly 30 years, leaving it without proper congressional oversight, executive and judicial enforcement.

Congress has done absolutely nothing to significantly reform Bayh-Dole in a manner that would make the government’s march-in rights provision more clear and actionable. To date the executive branch has not once intervened, even in the face of ever higher drug prices by large pharma, to enforce reasonable price setting. Similarly the federal court system has blatantly ignored the clear legislative intent of this act to provide both consumer access to new innovations and fair pricing.

I believe the history of the Bayh-Dole Act is just one of many instances where well intended laws were passed but through time and neglect have been ignored and rarely if ever enforced. The result of such inaction has been a major contributor to our country’s present health care crisis. This is largely due to public servants who are forever pandering to special interests over our common welfare.

New prez affects Discovery Institute

2009-07-27T02:16:00.001-05:00

Wisconsin State Journal
Your Views

Upon the completion of the Wisconsin Institutes for Discovery in December 2010, UW-Madison will take over the “public” Wisconsin Institute for Discovery, while the private, non-profit side, the Morgridge Institute for Research, will share the building.

This private/public arrangement was designed largely in response to President George W. Bush’s executive ban on federal funding for all but a very few embryonic stem cell lines. The ban called for separate labs, equipment and accounting systems to assure that our government was not in any way complicit in the destruction of embryos. With the election of President Obama these ideological barriers and the stigmatization of this science has largely been removed and now these onerous rules are only relics of the past.

Unfortunately this pre-Obama policy environment continues to shape the structure and programmatic research agenda for UW –WID. UW-Madison, supported by public funds, should rectify this situation through reexamination of the mission, structure and program direction of the institute. Special attention should be given to the effects of commingling the public and private institutes and the potential conflicts of interest.

As an advocate for state funding of stem cell research, I see this public discussion as a way to engage patients, their families, seniors and taxpayers to make this a “public” research institute. It’s not just a research issue but a public health one as well.

For more information on stem cell research reform and how you to get involved, see: danecountyalmanac.blogspot.com.

I need your help!

2009-07-23T02:18:00.002-05:00

I need your help!

Will you post my blog address link on your website?

Upon considering the ever increasing role now being played by Web sites and other forms of electronic media I had this idea. I wanted to alert your health advocacy organization to my blog address: danecountyalmanac.blogspot.com. Under one of its categories, “Stem Cell Research Funding Reform” you will find a robust list of recently published articles relating to our national health care crisis and how U.S. funding and other policies currently contribute to this crisis.

As a family advocate for state and federal funding for stem cell research, I am attempting to alert you and your organization to perhaps the most significant policy issue that your organization will have to make during its next strategic planning cycle.

Should we publicly and explicitly declare in our strategic plan mission statement the goal of curing your particular cell-based chronic diseases by some set date, or perhaps more modestly at least at the earliest date possible? Such action will challenge all chronic disease and health advocacy organizations in the weeks and months ahead. Advocating for greater research and health care services alone seems far too narrow and anemic.

Most of my posts are copies of my op-ed articles that have appeared largely in Wisconsin’s state-wide print media and aimed toward rallying state-wide and national organizations like yours toward advocating for persons with chronic cell-based diseases.

Two of my most recent articles concern Wisconsin’s recent National Alliance for Mental Disorders (NAMI) Grading results and an invitation to chronic disease organizations to join our ever growing stem cell coalition. Presently we already have five such state-wide organizations aboard with several others now pending. I am requesting that your local, state and national organization consider placing on its Web site a listing of blog address links that regularly follow and addresses stem cell research as an increasingly important public health issue.

I would hope that such a listing of blog links would include my own and contribute to a national conversation concerning this critical research and country’s health care crisis.

My blog presently includes a list of Action Steps that organizations like yours might consider when reviewing and updating its strategic plan. You will note that this writer now believes that it is time for organizations like yours to move to the next step.

Develop a policy statement which recognizes the potential discovery and development of a cell-based cure for your particular chronic disease and to get out front on this issue beyond supporting federal and state research funding alone. Anything less than an eventual cure for such diseases is from my perspective a disservice to our members who struggle and suffer daily with these diseases.

I hope you will take the time to view my blog and consider this request. Advocacy always begins with the first step. For most organizations that step is building a greater awareness and mutual collaboration and alliances. I hope my blog and many others like them together will help add to our united VOICE.

William R. Benedict, ACSW
bergentown@sbcglobal.net

A public health care benefit for all Wisconsin citizens – Will you help!

2009-06-25T03:06:00.002-05:00

By now we know that solving Wisconsin’s ever-growing home health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.

In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.” I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California.

When we weigh the billions and billions of dollars to be both made and saved through miracle cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy issue now before us.

Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.

Wisconsin citizens should follow California’s lead and pass legislation now that supports federal and state funding of stem cell research in Wisconsin along with public health care benefit safeguards.

“Public health care benefit safeguards” can mean anything from requiring a successful grantee to return 25 percent of their profit back on their billion-dollar stem cell-based drug discovery to the state of Wisconsin to be put in a special patient health care fund.

Or a successful grantee would simply be required to submit a plan to ensure affordable prices for all Wisconsin citizens, especially the medium-and-low income and underserved populations.

The bottom line is that you and I as Wisconsin citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.

Now is the time for Wisconsin policy makers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.

The answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives now being proposed.

Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.

Without grass roots action now by all Wisconsin citizens we should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers.

Please join the number of individuals and grass root organizations who have decided to contribute their VOICE to this discussion. Send your name, the name of your organization, address and phone number to: bergentown@sbcglobal.net. For more information and to learn what others have done.

“I or my organization supports federal and state funding of stem cell research in Wisconsin, along with public health care safeguards, with benefits affordable to everyone.”

William R. Benedict, Madison
Stem Cell Funding Coalition
608-249-5672
bergentown@sbcglobal.net

Cures For Chronic Diseases Will Shake Up System

2009-05-22T05:30:00.001-05:00

The Capital Times :: OPINION :: WEB

May is mental health month, and it's a time once again when mental health and other chronic disease advocacy and education groups should consider anew their journey and hopes for the future. As a father of a son with mental illness, I ask all Wisconsin citizens to consider the following questions.

Does your organization's strategic planning extend to the day when medical therapeutics do more than mitigate chronic disease symptoms but actually cure the disease? Can your organization envision a not-too-distant time when your service recipients will suddenly ask, "Why didn't you inform us that our illness might someday be cured through stem cell-based medications and therapies?" "What actions did your organization take to ensure that our cell-based medical needs and health care rights were protected during the early developmental phase of this research?"

If there is indeed a possibility of a cure -- and the scientific community now clearly believes there is -- it is now ethically and morally incumbent on all of us to begin to educate ourselves about such research and begin now to educate our membership about its revolutionary healing potential. No reputable physician or stem cell research scientist today would any longer consider such miracle therapy a fantasy. Today all leading university research and medical centers and increasingly the large pharma industry have established their very own cell-based regenerative medicine and research centers.

Chronically ill members need real hope of a better future for themselves and their families, especially when there is now empirical research evidence on which to base this hope. We have now reached the point when it's not if but only when such miraculous therapies will exist.

Presently patient-specific stem cells are being used to diagnose the onset of chronic diseases and for testing cell-based drugs for human toxicity and immune reactions. Stem cell research-centered biotech companies and treatment providers are growing by leaps and bounds. Worldwide, hundreds of stem cell clinical trials are now in place. (To protect the consumer from unsafe and unproven stem cell treatment, see the International Society of Stem Cell Research's "Patient Handbook on Stem Cell Therapies.") In Madison, long before there was any scientific consensus about the etiology of mental illness, that which is now called the National Alliance on Mental Illness pioneered what it believed was the genetic and neurological cell-based origin of this disease. From that point on the blaming of the patient and/or the patient's family for this disease stopped. Now is a similar moment in Wisconsin's mental health history when change is on the horizon.

To prepare for this not-too-distant future, perhaps the first step would be to establish a goal of becoming more informed about stem cell research, and its potential application to your particular disease group. A second goal might be collaborating with your university regenerative medicine center and/or the stem cell-centered biotech company in your area.

Often the elixir for strategic planning and a breakthrough is hope. Like the people we advocate for, we are often left stunted and frustrated without this positive emotional impulse.

For more information about what action your organization can take right now, visit my blog: danecountyalmanac.blogspot.com.

William R. Benedict of Madison advocates for stem cell research funding.

Action steps for chronic disease health advocacy and education organizations

2009-05-22T02:23:00.000-05:00

What action can your health advocacy organization take right now to ensure your service constituency’s cell-based health care needs and rights are protected during the early stages of stem cell research and development?

Begin educating your membership about stem cell research and cell-based medications and other therapies? Begin to advocate in order for your members or constituent group to have a seat at the table when and wherever stem cell policy issues are discussed. Advocacy should occur at every stage of the stem cell research, translational, clinical trial and product development stages.

1. Advocate for stem cell collections with genetically diverse sources of cell lines

2. Collaborate with stem cell regenerative medicine and biotech centers

3. Ensure that public funding for stem cell research includes a revenue and/or health care benefit or payback.

4. Advocate for and participate in open stakeholder stem cell discussions and forums

5. Represent your membership on all stem cell oversight and advisory funding bodies.

6. Seek a variety of stem cell research funding sources including both the private and public sector.

7. Attend and/or testify at legislative stem cell committee hearings.

8. Advocate for alternative fair and equitable financial/business intellectual property models.

9. Advocate for the efficacy and safety of all stem cell research and clinical trials.

10. Encourage alternative licensing, product development and public funding models to promote fair, broad and affordable access to stem cell based diagnostics and therapies.

11. Offer educational resources and information on stem cell research and applications.

12. Offer education opportunities for stem cell donors and recipients.

13. Provide public education on stem cell efficacy and safety risks factors. (For additional advocacy and educational resources see my blog: danecountyalmanac.blogspot.com.

If Not Now, Then When?

2009-05-13T19:28:00.001-05:00

“A Call to Action for Chronic Disease Health Advocate Organizations”

Does your organization’s strategic planning time line presently extend to the day when medical therapeutics does more than simply help mitigate health care symptoms of your service clients or disease group and literally begins to cure their disease? Can your organization envision a not too distant time when your service members or clients will suddenly ask, “Why didn’t you inform us that our illness might someday be cured through miracle-like stem cell-based medications and therapies?” And, “What actions did your organization take to ensure that my cell-based medical needs and health care rights were protected during the early developmental phase of this research?

If there is indeed a possibility of a cure --- and the scientific community now clearly believes there is --- or any reason to hope for a cure through cell-based research and development, is it not now ethically and morally incumbent upon your organization to begin to educate itself about such miracle-like medical research and begin now to formally advocate and educate your membership about its revolutionary and healing potential? No informed reputable physician or stem cell research scientist today would any longer consider such miracle therapy a fantasy or an extremely unlikely health outcome.

Wasn’t it the practice of those who wanted to maintain serfdom and the caste system to continue to repress individual freedom and hope that would have otherwise changed their circumstances and their lives? Don’t our members need real hope of a better future for themselves and their families especially when there is now empirical research evidence on which to base this hope? We have now reached the point in time when it’s not if but only when such miracle-like therapies will exist.

Today all leading university research and medical centers and increasingly the large pharma industry have established their very own cell-based regenerative medicine and research centers. Is this not convincing proof that miracle stem cell therapies are just around the corner?

Presently patient-specific pluripotent stem cells are being used to diagnose the first beginning onset of chronic diseases and for testing cell-based drugs for human toxicity and immune reactions. Stem cell-research-centered biotech companies and treatment providers are increasing by leaps and bounds. Worldwide, hundreds of stem cell clinical trials are now in place. (To protect the consumer from unsafe and unproven stem cell treatment, see: International Society of Stem Cell Research, “Patient Handbook on Stem Cell Therapies.”)

After all, wasn’t it in Madison, WI, long before there was any scientific consensus about the etiology of mental illness, that which is now called NAMI, pioneered what it believed was the genetic and neurological cell-based origin of this disease? From that point on the blaming of the patient and/or her family for this disease stopped. Now once again is a similar moment in Wisconsin’s mental health history, when millions of chronically ill persons and their families are left without hope of ever being cured.

Does your present mission or long term strategic goal call for more than a disease mitigation, adjustment and maintenance model of health care or does it include the goal of total elimination of that particular disorder or disease? If not, why not? In order to protect your organization’s credibility should not an end point at least be envisioned?

To prepare for this not too distant future perhaps the first step would be to establish a goal of becoming a more informed organization consumer of stem cell research, and its potential application to your member or client needs. A second goal might include beginning collaboration with your university regenerative medicine center and/or the stem cell-centered biotech company in your area.

Have you ever asked yourself what often precedes strategic planning? Often the elixir for planning and a breakthrough is hope. Like the people we advocate for, without this positive emotional impulse we are often left stunted and frustrated.

For more information about what action your organization can take right now, visit my blog: danecountyalmanac.blogspot.com. My email address is: bergentown@sbcglobal.net

Respectfully yours,

William R. Bendict, MSW, ACSW
Family Advocate for public Stem Cell Research Funding

Protect Wisconsin’s cutting edge science

2009-05-03T16:38:00.001-05:00

Wisconsin State Journal – Opinion

A Wisconsin Technology Council study reports a 25-year slide toward weaker public support for higher education in Wisconsin. It reported a steady erosion of the infrastructure that supports academic research in Wisconsin, much of which lies in UW-Madison’s life sciences department. This downward spiral can be seen in the steady decrease in faculty, academic staff, course selections and laboratory sessions.

This erosion now threatens Wisconsin’s research and development foundation, best seen in the mediocre state funding of our greatest potential treasure --- stem cell research.

This situation threatens to weaken UW-Madison’s ability to compete for merit-based federal research grants, jeopardizing the receipt of millions of federal National Institutes of Health research dollars in the coming decade. The report states that Wisconsin’s total academic R&D spending at $805.8 million in federal, state and private sources, with the latter contributing a mere $109 million.

This statistic alone suggest to me that that Wisconsin investment in such research is not giving a sufficient and fair payback to the taxpayers, and until it does, Wisconsin’s investment in such research will continue to decrease.

To turn this situation around and re-establish Wisconsin’s position in academic research and development, I urge our governor and the Legislature to develop intellectual property laws that will protect and grow the Wisconsin taxpayers’ investment in academic research and development.

Such legislation exists in California, where millions of dollars raised through state bonds have already leveraged more in grants and loans into stem cell research and development.

Bill Benedict, Madison

Wisconsin State Funded Stem Cell Research Along With Public Health Care Safeguards

2009-04-28T23:13:00.001-05:00

An Open Letter and Invitation to Wisconsin Health Care Advocacy Organizations
Revised April 28, 2009

As a senior citizen of the State of Wisconsin whose family is suffering from three serious cell-based diseases and who has been working for both private and public funding for stem cell research, I am writing to your organization for support.

As a key health care stakeholder and advocacy organization I believe that your group can play a critical advocacy role at this early stage in Wisconsin’s stem cell research initiative. As an effective health advocate organization you know that every effort must be made to ensure that all Wisconsin citizens have equal and fair access to affordable cell-based medications and other health therapies.

Many organizations like your own have been fighting long and hard for your patients so that they will have more reasonably priced drugs and other treatments. Many of you already support federal health insurance programs and favor more universal health care for all of our citizens. Unfortunately there is still no assurance that this goal will be realized soon.

While we must continue to deal as quickly and directly as possible with the immediate health care crises, we must also look beyond the present health care crisis and take action now to make future stem cell drugs and therapies more affordable to all Wisconsin citizens. To do so citizen membership groups like yours need to support a more lasting and equitable solution to our nation’s health care problems.

Stem cell research is still in a nascent state and suffering from moral controversy and consequent funding delays. It’s fair to say that in many respects Wisconsin has been treading water while California and many eastern states that publicly fund this research continue to advance.

Although state surveys have consistently shown that 75 to 80 percent of Wisconsin citizens support stem cell research our state legislature offers no direct funding or policy platform that would ensure that you and I and all taxpayers will receive any tangible public health care benefit whatsoever from any Wisconsin stem cell research discoveries.

To date we have been promised only indirect trickle-down economic effects, including more jobs and a higher corporate tax base from our support. While this is a worthy and much needed economic benefit, it alone is far too narrow and short-sighted. If Wisconsin is to effectively manage its ever escalating and exorbitant health care costs we must act NOW. If we have the will, we will end the disenfranchisement of our most vulnerable and needy citizens of their basic human right to high quality and affordable health care.

A genuine public health care benefit in Wisconsin for the funding of stem cell research can be derived from legislating a fair portion of patent licensing fees and/or a percent of patent royalties be returned to the funding source, namely the State of Wisconsin.

In addition to the above, a broad community discussion on Wisconsin stem cell research should include the following:

Does your organization planning time line presently extend to the day when medical research does more than simply help mitigate the health conditions of your service clients or member group and literally begins to cure the disease?

Can your organization envision a not too distant time when your service members will suddenly ask, “Why didn’t you inform us that our illness might someday be cured through miracle-like stem cell-based medications and therapies?” And, “What actions did your organization take to ensure that my cell-based medical needs and health care rights were protected during the early developmental phase of this research.”

If there is indeed a possibility --- and the scientific community now believes there clearly is --- of a cure or any reason to hope for a cure through cell-based research and development, is it not now ethically and morally incumbent upon your organization to begin to educate itself about such miracle-like research and begin now to formally advocate and educate your membership about its revolutionary and healing potential?

After all, wasn’t it in Madison, WI, long before there was any scientific consensus about the etiology of mental illness, that which is now called NAMI, pioneered what it believed was the genetic and neurological cell-based origin of this disease? From that point on the blaming of the patient and/or her family for this disease stopped. Now is again a similar moment in Wisconsin’s mental health history, when millions of chronically ill persons, like my son and my family are left without hope of ever being cured.

Does your present mission or long term strategic goal call for more than a disease mitigation, adjustment and maintenance model of health care or does it include the goal of total elimination of that particular disorder or disease? If not, why not? In order to protect your organization’s credibility should not an end point at least be envisioned?

To prepare for this not too distant future perhaps the first step would be to establish a goal of becoming a more informed organization consumer of stem cell research, and its potential application to your member or client needs.

Will Wisconsin stem cell discoveries be made available to the public at reasonable prices and in sufficient quantities to all Wisconsin citizens? Will special considerations including discounts be given to low and medium income patients and other underserved groups?

Are policies needed to ensure that state supported stem cell scientists and biotech companies will pursue research and development into prioritized disease groups such as cancer, heart, diabetes, Alzheimer’s and Huntington’s versus pursuing stem cell products that have more immediate commercial potential for large markets? Or will Wisconsin citizens spend tax dollars to pay for cosmetic and other personal enhancing products for the rich and powerful while seniors and others struggle to pay for their most basic health care needs?

Has your organization considered the possible relationship between how bio-medical research is now being funded in Wisconsin and the exorbitantly high prices Wisconsin taxpayers must now pay for their medicines and therapies? Has your board’s policy planning council or elected representatives ever had a discussion regarding these three questions?

Who should determine whether a government funded invention should be patented? Who should determine in what manner patents should be licensed? And, who should profit from patent licenses and in what amounts? Should we not be encouraging open stakeholder discussion to identify and evaluate alternative intellectual property business models?

For a state that has now become known as the epicenter of stem cell research and who holds three broad embryonic stem cell patents, this is more than an intellectual property issue but a pivotal human rights issue when health care affordability and public budget expenditures are being weighed.

Will eventual stem cell clinical trials include a diverse population sample? Will these trials adversely discriminate against the interests of your constituency or membership?

Are policies needed to ensure that companies who use state funding direct their research into the widest ranges of illnesses, not just research for the most well-heeled disease advocates?

State innovation grants, tax credits and hosts of other public financial incentives have already been awarded or are now in the state’s administrative pipeline. This money is being spent without any health care policy safeguards or payback conditions whatever. Someone has said, “Asking grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the henhouse.”

If these stem cell policy issues are not currently on your organization’s radar screen, and do not now appear on your strategic planning priorities list, this neglect could be catastrophic for your membership down the road.

I am asking your board of directors to read this letter and weigh its importance to the members they serve. The biggest mistake you or your organization could make is to simply do nothing.

I urge you to ask your board and your membership to consider this basic question. Do you believe that Wisconsin citizens should publicly fund stem cell research and receive a public health care benefit from cell-based drugs and therapies?

If the answer is yes, then, would your organization support the following policy initiative: (This organization) supports legislation for federal and state funding of stem cell research, along with public health care safeguards, with benefit affordable to everyone.”

Furthermore, I ask your organization to consider joining a Wisconsin coalition to support state and federal funding for stem cell research along with policies to ensure all Wisconsin citizens have affordable access to cell-based medicines and therapies.

For more information on state funding of stem cell research in Wisconsin, see my published articles here on my blog and on the Wisconsin Stem Cell Now, Inc., website. My email address is: bergentown@sbcglobal.net.

Respectfully yours,
William R. Benedict

Science Without Ideology: The Future of Stem Cell Research

2009-04-07T18:05:00.001-05:00

UW-Madison Retirement Association’s Challenges Committee

Question for Dr. R. Alta Charo -
My name is William R. Benedict. I am a retired social worker. My family suffers daily with chronic cell-based diseases. As a family advocate, for the past five years I have been advocating for federal and state funding for embryonic stem cell research (ESCR). With serious chronic diseases, my family and our grand children will very likely stand to benefit enormously from miracle cell-based therapies.

My family and I want to thank you for all you have done to help Wisconsin’s stem cell program succeed so well to this point. My family and I are indebted to you for your tireless work and support for this research. Thanks so much for taking the time to be with us this afternoon and for speaking to us about the most critical issues now facing this research.

With respect to the question of how can emerging stem cell therapies be affordable to patients or in a new national health care system, I believe I speak today for tens of millions of families with serious chronic diseases, who are of modest means and who without serious stem cell research reform will be deprived of the fruits of this research.

My question concerns the nature of this “new attitude” that is referred to along with the coming of the new Obama Administration. To what extent will this new attitude look like what we had before the George W. Bush administration?
Will science and the pharma business continue to do “business as usual” as it relates to existing intellectual property laws that result in the already exorbitantly rich pharmaceutical corporations getting richer and richer at the expense of the taxpayers and health consumers?

As a preeminent bio-ethicist, and as regarding the common interests of all, who should determine whether a government funded invention should be patented? And who should decide what manner such patents should be licensed? And finally who should profit from patent licenses and in what amounts.

Presently as you know by existing statute it’s the scientist alone and the so-called non-profit research office transfer officials who are handmaidens to the drug industry, who benefit most. While this is an issue too large to address this afternoon
would you begin this discussion today by commenting on what stem cell research issues should be left to the scientists and what issues should be addressed through the democratic process?

State Funding of Stem Cell Research: A public health care benefit for all Wisconsin Citizen

2009-04-03T18:01:00.000-05:00

Public Testimony: Joint Finance Committee/Biennium Budget
Cambridge, WI

By now we know that solving Wisconsin’s ever-growing health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.

In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”

I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California. Subsequently through referendum their State constitution along with revised intellectual property rights, now provide such health care safeguards for their tax payers and health consumers.

Wisconsin’s legislature should stop dragging its feet, step up to the plate, and do the right-thing for Wisconsin taxpayers and its health consumers.

This means that the state legislature should follow the lead of our great President, Barack Obama, and pass funding legislation NOW along with a policy platform that protects both its gold standard stem cell investment and its health consumers from outrageous and exorbitant cell-based drug prices down the road. NOW, not later, is the time to act.

When we weigh the billions and billions of dollars to be both made and saved through miracle cell-based cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy challenge that lies before you and begs for your attention.

Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.

Public health care benefit safeguards can mean anything from requiring a successful grantee to return some fixed percentage of their profit back on their state funded billion-dollar stem cell-based drug discovery to the state’s designated patient health care fund to simply setting pricing thresholds on state health insurance costs for state funded cell-based medications.

The bottom line is that you and I as Wisconsin lawmakers and citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.

Now is the time for Wisconsin policy makers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.

Ultimately the answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives and the stimulus funds now being proposed.

Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.

Without prompt action now by our Wisconsin state legislature Wisconsin citizens should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers.

Public Testimony

2009-04-03T02:26:00.002-05:00

As a family with several cell-based diseases and a taxpayer concerned about Wisconsin economic future I am dumb-founded as to why this legislature continues to ignore this state’s multi-billion dollar gold standard resource. With each passing day, without state funding and a sound 21st century policy foundation in place, down the road, both Wisconsin taxpayers and health consumers will wonder just how in the world did their state lawmakers fail to act to protect and conserve this state’s greatest scientific and technological resource ever?

More specifically why does our state legislature sit idly by while a small non-public non-profit entity usurps its authority and decision-making power over this state’s most valuable twenty-first century economic property and resource?

How much longer will it take before Wisconsin lawmakers make the connection between its present health care and economic crisis and how its lucrative multi-billion dollar stem cell legacy is presently being shepherded? In all due respect to Dr. James Thomson who I greatly admire and respect, fundamentally this is a State of Wisconsin creation!

How many Wisconsin legislators have any idea about the nature of the decision-making and intellectual property language that was involved in Wisconsin’s decision to grant to our chief competitor, a large biotech company in the State of California, an exclusive embryonic stem cell license? Such agreed upon or passive impotence will not and should not go unnoticed by Wisconsin taxpayers.

California taxpayers and lawmakers have wisely determined that such lucrative intellectual property rights and profits should be shared with the California taxpayer and no longer controlled totally by the inventor alone and/or a small unelected elite in a research transfer office.

Finally I refer you to California’s Constitution on this subject, and more recently the Stem Cell Affordability Legislation (SB 343) now before California’s Senate Health Care Committee.

Most respectfully,

William R. Benedict

Decline in state’s mental health programs unconscionable

2009-04-02T02:28:00.001-05:00

The Capital Times

As the father of a son with serious mental illness, I was saddened to see how my state’s mental health program scored in a recent national study. It received a fair-to-poor grade, a score of C.

In 2006 our state had received a B and since no state had earned an A, this performance went largely unnoticed, in part because Wisconsin is the birthplace of a pre-eminent national mental health advocacy organization ---the National Alliance on Mental Illness. NAMI has led the nation both in mental health advocacy and in the creation of the most innovative and effective community-based service program model in the nation.

In 2006 NAMI National conducted and published its first Grading the States Report: “Grading the States 2006: A Report on America’s Health Care System for Serious Mental Illness. Recently NAMI released its Grade the States 2009 report. In it they used the 2006 findings for baseline comparisons. This report measures each state’s progress ---or lack of progress in many cases ---in providing evidence-based, cost-effective recovery- oriented services for children and adults living with serious mental illness.

In NAMI’s 2006 progress report the nation’s grade was D and Wisconsin scored a B. In this more recently released report the nation again scored a D while Wisconsin’s grade slipped downward from a B to C. Wisconsin was one of twelve states who fell back while 23 states stayed the same. Wisconsin has over 188,000 residents with serious mental illness.

Measures evaluated by NAMI had to do with the extent that the state mental health program had a workforce development plan, state mental health insurance parity laws and mental health coverage in programs for the uninsured. Other significant measures included the state’s ability to provide accurate data on a variety of services, including evidenced-based practices, service outcomes, and demographic data. Such measures undergird NAMI’s fundamental assertion that public funding for mental health treatment services must be tied to outcome performance measures.

Financing and core service measures also included Wisconsin’s 79 Community Support Programs (CSPs). These programs were found to fall far short of national fidelity standards. Funded in part by state Medicaid funds but heavily dependent on local county tax dollars, CBS produces a wide range of service quality and performance outcomes throughout the state.

The Division of Mental Health and Substance Abuse Services (DMHSAS) is the state mental health agency that works directly with county mental health agencies. While DMHSAS 2008 -09 program plans were found to be well intended, they failed to address these critical deficiencies.

Ironically, this conclusion was also supported in an August 2007 Wisconsin Council on Mental Health letter. Members of the council expressed concern “about the bluntness and ineffectiveness of the DMHSAS State Plan indicators as measures of state progress toward meeting important mental health goals and objectives.”

This state planning and review public watchdog agency also expressed its “concern about the quality and sources of data collected.” Its concern was particularly acute with respect to reports of services by counties who were delegated much of the responsibility for the plan’s implementation.

Let me quote the council: “Both the DMHSAS indicators and Department of Human and Family Services data are critical for the State and council to identify and support appropriate funding recommendations and decisions. Our recommendations are unfortunately undercut by inadequacies in both.“

So what has caused Wisconsin’s once innovative and dynamic mental health program to sink into mediocrity? This report suggests limited access and availability of services; insufficient funding; inequities of the state’s decentralized funding system and a still- broken information system that cripples the state’s ability to effectively plan, evaluate and account for its spending and service-delivery decisions.

If this isn’t a call to action what is? Won’t you join with NAMI and with our mentally ill sister and brothers and their families and as concerned taxpayers simply say, “We are not going to take this anymore!”

Much individual wealth truly belongs to society

2009-03-04T20:03:00.001-06:00

The Cap Times
Opinion & Commentary

Someday in the not-too-distant future, Wisconsin taxpayers will look back to February 2009 when Governor Jim Doyle proposed to raise the income tax rate on Wisconsin’s wealthiest households and Wisconsin corporations, and say, “This was truly a turning point when taxpayer fairness reform began in Wisconsin."

Once the economic realities are fully grasped by the public and they recognize that the top 1 percent of US households now receives more income than the bottom 120 million Americans combined - only then will we wonder just how stupid we could have been.

Wisconsin native and economist Gar Alperovitz in his latest book, “Unjust Deserts,” identifies four major American myths. First, that the wealthy few and elites are most responsible for wealth creation and jobs. Two, that in return these rare individuals and elites deserve most of the nation’s wealth. Third, that high taxation for the rich and elite will harm the economy for everyone. And fourth, that it is the poor, the old and the disabled who are the chief recipients of public “entitlements.”

Alperovitz informs us that since the beginning of the second half of the twentieth century it has become increasingly clear to economists that anything a person cannot produce alone is part of society’s cumulative knowledge and technological inheritance and belongs to all of us. Just one example, there would be no Bill Gates or Warren Buffett if the larger society hadn’t created and maintained through the years a constitutionally free and regulated market place. This too can certainly be seen as a public “entitlement.”

Alperovitz’s well documented economic analysis presents convincing historical evidence that throughout most of the 20th century when there was higher taxation of rich individuals and corporations and increased social spending America enjoyed its greatest wealth creation and productivity periods.

Should individuals who invent or manage wealth producing activities not be fairly rewarded? Absolutely! Should not greater attention, however, be given to proportionality and equality? In 1982 the average CEO of an American company received 42 times the compensation received by the average worker. Today that amount has more than tripled.

Madisonian William R. Benedict is a retired social worker now advocating for state funding of stem cell research. He blogs at danecountyalmanac.blogspot.com

Progressive Dane worth fighting for

2009-01-18T12:16:00.000-06:00

Wisconsin State Journal
Your Views
January 18, 2009
Progressive Dane worth fighting for

How deflating and tragic was Scott Milfred’s column in the Sunday State Journal about about the Progressive Dane Party. At the very least it was insensitive and out of spirit with the upcoming Martin Luther King Day celebration and President Barack Obama’s inauguration.

Almost all Americans are rejoicing over the promises of greater social and economic equality, freedom and a “new deal” for the working man and woman. Special interests and deregulators are on the run; the political power of individual citizens at the grass root level seems to have triumphed.

Now when a “community organizer” can be elected President of the United States, where there’s some real hope for democratic government with a small “d,” Milfred ironically asks the readers to use the occasion of Obama’s inauguration as evidence or an excuse for supporting the demise of the Progressive Dane Party in Dane County. Never!

Dane County needs more not fewer, representatives like Brenda Konkel. And yes, when our president violates our Constitution, we want our council members and all citizens to speak out.

See www.prodane.org for the King, Obama and Progressive Dane social justice agenda, or my blog at – dancecountyalmanac.blogspot.com

Bill Benedict, Madison

NASW - Wisconsin Chapter Adopts SC funding

2009-01-14T16:49:00.004-06:00

On Saturday, January 10th the Wisconsin Chapter of the National Association of Social Workers' Board of Directors adopted the following stem cell funding policy statement:

"NASW - Wisconsin Chapter supports legislation for federal and staate funding of stem cell research, along with public health care safeguards, with benefits affordable to everyone." This group committed to participate actively in the Wisconsin stem cell funding discussion and referred this new platform statement to its Legislative Committee for further review and action.

NASW WI. Member Requests Change in State Policy on Stem Cell Research Funding

2008-11-04T11:21:00.001-06:00

Wisconsin Update - NASW Wisconsin Chapter Newsletter
Autumn 2008

By now all of us are aware of Dr. Jamie Thomson’s human embryonic stem cell (hESC) discoveries at the University of Wisconsin. Wisconsin is now considered an international leader in bio-medical research throughout the world. Most health experts agree that Thomson’s discoveries will have a revolutionary impact on how medicine will be practiced in the twenty-first century.

No one should underestimate the potential impact that these discoveries will have on Wisconsin’s economy and on the health and welfare of Wisconsin citizens. Regrettably, to date, unlike in the State of California, there has been little discussion by John Q Public about how best Wisconsin should protect and use this lucrative multi-billion dollar resource.

For example, have you heard any discussion or speculation as to what impact our state’s good fortune could have in terms of our health care crisis and in making life saving and enhancing medications available to our elderly, low income and underserved population? Isn’t this a situation where meaningful revenue sharing between Wisconsin taxpayers and the bio-tech and pharmaceutical industry should be considered beyond the simplistic promises of greater job creation?

How should Wisconsin use this gold standard resource? Wisconsin now holds three broad human embryonic stem cell patents. It should be used to help assure that citizens with chronic and debilitating diseases have access to affordable cell-based drugs and therapies.

Undoubtedly this issue will be the number one social and health care issue of the twenty-first century. For more information on this issue and proposed policy see wiscellnow.org and citizensforcures.org.

Stem Cell Research “gold standard” resource in Wisconsin

2008-10-19T14:08:00.000-05:00

Fall 2008
Advocate – Coalition of Wisconsin Aging Groups (CWAG)

Some of you may be aware of Dr. Jamie Thomson’s human embryonic stem cell (hESC) discoveries at the University of Wisconsin.

Wisconsin is now considered an international leader in bio-medical research throughout the world. Most health experts agree that Thomson’s discoveries will have a revolutionary impact on how medicine will be practice in the 21st century.

No one should underestimate the potential impact that these discoveries will have on Wisconsin’s economy and on the health and welfare of Wisconsin citizens. Regrettably, to date, unlike in the State of California, there has been little discussion about how Wisconsin should protect and use this lucrative multi-billion dollar resource.

For example, have you heard any discussion or speculation as to what impact our state’s good fortune could have in terms of our health care crisis and in making life saving and enhancing medications available to our elderly, low income and underserved population?

Isn’t this a situation where meaningful revenue sharing between Wisconsin taxpayers and the bio-tech and pharmaceutical industry should be considered beyond the simplistic promises of greater job creation? How should Wisconsin use this gold standard resource?

Wisconsin now holds three broad human embryonic stem cell patents. It should be used to help assure that citizens with chronic and debilitating diseases have access to affordable cell-based drugs and therapies.

Undoubtedly this issue will be the number one social and health care issue of the twenty-first century.

Fortunately, the Coalition of Wisconsin Aging Groups, Wisconsin’s leader in advocating for prescription drug reform, now has the opportunity to help spearhead this discussion in Wisconsin. At its recent annual meeting, CWAG adopted the following 2008-2010 Platform Priority: “Support legislation for federal and state funding of stem cell research, along with public healthcare safeguards, with benefits affordable to everyone.”

For more information on this issue and proposed policy see wiscellnow.org and citizensforcures.org.

Respectfully, William R. Benedict, ACSW
CWAG District 1

Wisconsin’s Stem Cell Initiative Needs Strategic Plan

2008-10-19T02:24:00.000-05:00

On November first former UW-Chancellor, John Wiley, will assume his new duties as interim director of the public side of the Wisconsin Institutes of Discovery. Dr. Wiley has already said that he initially intends to attend to the “pre-operational” details associated with construction and staffing of this research facility set to be completed on the UW campus in 2010.

I hope Wiley will also begin the process of developing a comprehensive strategic plan to guide this stellar research ship through the storms of this next decade. What is critically needed at this juncture is a “Wisconsin Way” like strategic plan that is broadly conceived and community-based to include all the stakeholders in this journey.

All budgets, regardless of how important the mission, have fiscal and other resource constraints. For Wisconsin scientists to succeed they will need the support and input from every quarter including patient and consumer organizations, capital and material donor groups, and the aging and special needs communities to mention just a few.

Without measurable milestones to gauge our progress and identify our priorities Wisconsin’s premier stem cell research program will surely flounder. Taxpayers should encourage broad stakeholder discussions to identify alternative models of public funding, including revenue sharing, intellectual property, and licensing. All with the aim of ensuring that all Wisconsin citizens have access to affordable cell-based diagnostics and therapies.

Wisconsin campaign questionnaire results

2008-10-17T01:37:00.002-05:00

Three watchdog organizations – the Wisconsin Democracy Campaign, the League of Women Voters and Common Cause – have again come together this pre-election season to survey all our legislative candidates about where they stand with respect to Wisconsin clean government reform.

It seems to me that after this state’s caucus scandals and more recently the buying off of our State Supreme Court candidates via sham issue ads any respectable candidate running for public office in Wisconsin would want to put their best foot forward and if not actually support clean government, then at the very least, complete and return a non-partisan survey form.

But not in Wisconsin! Would you believe that nearly two-thirds of our state legislative candidates declined even to take a public stand on clean government reform issues. In fact to date only seven of the 25 senate candidates (28%) have even returned the questionnaire. Of the 243 candidates for state assembly, only 95 or 39% replied to the survey.

Do Wisconsin voters need any stronger evidence about what to expect when our new legislature reconvenes this January? As a former program evaluator, I am struck by the 33 percent return rate and how closely this figure compares with Wisconsin’s voter satisfaction index. Based on the above survey return rate is it any surprise that nearly 8 out of 10 Wisconsin citizens indicate that they are dissatisfied with their legislators and do not believe that they any longer represent their best interests.

Having worked with state legislators on campaign finance reform in recent years my best guess is that at least 75 percent of our legislators’ first allegiance is with the special interests that fund their election campaigns. I think this helps explain the low return rate and is a strong harbinger of what the citizens of Wisconsin can expect again during the next legislative session --- more deadlock and little if any clean government reform.

If you wish to find out how much your legislative candidate is invested in clean government reform in Wisconsin check the League of Women Voters’ web site.

Consider fairness in stem-cell push

2008-10-03T07:42:00.000-05:00

Wisconsin State Journal/Guest Column

Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.

Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.

It raises a host of moral, stewardship and health care issues along with critical questions of priority.

Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or for elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?

For more than 100 million afflicted Americans and their families, stem cell research is much more than a health, economic and political issue. It is their No. 1 concern. It’s a matter of whether they have enough hope and energy to suffer through another day and whether real help will ever come.

It is heartbreaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.

Resident and patient organizations will remain disengaged as long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life-and-death decisions in the hands of the scientists.

A consensus on social justice and fairness issues should be attained through vigorous public engagement at every stage of the stem cell research process--- from the business and research design to product development and distribution.

All research operates in the context of a particular human being, institution, state and budget. It would be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.

A host of other issues should be brought to the table as well, such as the severity of the illness to be targeted, present gaps in existing therapies, public health needs and the needs of our most vulnerable citizens?

In publicly supported educational and research centers like our own UW-Madison, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself.

Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.

When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise.

Public engagement and consideration of these potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies.

If Wisconsin’s stem cell research initiative is to succeed Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.

World Stem Cell Summit - Time is running out for many Americans

2008-10-01T03:09:00.002-05:00

Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.

Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.

It raises a host of moral, stewardship and health care issues along with critical questions of priority. Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?

It is often forgotten that the question of stem cell research is much more than a major health, economic and political issue. For over one hundred million afflicted Americans and their families it is their number one personal concern above all others and one that affects all their lives daily. For them it has to do with whether they have sufficient hope and energy to suffer through another day and whether real help will ever come.

Most of all, for these afflicted Americans it is the most urgent health and social concern of all. It is even more heart breaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.

As long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life and death decisions in the hands of the scientists, citizens and patient organizations remain disengaged. Rather than taking this advice, such social justice and fairness issues should be consensually derived through vigorous public engagement at every stage of the stem cell research process, from the business and research design to product development and distribution. This is so because all research operates in the context of a particular human being, institution, state and budget. It would clearly be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.

Rather than focusing only upon profit versus general welfare and quality of life considerations a host of other issues should be brought to the table as well, i.e., severity of the illness to be targeted; present gaps in existing therapies; does it meet a public health need, and the needs of our most vulnerable citizens?

Both for the sake of equity and for the welfare of our planet earth social justice and fairness also calls for wherever possible to share new research discoveries in an open and transparent manner and as broadly as possible.

Furthermore, in publicly supported educational and research centers like our own UW, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself. Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.

When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise. Hopefully, the grantee or entrepreneur will then be obligated to select areas of research that will yield the greatest increased welfare of its citizens.

Public engagement and consideration of the above potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies. If Wisconsin’s stem cell research initiative is to succeed, Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.

It would be fool hardy indeed to rely exclusively upon university faculty research oversight committees or intellectual property officials to make such complex life and death value decisions as well as decisions about the state’s future general welfare and economy. To counter such a possibility taxpayers and patient representatives should sit on university oversight and review committees; frequent, open and transparent stakeholder meetings should be encouraged; and alternative public benefit and intellectual property models welcomed.

This state will not likely confront any greater single issue in the twenty-first century involving its quality of life and economic future. Conservative market forecasts range from a fairly modest $100 million to as much as $10 billion by 2010. By 2030 stem sell research and development is projected to reach over 500 billion dollars. This figure does not include the potential trillions more saved by the elimination or amelioration of the most costly and debilitating diseases for more than one hundred million citizens.

Respectfully,

William R. Benedict

GAB acts to ban sham issue ads

2008-09-30T03:14:00.002-05:00

I was privileged to attend the recent Government Accountability Board (GAB) meeting and was so proud and pleased to see that all six of these non-partisan board members seemed to me determined to put an end to sham issue ads.

In a nut shell this process refers to the misuse of so called “issue ads” by the super-rich and powerful to anonymously attack and defeat a political candidate through a barrage of insanely costly negative TV ads especially in the last few days before Election Day.

The Wisconsin Democracy Campaign estimates that nearly eight million dollars was spend on such spurious ads during the last two Supreme Court elections. It is clear to this citizen that the Board has both the authority and the means to bring an end these corrupt practices. After all, this watchdog group has the statutory authority to fight corruption and/or the appearance of corruption, and to ensure the integrity of our election process.

How many of us really believe that our constitutional fathers ever intended for us to equate our so-called “free speech” rights with exorbitant corporate spending rights while the people’s right to peacefully assemble and speak out at political events erodes more and more each day. We can be sure that the Wisconsin Lobbyist Association and mistaken free speech advocates will continue to fight for the right to spend, spend, and spend and thus squander away and make more impotent each day the legitimate and true voice of the people.

Let all Americans who love our sacred liberties, follow the lead of these six courageous clean government watchdog officials and more recently John Wiley and the Epic Corporation, and stand up with them to the corporate lobbyists and the Wisconsin Manufacturers and Commerce. Call the Board’s office at 608-266-8005 and commend them for their industry and fine work since beginning in January 08 and assure them that they have your support.

Respectfully, William R. Benedict

A public health care benefit for all Wisconsin citizens

2008-09-09T17:56:00.002-05:00

Dialogue
Madison-area Urban Ministry
July-September 2008

By now we know that solving Wisconsin’s ever-growing home health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.

In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”

I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California.

When we weigh the billions and billions of dollars to be both made and saved through miracle cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy issue now before us.

Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.

Wisconsin citizens should follow California’s lead and pass legislation now that supports federal and state funding of stem cell research in Wisconsin along with public health care benefit safeguards.

“Public health care benefit safeguards” can mean anything from requiring a successful grantee to return 25 percent of their profit back on their billion-dollar stem cell-based drug discovery to the state of Wisconsin to be put in a special patient health care fund.

Or a successful grantee would simply be required to submit a plan to ensure affordable prices for all Wisconsin citizens, especially the medium-and-low income and underserved populations.

The bottom line is that you and I as Wisconsin citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.

Now is the time for Wisconsin policy makers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.

The answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives now being proposed.

Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.

Without grass roots action now by all Wisconsin citizens we should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers.

Demand payback on biotech strategy

2008-08-15T00:09:00.001-05:00

Wisconsin State Journal

Steven Clark’s recent guest column in the State Journal, “State needs biotech investment strategy” should make every taxpayer in Wisconsin --- and particularly families with chronic stem cell-based diseases --- sit up, take notice and act now. Clark found that Wisconsin’s biotech initiative has no clear overarching focus.

I was surprised to learn that Wisconsin has not placed its miraculous human embryonic stem cell (hESC) discoveries upper most in its strategic biotech initiative.

Wisconsin has already sold an inclusive license to one of the largest biotech companies in the world, which clearly cut taxpayers out of any special payback or affordable access to these products. Wisconsin families with stem cell-based diseases need to demand a full accounting of why this has happened now before any more of our intellectual property is compromised and squandered.

It also appears that the Madison biotech flagship needs to be expanded to include all the public and private biotech resources – both research and business - from throughout the state.

This is not the case. Wisconsin taxpayers and health care consumers ultimately will pay the price for our shortsightedness. As Clark notes, if research is not translated into businesses, it does nothing for the people or the economy.

Also, unlike in Wisconsin, the California taxpayers and stem-cell based consumers have been promised by state statute that they will receive a payback for any successful stem cell-derived commercial product.

That is, the state will receive a certain percentage of any revenue derived from the state-funded research, and low income and the uninsured residents will have equal access to the miracle health products that follow.

In Wisconsin, the home of embryonic stem cell research, there is little evidence thus far that any overall plan or policy exists to ensure that Wisconsin taxpayers will receive a similar payback and public access to affordable stem cell therapies when they appear in your local drugstore.

The bottom line: the Wisconsin biotech flagship is adrift without a rudder. Wisconsin lacks a clear mission and policy platform that would help guide it through what is projected as a $500 billion dollar industry in 2020 or sooner.

In a practical sense, this means that when your governor or the Wisconsin Department of Commerce awards a biotech company or scientist or entrepreneur a grant, you will not find any mission-driven clause or revenue- earned payback requirement in that contract.

I urge all taxpayers, especially those who are working for health care reform and families with stem cell-based diseases, to call your legislators and ask them what they are doing to make sure that Wisconsin’s investment in human embryonic stem cell research is protected from any further unraveling of this enormously lucrative “home-grown” resource.

Benedict lives in Madison.

State must protect investment in stem cell research

2008-07-21T16:35:00.003-05:00

The Capital Times/Opinion, Madison, WI

As a Wisconsin taxpayer I am grateful and proud of Dr. James Thomson and UW-Madison’s bioscience community for their human embryonic stem cell (hESC) discovers. But as I study the funding issues relating to Wisconsin’s stem cell enterprise I have become increasingly concerned with how our state is managing the intellectual property associated with these potential lucrative discoveries.

One of my questions has to do with why Wisconsin agreed to give exclusive rights to the Geron Corp. in Menlo Park, Calif., for using Wisconsin-patented stem cells to treat heart, diabetes and neurological disorders? My concerns have to do with both the nature of the diseases chosen and the potential economic and health care implications involved.

I am also concerned with the potential conflict of interest involved and exactly by who and why this decision was made and whose interests are best being served?

After all, the potential financial returns to the state of Wisconsin in terms of future health care costs are enormous, not to mention who it is who will ultimately control and most benefit from any cell-based cures in these three major disease areas.

As users of heart drugs and other therapies, I and many other Wisconsin citizens are very dependent upon medications. As both a taxpayer and patient I am concerned about how Wisconsin-funded cell-based discoveries are being managed. Are they being managed in a way that can best ensure Wisconsin families more effective and affordable heart disease, diabetes and neurological care?

Or, will my grandchildren also have to travel to Minnesota for their heart medications? Will nearly half of Wisconsin citizens still have to go without full access to medications and more affordable health care in 2020?

I urge all Wisconsin citizens, but especially those who are working for health care reform here, to begin to connect the dots between our basic biomedical research and development decisions and our existing health care crisis before it is too late.

The central question is: how can we move from our state funding policy of providing a blank check to biotech and pharmaceutical companies and scientists/entrepreneurs to routinely attaching health care payback safeguard to all our innovation grants and other tax incentives?

Perhaps the place to begin is with better and more accurate information about who really is paying for this research. We can begin by eliminating two major myths: that university funding for science discoveries is generally paid for by the private sector, and that public revenue sharing would discourage scientific research.

Wisconsin citizens need to consider who owns the university, who really pays for the laboratories, equipment, supplies, the buildings, utilities and the salaries of scientists and staff who work there? Who supports and sustains the gigantic and robust interdisciplinary and collaborative resources deposited there? It is the taxpayers, the students and alumni (you and me) who support and sustain this marvelous and successful research enterprise.

Ultimately Wisconsin taxpayers’ ability to deal with the above concerns successfully will depend in large part on how we as a statewide community make these value-based decisions in the full light of public scrutiny. Presently these decisions are being made in board rooms and by CEOs sitting on university-based patent-making non-profit foundations. What are called for at this juncture are less government and media assurances and much more public discussion based on much better information and transparency.

Legislature: commit on stem cell research

2008-06-26T17:54:00.001-05:00

Wisconsin State Journal/ Your Views
June 26, 2008

A recent study suggests that stem cell programs that exist in a stable and favorable policy and funding environment are continuing to thrive. Conversely stem cell programs that are hampered by inadequate and sporadic funding are clearly underperforming.

So far Wisconsin has been blessed with a huge investment only in human capital. This has been contributed tirelessly and generously by Thompson and his UW colleagues. We cannot afford however to rest on our laurels and human capital alone.

What is needed is a bi-partisan initiative that goes beyond good will and provides for a secure and continuous public and private funding base. This support and funding must be accompanied by a message from the people of Wisconsin ---our state Legislature—that tells venture capitalists and committed scientists alike that Wisconsin means to be in the stem cell business for the long time.

Wisconsin legislators can no longer continue to sit by while Wisconsin citizens and families continue to suffer daily from debilitating diseases and an ever weakening economy.

Check legislators’ record before voting

2008-05-23T12:46:00.001-05:00

Capital Times - Readers View

Thanks to the Wisconsin Democracy Campaign all you need to do now is click on www.wisdc.org/pr042908.php and see objectively how your state senator and Assembly representatives voted on six major clean government bills during this past year.

I worked as a program evaluator for over thirty years. How refreshing it was to see that our state legislators are finally going to have to stand on their voting record instead of how much money they have to spend on their campaign.

The representatives, based on their votes, were divided into one of four categories based not on their promises, good looks or how big their smile is but strictly on their voting record for clean government.

Before voting this fall, you only need to know one thing about your legislator. What clean government category did he or she earn? The four include democracy defender, public ally, bystander and public enemy?

Wisconsin voters will know their votes really did count this time to help clean up the sordid mess in their state capital. You can take control of your government if you act now.

Tier 4 Insurance Plans Are a Pretext for What Will Follow

2008-04-28T19:20:00.002-05:00

According to a recent New York Times article by Gina Kolata health insurance companies are cleverly adopting a new pricing plan for very expensive drugs, asking patients to pay hundreds and even thousands of dollars for prescriptions for medications that may save lives or slow the process of serious diseases.

Now rather than paying a fixed co-pay charge for your prescription medications, patients will now be charged a percentage of the actual cost of certain high priced drugs up to as much as 33 percent. This new drug pricing scheme is called Tier 4 plans and is being touted by industry economists as a cost saving mechanism for health care consumers.

While the US government’s Medicare plan first conceived the 4-tier plan idea as a way of distinguishing between certain considered non-essential life-style or enhancement medications such impotence reducing products, the private sector, however, is now using such 4-tier pricing schemes to separate out the most seriously ill people whose illness or pain requires the most expensive bills.

Rather than spreading the insurance plan’s total cost out over the entire population served, this new pricing plan separates the most seriously ill consumers, often with the most pain, from the healthier who require less expensive medicines. If this is not health care inequity what is?

Some of the more common diseases that have now been moved into this category include multiple sclerosis and rheumatoid arthritis. Under these plans even the insured and more affluent people may not be able to afford the treatments they require.

What disturbs this writer is the industry’s audacity to inflict this costly and inhumane pricing system on you and me in spite of the fact that both pharmaceutical and insurance companies are already charging exorbitant prices and making such huge profits. This is occurring when over one-third of Wisconsin citizens have no health care insurance and many remain ill or are dying yearly because they cannot afford the high costs of medications.

Why would the industry want to provoke health care consumers more than they already are? The reason is because they want to be in a position when the stem cell medicine revolution era arrives to be able to serve both the average insured person and the very rich and powerful with even far more costly miracle cures and enhancements. The Tier 4 option will pave the way to allow such health inequities to co-exist while still allowing the existing very profitable system to continue.

If consumers allow such an inequitable drug pricing system to continue the far more costly future cell based miracle drugs both for diseases and increased longevity enhancement will be accessible and affordable only for the rich and powerful.

Many readers who read this article will wonder how it is possible for the government’s Federal Drug Administration and the federal insurance commission would allow licensed drug manufacturers and insurance companies the right to perpetuate such a pricing plan on the American public? There are two main reasons. One, of course is that it is the very pharmaceutical and insurances company officials that sit on the policy-making and governing sub-committees that write these rules. The second reason is that these two industries pay by far more for your representative’s re-election than either you or I.

Readers should contact their congressional representatives now and ask them to call an emergency session to stop such unjust drug and insurance pricing practices NOW.

Respectfully, William R. Benedict, Madison

Enough is Enough

2008-04-28T19:14:00.001-05:00

Did you know that recent US government budget figures indicate that this administration has spent enough money in the prosecution of the Iraq war to give every Iraq citizen $150,000 and every Iraq family $500,000? This figure is based on Iraq’s population estimated presently at twenty-five million.

Based upon the three trillion dollar cost of the war to date, it has cost each US citizen $10,000 dollars. Of course the reality is that this war has cost you and me to date not one single penny. This total five year three trillion dollar debt has been borrowed and will be a burden on our children and grandchildren for many years to come.

At the present cost of 25 billion a month, two more years of staying in Iraq is another 600 billion of debt our grandchildren will owe our foreign sovereign creditors in China and the Middle East.

The entire three trillion dollars was given away through so-called “emergency supplementals,” meaning that your money was spent completely outside the normal budgeting process and without the normal budget caps. It is the equivalent of writing Uncle Sam a blank check.

These were quick and easy give-away dollars that our grandchildren will be paying interest on far out into the unforeseeable future. In other words three trillion dollars was given out in an un-scrutinized, undifferentiated and totally unaccountable fashion.

Contrast this administration’s shoddy spending and record keeping practices on the Iraq war with how it is presently dealing with the present home mortgage crisis. It has taken this administration since last August to help fewer than 2,500 of more than 2 million Americans staring at foreclosure this year.

While our defense department can pay over 150,000 private security contractors over $400,000 per person, plus expensive life insurance policies, compared to only $40,000 per US soldier per year, this administration has scrutinized and micro-managed to death assistance to struggling American homeowners.

For these prospective recipients saddled with foreclosed houses, the “appropriateness” of government loans or insurance is calculated down to the smallest detail including itemized tax returns and assorted eligibility requirements. When asked to help Americans in need here on the home front the issue of how much taxpayer money should be put at risk suddenly becomes this administration’s chief concern.

Since World War II it appears no longer necessary for the people’s national legislature – our Congress - to pass a formal declaration of war. Now it is also becoming increasingly popular for our congressional leaders to shirk their constitutional responsibilities by simply approving humongous blank checks to the President to fight his own personal wars.

Contact your Congress persons and tell them that you aren’t going to take it any more. Tell them that you no longer consider them responsible stewards of the peace nor sufficiently competent to manage the people’s finances. Tell them that you will be looking for a new representative to do the people’s business in Washington. Get out and vote in the upcoming election and write in the name of the person who you think will represent you and your country’s best interests.

After you have written your letter or made your call, visit your nearest library or bookstore and pick up “The Three Trillion Dollar War” by laureate Joseph Stiglitz and Harvard economist Linda Bilmes on the true cost of the US Invasion and Occupation of Iraq.

Respectfully,
William R. Benedict, Madison

We Won’t Take It Anymore

2008-04-28T19:06:00.001-05:00

I was saddened this week to read about the Federal Energy Regulatory Commission’s (FERC) release of REX’s latest Environmental Impact Statement and the commission’s staff ruling that the company’s plan be approved. In spite of this I am still hopeful that Indiana’s Governor or its two U.S. Senators and the district’s congressional representative will still stand up and tell the 5-member commission that the 37,000 southeastern Indiana residents are tired and just won’t take it anymore.

Meanwhile, I am so proud of the members of the Franklin County Area Plan Commission who recently voted unanimously to turn down the “special exception application” from REX. I am also proud of the county’s citizens who for months have written letters to this newspaper explaining why they were opposed to this project and arguing for its defeat.

Finally, I am proud of this newspaper’s editor, John Estridge, who in his most recent editorial so deservedly castigated Indiana’s congressional delegation and its Governor for seemingly caving in to the rich and powerful and in so doing putting 37,000 of our sisters and brothers and future generations of Franklin County residents at serious risk of their property and their lives.

As a former Franklin County resident with still deep roots in this community I strongly suggest that each person who reads this letter write or call their representatives and tell them that if and when the FERC approves this dastardly project they will no longer have your vote in the fall elections. Only by taking such action now can Franklin County residents stop the next great incursion on their rights, liberties and lives.

Most respectfully,

William R. Benedict

Let’s follow California’s lead on health care costs

2008-04-02T13:23:00.000-05:00

Guest Column - The Capital Times
April 2, 2008

By now we know that solving Wisconsin’s ever-growing home health care costs is a multifaceted problem and will not be solved by any single solution. And while there are many comprehensive solutions being proposed, none of them go directly to the core issue---monolithic and predatory health care pharmaceutical pricing practices.

In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”

I continued to read and soon learned what they meant by the words, “public benefit.” They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California.

When we weigh the billions and billions of dollars to be both made and saved through miracle cures of our worse most debilitating diseases and by such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope and importance of the health care policy issue now before us.

Californians have learned their lessons well from our nation’s health care problems and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.

Wisconsin citizens should follow California’s lead and pass legislation now that supports federal and state funding of stem cell research in Wisconsin along with public health care benefit safeguards.

“Public health care benefit safeguards” can mean anything from requiring a successful grantee to return 25 percent of their profit back on their billion-dollar stem cell-based drug discovery to the state of Wisconsin to be put in a special patient health care fund.

Or a successful grantee would simply be required to submit a plan to ensure affordable prices for all Wisconsin citizens, especially the medium-and-low income and underserved populations.

The bottom line is that you and I as Wisconsin citizens can prove to ourselves and our grandchildren, and future generations, that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public-funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.

A Public Health Care Benefit for All Wisconsin Citizens

2008-03-24T12:49:00.001-05:00

This presentation was given by William R. Benedict at the Wisconsin Coalition for Aging Groups District 1 Spring Senior Issues Forum

I too want to thank you for being here and for giving me this opportunity this morning to speak to you about the most important and neglected health care policy issue now facing our nation and the State of Wisconsin.

In 2005 my partner and I were vacationing in San Diego California. While reading the San Diego Tribune I just happened to read about California’s 3 billion dollar stem cell research program and about the many health care stakeholder groups who all were fighting for something they were calling a “public benefit.”

I continued to read and soon learned what they meant by the words, public benefit. They wanted to make sure that medical breakthroughs and medicines developed through stem cell research, and funded by their tax dollars, would be available and affordable to every citizen in California.

I learned that the baby boomers and our children’s lives will be literally transformed in terms of the eradication of our most debilitating diseases – Parkinson, diabetes, Alzheimer, cerebral palsy and heart disease, to mention just a few.

When we weigh the billions and billions of dollars to be both made and saved with such life enhancements as restored memory, increased mobility, regenerated body parts, and most of all, increased longevity, only then can we begin to appreciate the real scope of the health policy issue now before us.

Californians have learned their lessons well from our nation’s health care issue and have decided to go directly to the root of our health care pricing crisis. They are no longer going to pay twice for their health care: Once for the research and once again for the exorbitantly priced medications and therapies.

I propose that each of you and this Coalition adopt the following simple policy statement that will set in motion a major policy shift in how health care pricing practices are viewed in Wisconsin from this day forward. .

“The Coalition of Wisconsin Aging Groups supports legislation for federal and state funding of stem cell research along with public health care benefit safeguards.”

“Public health care benefit safeguards” can mean anything from requiring a grantee to return twenty-five percent of their profit back to the state of Wisconsin to be put in a special patient health care fund. Or a potential grantee could simply submit a plan to ensure affordable prices for all Wisconsin citizens, especially the medium and low income and underserved populations.

The bottom line is that you and I can prove to ourselves and our grandchildren that we have learned our lesson from exorbitant health care pricing. We have learned not to give our money to people without first asking who they are, why they need it, and how they plan on using it. This new policy of asking the public funded grantee to meet certain expectations and provide some return on our investment is better than writing a blank check and continuing with health care in Wisconsin as we now know it.

A Stem Cell Funding Health Care Benefit Safeguard Is Proposed

2008-03-24T00:51:00.001-05:00

Recently Federal Trade Commissioner, Jon Leibowitz wrote, “Getting health care costs under control is a daunting and multifaceted challenge.” As a family member with several stem cell diseases Leibowitz emphasized that there is no one solution to fixing our health care crisis.

He then went on to report how pharmaceutical companies collude with their competitors to keep lower generic alternatives to prescription drugs off the market and how the commission plans to ban such “pay-for-delay” settlements.

Leibowitz is challenging all citizens and health care consumers who are waiting for a single payer universal health care plan to arrive must meanwhile continue to take steps to bring about more accessible and affordable health care to all our citizens. In this spirit I want to propose another simple approach that would save health care consumers billions of dollars annually.

To date we have been promised only indirect trickle-down economic effects, including more jobs and a higher tax base from our support. While this is a worthy and much needed economic benefit, it alone is far too narrow and short sighted. If Wisconsin is to effectively manage its ever escalating and exorbitant health care costs we must act now.

A genuine public health care benefit for public funding of stem cell research can range from a percentage of biotech profits beyond a certain threshold to simply ensuring that drug costs and other stem therapies in Wisconsin will be managed and made at reasonable costs to all our citizens. Other public interests policy concerns have to do with whether medication discounts are to be given to low and medium income patients and other underserved groups?

Will Wisconsin taxpayers have any say to help ensure that such stem cell funding targets prioritized disease groups such as Alzheimer’s, diabetes and sickle cell anemia versus pursuing products that have only short-term commercial and cosmetic benefits?

Millions of our state tax dollars have already been spent and more have been added to this year’s biennium budget without any such consumer safeguards. State innovation grants, tax credits and a host of other public financial incentives are being invested and now are in the state administrative pipeline.

Asking grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house. If these stem cell policy concerns are not already on your civic or health care organization’s radar screen and advocacy agenda such neglect could be catastrophic for Wisconsin health care consumers.

The fundamental policy questions that you and your organization should be asking is should your organization support legislation for federal and state funding of stem cell research with public health care payback safeguards?

Respectfully yours,

William R. Benedict,
Madison.

Wisconsin State Funded Stem Cell Research

2008-02-15T15:20:00.001-06:00

An Open Letter to Health Care Advocate Organizations

As a senior citizen of the State of Wisconsin whose family is suffering from three serious cell-based diseases and who has been working for both private and public funding for stem cell research, I am writing to your organization for support.

As a key stakeholder organization I believe that your group can play a critical advocacy role at this early stage in Wisconsin’s stem cell research initiative. As a large non-profit organization who advocates and serves people with serious current and/or future health needs you know that every effort must be made to ensure that these and all Wisconsin citizens have equal and fair access to affordable medications and other health therapies.

Many organizations like your own have been fighting long and hard for your members so that they will have more reasonably priced drugs and other treatments. Many of you already support federal health insurance programs and favor more universal health care for all of our citizens. Unfortunately there is still no assurance that this goal will be realized.

While we must continue to deal as quickly and directly as possible with the immediate health care crises, meanwhile we must also look beyond the present health care crisis and take action to make stem cell discoveries more affordable to all Wisconsin citizens. To do so citizen membership groups like yours need to support a more lasting and equitable solution to our nation’s health care problems.

Stem cell research is still in a nascent state and suffering from moral controversy and consequent funding gaps. It’s fair to say that in many respects Wisconsin has been treading water while California, Connecticut and other states continue to advance.

While Wisconsin hopes and waits for wider community support our state legislature offers no direct funding or policy platform that would ensure that you and I and all taxpayers will receive any tangible public health care benefit whatsoever from any Wisconsin stem cell research discoveries.

To date we have been promised only indirect trickle-down economic effects, including more jobs and a higher tax base from our support. While this is a worthy and much needed economic benefit, it alone is far too narrow and short sighted. If Wisconsin is to effectively manage its ever escalating and exorbitant health care costs we must act NOW. If we have the will, we will end the disenfranchisement of our most vulnerable and needy citizens of their basic human right to good affordable health care.

A genuine public benefit in Wisconsin for the funding of stem cell research can range from legislating patent royalty rights and a percent of biotech profits beyond a certain threshold, to simply ensuring that drug costs in Wisconsin will be managed and made reasonable and affordable to all citizens.

I urge your organization to carefully consider the following stem cell policy issues:

Will Wisconsin stem cell discoveries be made available to the public at reasonable prices and in sufficient quantities to all Wisconsin citizens? Will discounts be given to low and medium income patients and other underserved groups?

Are policies needed to ensure that special preferences be given to biotech companies that target their cell based inventions to families with cell based diseases and the underserved groups in Wisconsin regardless of income?

Are policies needed to ensure that state supported stem cell companies will pursue research and development into prioritized disease groups such as Alzheimer’s, diabetes and sickle cell anemia versus pursuing stem cell products that have more immediate commercial potential for large markets? Or will Wisconsin citizens spend tax dollars to pay for cosmetic and other personal enhancing products for the rich and powerful while seniors struggle to pay for their most basic health care needs?

Are policies needed to ensure that companies who use state funding direct their research into the widest ranges of illnesses, not just for the most well-heeled disease advocates?

Other policy alternatives and variants are possible to serve the unique public health care needs of Wisconsin citizens but we must begin NOW.

Millions of our tax dollars have already been spent and more have been added to this year’s biennium budget.

State innovation grants, tax credits and hosts of other public financial incentives are being invested and are now in the state’s administrative pipeline. This money is being spent without any policy guidelines or payback conditions whatever. Someone has said, “Asking grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.”

If these stem cell policy issues are not currently on your organization’s radar screen, and do not now appear on your two year planning priorities list, this neglect could be catastrophic for your members and for Wisconsin patients down the road.

I am asking your board of directors to read this letter and weigh its importance to your membership and other health care stakeholders. The biggest mistake you or your organization could make is to simply do nothing. At the very least put this discussion on your executive committee’s agenda NOW. I urge you to ask your board and your membership to consider this basic question. Do you believe that Wisconsin citizens should receive a direct public health care benefit from any state supported stem cell research in Wisconsin?

For more information on state funding of stem cell research in Wisconsin, see my published articles on my blog: danecountyalmanac.blogspot.com and on the Wisconsin Stem Cell Now, Inc. website

Comprehensive Campaign Finance Reform Legislation

2008-02-12T14:22:00.000-06:00

Public Hearing
Testimony

My name is William R. Benedict. As a proud citizen of Wisconsin, it is a privilege to have this opportunity to testify before the Senate Committee on Campaign Finance Reform and Rural Issues and Information Technology.

I am a retired social worker who is now working full time as a citizen advocate for campaign finance reform and state funding of stem cell research. My special constituency is myself, my family and the citizens of the State of Wisconsin.

I am here this morning because I sincerely believe that our body politic is sick at the core and it is urgently in need of comprehensive campaign finance reform. Our legislature has a systemic and insidious disease so strong that it infects our most dedicated public servants. Wisconsin voters know deep down in their soul that their vote no longer counts. They believe that you have sold them out to those who pay for your elections term after term and now have put in jeopardy their sacred political freedom.

It hurts me this morning to have to say that I believe you have prostituted your office in order to have your election campaigns paid for by the rich and the powerful.

Not until every Wisconsin citizen can run for public office regardless of how much money they have will we have a state government by the people and for the people. I urge you and all of your Senate and Assembly colleagues to take the strong medicine needed to cure this terrible sickness. Please pass Senate bills 12, 25, 171 and 463.

Make Wisconsin pure and clean again!

Thanks again for this opportunity to speak.

Governor’s speech misses mark on stem-cell innovation

2008-02-11T15:46:00.000-06:00

Wisconsin State Journal
Op-Ed – Guest Column

As a senior citizen of the state of Wisconsin whose family suffers from three serious cell-based diseases and who has been working with both private and public officials in support of public funding for stem cell research in Wisconsin, I was deeply disappointed when my governor in his State of the State address looked our legislators and the citizens of Wisconsin in the eye and boasted that Wisconsin has stayed at the forefront of stem-cell innovation “because we kept politicians out of it.”

I have to assume that the “we” was referring to you and I the citizens of Wisconsin. Or did the “we” refer to his Administration? In either case, I predict that there will be a time in the not too distant future when the taxpayers and the health consumers of this state will deeply regret that the people and their representatives acquiesced and remained disengaged while the most critical health policy issues were left unaddressed.

How can the citizens of this state and our policy makers remain disengaged around a human health concern having to do with the essence of life itself?

If not us – the citizens through our legislature - then who will decide? While I support our free market place and the critical role that private enterprise including venture capitalists and foundations will and must play if Wisconsin’s stem cell programs is to succeed, as a citizen I am not about to support anyone who advocates that citizens and their policy makers withdraw from the public square on this or any other vital public issue.

As much as I admire Dr. James Thomson and his team of talented and dedicated scientists, neither they nor UW research community nor the biotech/pharmaceutical industry can be left to mind the people’s business relating to how best to fund stem cell research and to ensure that the taxpayers and future health consumers of this state’s needs and interests are fairly represented.

The media are trying to distract us from this issue by framing it primarily an economic answer to all our problems. They would prefer that the citizen see the chief public benefit for their investment in terms of the trickle down effect and the promise of future job creation.

While this benefit is worthy, it is far too narrow and short-sighted.

Further allocation of public tax incentives and innovation grants must be accompanied with accountability and public benefit requirements, including intellectual property rights (ownership rules), public disclosure and conflict of interest safeguards.

To continue to focus primarily around job creation outcomes and ignore the State’s present health care crisis is short sighted and irresponsible.

Now is the time for our policymakers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases.

The answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives now being proposed?

Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.

If Wisconsin truly is to remain at the forefront in its stem cell initiative, like California and many other states, we will set about immediately to fill the policy gaps referred to above.

Without legislative leadership we should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers?

I hope a year from now when our governor again gives his State of the State address he will be able to thank your legislators and mine for building a policy platform that will match the genius of our science and insure that Wisconsin’s stem cell program remains at the forefront of both stem cell and health care policy innovation.

Weigh Hillary’s sex like Obama’s race

2008-02-01T15:41:00.000-06:00

Your Views
Wisconsin State Journal - Opinion Page

Thursday guest columnist Dan Wohl acknowledged Sen. Barack Obama’s race is “a huge part of the equation “for his decision to support him.” But I wondered whether he and his demographic feel similarly about the political significance of Hillary Clinton’s gender. Couldn’t this also be a legitimate reason for young people to support her?

After all, hasn’t sexism had a much larger destructive political influence in human history than racism? This has probably been the case in American history as well. Certainly all Americans can be proud to see two such wonderful Americans running for President of the United States. And like Wohl, I think both candidates are similar in policy and other respects.

I lean toward Clinton, however, because she has much more international experience. And because she is a woman she is more likely to have a broader, inclusive, compassionate and generous world view. It is way past time that we give the other sex an opportunity to lead our nation, and world peace should transcend all the other issues we now face.

When I weigh Mrs. Clinton’s life experiences and her character and integrity as a person, I have to believe that she has been called to lead our nation. Her daring posturing toward the right of center, for better or worse, is calculated only to secure her election in an otherwise polarizing political environment.

Unlike Wohl, who wrote that if Obama loses Wohl will feel devastated, as a 72-year–old life-long Democrat, I will be happy if either Democratic candidate wins in November.

The Stem Cell Initiative - The Public’s Business

2008-02-01T11:51:00.001-06:00

As a senior citizen of the state of Wisconsin whose family suffers from three serious cell-based diseases and who has been working with both private and public officials in support of public funding for stem cell research in Wisconsin, I was deeply disappointed when my Governor in his State of the State address looked our legislators and the citizens of Wisconsin in the eye and boasted that Wisconsin has stayed at the forefront of stem-cell innovation “because we kept politicians out of it.”

I have to assume that the “we” was referring to you and I the citizens of Wisconsin. Or did the “we” refer to his Administration? In either case, I predict that there will be a time in the not too distant future when the taxpayers and the health consumers of this state will deeply regret that the people and their representatives acquiesced and remained disengaged while the most critical health policy issues were left unaddressed.

How can the citizens of this state and our policy makers remain disengaged around a human health concern having to do with the essence of life itself? If not us – the citizens through our legislature - then who will decide? While I support our free market place and the critical role that private enterprise including venture capitalists and foundations will and must play if Wisconsin’s stem cell programs is to succeed, as a citizen I am not about to support anyone who advocates that citizens and their policy makers withdraw from the public square on this or any other vital public issue.

As much as I admire Dr. James Thomson and his team of talented and dedicated scientists, they nor UW-Madison university research community or the biotech/pharmaceutical industry CEOs, can be left to mind the people’s business relating to how best to fund stem cell research and to ensure that the taxpayers and future health consumers of this state’s needs and interests are fairly represented.

Corporate media is trying to distract us from this issue by framing it primarily an economic answer to all our problems. They would prefer that the citizen see the chief public benefit for their investment in terms of the trickle down effect and the promise of future job creation. While this sexy public benefit policy being dangled before us is very compelling and worthy indeed, it is one that is far too narrow and short-sighted.

Further allocation of public tax incentives and innovation grants must be accompanied with accountability and public benefit requirements, including intellectual property rights (ownership rules), public disclosure and conflict of interest safeguards. To continue to focus primarily around job creation outcomes and ignore the State’s present health care crisis is short sighted and irresponsible.

Now is the time for our policymakers to decide whether the miracle cures promised will be made accessible and affordable to Wisconsin families with cell-based diseases. The answer to this question must be reflected in the language of the state’s financial and tax research innovation incentives now being proposed? “Asking the grantees to do the right thing after giving away the farm is like asking the fox to cough up the chickens after giving him the key to the hen house.”

If Wisconsin truly is to remain at the forefront in its stem cell initiative, like California and many other states, we will set about immediately to fill the policy gaps referred to above. Without legislative leadership we should not expect that cell-based therapies and drugs derived from this research will eventually benefit all of us as health consumers and taxpayers?

Hopefully one year from now when our governor again gives his State of the State address he will be able to thank your legislators and mine for building a policy platform that will match the genius of our science and insure that Wisconsin’s stem cell program remains at the forefront of both stem cell and health care policy innovation.

Submitted to the Wisconsin State Journal 2/1/08

New Media and the Election

2008-01-06T20:26:00.001-06:00

Wisconsin State Journal - Forum

‘New media’ enhance citizens’ involvement

The “new media” will greatly enhance the process of electing our next president because bloggers, MySpace and YouTube and single issue group e-mail listings have become important vehicles for generating political awareness and involvement.

This was seen in 2006 when non-partisan citizen groups organized to soundly defeat the attempt by corporate America to extend media consolidation. This successful citizen protest was carried out on a shoestring compared to the combined corporate resources arrayed against it.

These new media mechanisms have already begun to transform our democracy. While the traditional print media simply copy corporate-produced political news into the local newspaper like a template, this new media allows thousands of bloggers and citizen journalists to investigate and report.

Bloggers have both the freedom and tenacity to stay long enough with a single issue until its truth or falsity is clearly made known or public action is taken. Unlike the traditional press, which regularly editorializes on only one political perspective day after day and allows only a paltry number of differing citizen opinions, the new interactive journalism is a beehive of conflicting political news accounts.

Dr. Dhavan Shah, UW-Madison professor of journalism and political science who was quoted in Sunday’s Forum column could not be more wrong when he alleges the new media “doesn’t have the normal filters of political journalism.” Quite the opposite is true. The new media has thousands of filters for each and every political story while mainstream journalism increasingly presents only one view. This was best seen with the unanimous pro war perspective that traditional journalism provided the American people leading up to the Iraq War.

Those who are still have doubts only need to consider Ron Paul’s amazing presidential candidacy. Thousands of ordinary citizens have financially invested in Paul’s campaign. Thanks to the new media and the internet, the not-so-rich and the powerless can take heart about their new political fortunes.

Solution to Capital problems is campaign finance reform

2007-12-10T19:49:00.000-06:00

Letter to the Editor, Capital Times Forum page/Voice of the People

I must say that I was dismayed after reading the political discussion in The Wisconsin Way’s position paper, “Wisconsin at the Crossroads.” I found this discussion lacking in candor if not disingenuous. I believe that many citizens will read this segment and feel disheartened by such a simplistic analysis of the central political problem facing Wisconsin. Are we really expected to believe that the single greatest problem at our state Capital should be understood and has to do simply with partisan gridlock and ideological inflexibility?

It’s not that “our elected officials are trapped in a political process that thrives on issue polarization.” Rather it’s you and I, the voters and taxpayers of this state, who are trapped by allowing the rich and powerful to own our lawmakers. Our legislators are doing just fine, thank you, by repeatedly staying in office owing to big fat contributions year after year.

Any fair and honest discussion of the present context and process of policy making at our Capital it seems to me must, at its center, be focused on the corrupt pay-to-play culture that exists there. What good would be accomplished if the people of Wisconsin, through a state-wide conversation and consensus, for example, should come to the conclusion that indeed corporations in Wisconsin should be taxed more and also by the community in which they are located?

This enraged citizen taxpayer believes that any solution that ignores the need for comprehensive campaign finance reform in Wisconsin will be a paper tiger and go the same way as most other such initiatives have gone. It will be little more than shifting the sand piles around because reform, without the people owning and controlling their government, is futile.

Respectfully,

William R. Benedict

Stem Cell Debate is Needed

2007-12-06T19:45:00.000-06:00

Have Wisconsin taxpayers been deprived of having a vigorous and diverse discussion regarding the future of Wisconsin’s embryonic stem cell research in our State? I think so! I believe one reason for this is the polarized, highly partisan, and special interest-owned state legislature. It is due to legislators’ eagerness to play it safe and stay in office versus fairly representing the diverse and complex needs of all the people of Wisconsin.

To date the legislature’s single flex reaction has been to try and criminalize perhaps the most important scientific discovery of our lifetime. Shame on our state legislature for its inertia and lack of policy leadership on perhaps the most important issue it will ever face.

Recently I attended a lecture sponsored by the Wisconsin Academy of sciences arts & letters entitled, “Tales from the Other Biotech Frontier” by Alta Charo of the University of Wisconsin/Madison Law and Medical School. The subtext for this talk was how our policy makers here in Wisconsin can keep our state competitive. Charo had recently spent a year in California and informed us how this state “has become the world’s leader in stem cell research.” She referred to the state’s 3 billion dollar research program and how they plan to loan 300 million dollars each year over ten years to support stem cell research in California.

Charo reviewed the various stem cell stakeholder groups and the role that each of them played since the state’s referendum, Proposition 71, was approved by over sixty percent of the voters. Most of Charo’s talk was a provocative narrative of how a real democracy is supposed to work. All the actors had the opportunity to make their rights, needs and wishes known.

Stakeholders included the governor, legislature, taxpayers, women health groups, the religious community, the university community, biotech companies, patient and social justice activists, the LGBT community, people of color, and disabilities communities. What has played out over the past five years can best be described as how a diverse grassroots democracy is supposed to work when confronted with a very complex and potentially life changing issue.

Wisconsin has not had this debate. Perhaps now with James Thomson and JunyingYu’s latest stem cell alternative discovery ---using human skin cells in place of human embryonic stem cells --- the citizens of Wisconsin will begin talking over their dinner tables and with their neighbors about the tremendous speed with which biotechnology is developing and how it is likely to affect our lives and especially the lives of our grandchildren.

What accounts for the fact that there have been no stem cell policy initiatives from our legislature, including not a dollar, for even basic stem cell research? Should not the Wisconsin taxpayers insist on state policies to insure that research in Wisconsin is conducted in a safe and ethical manner and that public benefits, including affordable and accessible stem cell-based therapies, will follow?

Why should Wisconsin taxpayers pay multiple times for the benefits of stem-cell research? Should they pay for basic research now and again later for costly commercial therapies? Should they pay once when they employ a Wisconsin stem-cell research scientist and again when that scientist makes a major discovery? And, then again, when that publicly supported discovery results in a disease-curing commercial stem-cell-based therapy?

Shouldn’t Wisconsin taxpayers receive a payback if and when a revenue stream results from publicly funded research? Shouldn’t all Wisconsin taxpayers, including our underserved and uninsured populations, benefit from more affordable and accessible stem sell therapies?

And finally, why at the epicenter of embryonic stem cell research, where the first human embryonic stem cell was first derived, is there such a deafening public silence? Only through greater transparent discussions in the public square can we find the clarity and balance that we all seek between those areas where more scientific progress is still needed and areas where caution and perhaps enough human engineering is enough? In a great progressive state like Wisconsin, all the stakeholders, including especially our young people, need to come to the table and reason together.

Unity of Madison Theatre

2007-11-12T12:36:00.001-06:00

To: webmaster@madstage.com

Eric - Deenah Givens, Social Justice Justice Minister and myself (William R. Benedict), a member of Unity of Madison's Social Justice Advisory Council, met with Sarah Blake this morning regarding our plans to develop a small theatre group that would produce plays that would promote campaign finance reform and/or clean government.

We haven't officially named our group yet but for now we will simply call it "Unity of Madison Theatre." Our plans now call for calling for scripts relating to campaign finance reform.

Just want to let you know that Sarah discussed and highly recommended your site as an excellent resource for people like us who wish to start a new theatre. As we go along in the process we plan to use MadStage to help us recruit play participants, advertise and generally in whatever way that we can.

In my blog, I will include periodic postings on our theatre's progress, show dates, etc. I will also include MadStage's URL in my list of links so that when we join and advertise through MadStage it will be easy for my readers to contact us. I also hope that we can join and support this website.

Best regards, Bill Benedict

Restore religion to public square

2007-11-06T17:49:00.000-06:00

Letter to the Editor
Wisconsin State Journal

As a citizen who is deeply concerned about ever growing voter apathy I found Bishop Morlino’s defense of his actions both refreshing and encouraging. With vacuous and expensive sham attack ads replacing a once vibrant political debate, it’s way past time when both right, left and mainstream religion once again join fully and vigorously in the public discourse.

In a society with ever growing political correctness both Bishop Morlino and Pope Benedict have been courageous in clearly stating doctrinal positions, for example, “there is one God…Christ Jesus” – and letting the chips fall where they may.

I become uneasy when I read that America’s religious fervor is becoming increasingly non-doctrinal and private. In such a climate differing ideas ---the heart of a vibrant democracy --- are lost from public debate.

According to religious sociologist Alan Wolfe, what increasingly matters to most Christians are not “ideas” but feelings and “having a personal relationship with Jesus.” If Pope Benedict and Bishop Morlino succeed in bringing their flocks back into the public square greater voter turnout and a richer democracy will follow.

Respectfully,

William R. Benedict
Madison, WI

Government Accountability Board Meeting Public Testimony

2007-11-01T19:00:00.000-05:00

Question at Hand: The Qualifications of the new GAB’s Legal Counsel

My name is William R. Benedict and I would like to thank the members of the Government Accountability Board for allowing me to speak about the qualifications of the Board’s new legal council. As a father and grandfather who is committed to preserving our increasingly threatened democracy for future generations I consider this opportunity indeed a privilege and honor.

In addition to the formal qualifications which are already now in place for the legal council and which I clearly support, this morning I want to strongly support the need for a legal counsel devoted to clarity and pro-activeness as well as the need for a fresh face. I believe these qualities are necessary if Wisconsin is to reclaim its reputation for clean, open and accountable government.

Clarity, because enforcement is much more difficult when the general public remains uninformed, confused, fettered and disengaged from the enforcement process due to not having more complete, user friendly and readily accessible information on campaign contributions.

In a recent 2007 publication by the Brennan Center for Justice, entitled “Campaign Finance in Wisconsin” the authors report appalling Wisconsin performance results in an independent nationwide study. The investigators found the Wisconsin Election Board’s disclosure database was incomplete due to both electronic and more archaic manual reporting practices. Such incongruent and confounding information acted to make the data largely inaccessible and unusable to the public and therefore unacceptable receiving a grade of F for failing. Similarly, even when this information was presented in summary reports, the technical usability of the Board’s website was seriously lacking and received a D. Wisconsin received an overall grade of C- and was ranked twenty second for its disclosure system. This failure should no longer be tolerated.

In a very real sense the Board’s disclosure database is its number one weapon in defense of democracy in Wisconsin. The need for this information to be in user friendly form, readily accessible and transparent, complete and accurate is perhaps the Board’s number one priority. Without it, both the Board’s internal effectiveness, especially with respect to its prosecutorial function, and the public’s right to know, and its ability to engage corruption in whatever form, will remain seriously compromised.

Pro-activeness, because our previous two boards and their leadership, I believe, were too passive and indecisive, particularly in the enforcement of the Board’s laws, rules, orders and formal opinions. It should no longer be acceptable for the new Board or its legal council to continue sitting passively by, waiting for a concerned citizen or group to first gather all the evidence and file a formal complaint.

Rather the legal counsel should take the initiative and proceed when he or she believes that it is likely that a violation has occurred. Perhaps no more important corrective action could be taken to restore the public’s confidence in this new Board.

A fresh face - Most importantly, if the new GAB truly wishes to bring an end to business as usual at our capitol, the new legal council will not be encumbered with any baggage, including loyalties to previously failed practices or systems.

He or she will be a fresh face and bring along fresh ideas for insuring the integrity of Wisconsin politics. It’s clear that the old Boards and their leadership have failed and lost the confidence of the Wisconsin citizen. If the word “accountability” in the Board’s new name is to have any real credibility, it seems to me, the last thing the Board should do is retain the old leadership. When this personnel decision is viewed in the context of our recent corruption scandal along with the subsequent public disfavor and mistrust, there is no valid alternative.

Thanks again so much for allowing me to speak this morning. By your decision to hold this open public meeting you have clearly demonstrated and signaled to me and to all Wisconsin citizens that your trademark will truly be one of transparency, openness and equity. Thank you.

Let’s Not Be Bamboozled

2007-10-24T00:48:00.000-05:00

In order to help ensure more time for each presenter to share their proposal on the 25th, I ask that you take some time to consider the issues I raise here now : Thanks so much for the time that you have already given me. I know you are all very busy. Bill

Sue presented us/me with a beautifully wrapped Easter proposal, and there is little question that it’s a very worthy human, deeply felt issue that we at Unity cannot ignore, nor should we. But that being said, let us not be bamboozled/tricked or thrown off track by such political tactics ---not Sue’s, but the special interests!

In researching my own project proposal I have been alerted that such issues as banning gay marriages and civil unions and promoting concealed weapons legislation are largely diversionary tactics or snares set by large special interest groups to trap us into talking about and working for these hot button issues rather than keeping a steady and persistent focus on real, honest people issues such as clean water, health care, adequate and equitable school funding and campaign finance reform.

Special interests and corporations who have bought and now own our legislators totally, use such legislation as a ruse to distract and deter us from the people’s interests. I was informed that the proof in the putting is the fact these big interests deliberately bring such issues forward not at off year or local elections but at the state wide and congressional elections that are guaranteed to bring out the extreme right who will vote to keep their paid for and bought candidates in office and that will serve the exclusive interests of the special interests, including corporations. I learned that seven or eight states have already used ban gay unions and marriage bans in order to control and maintain the electoral status quo in their respective Houses, and with respect to and significant health care and environmental initiatives as well.

By maintaining such control of your legislators they can continue to pass preemptive legislation that serves their own special interests but, in fact, is best decided at the local level, i.e. no smoking, the removal of old billboard signage, land use, etc. Such big interest here in Wisconsin spent 6.5 to 1.15 million dollars or 13 times more than that spend by everyone else (that includes you and me) to prevent local decision-making. This is big interest’s means or tactics for preventing any fundamental changes from appearing on the legislative agenda.

For these reasons, then, I strongly urge the Advisory Council to assign the proposed “Fair Wisconsin” or the “Love Thy Neighbor” project to the Human Rights sub-committee, in order that more structural and substantive up-stream work can begin now.

With respect the gay union ban, whether it is obtaining petition signatures, canvassing the neighborhood or whatever, these Unity activities need not deter us, nor should they. I would like to remind the group that Dr. Lichterman has already warn us that such seductive and alluring causes will constantly be brought before us. But because our cause is so great to our children and our grand children’s freedom and democracy, let us hold fast.

I believe that here in Wisconsin we are now a critical period where the balance can be tipped either in the direction of campaign reform or continuing down the slippery slope that we are now on. If what has already happened, and is now happening, at our Capitol is not enough to rouse out of complacency, how much more alienation and loss of our freedom can we take?

If there was ever in our Nation’s history a time when we need to stand up and speak up, it is now. A recent Wisconsin poll shows that only 7% of the citizens of Wisconsin believe that their legislators represent their (the people’s) best interests. We need to regain our trust and faith in our public institutions and in our representatives. Your legislator and mine are arrogant and emotionally and economically removed from the people ---you and me. And worse, they believe that they can do no wrong and are untouchable. Let us begin!

Now is time to set up stem-cell oversight

2007-10-19T08:00:00.000-05:00

By William R. Benedict
Wisconsin State Journal
Guest Column
October 19, 2007

This taxpayer attended the recent Madison Plan Commission’s public hearing on the proposed new Wisconsin Institutes of Discovery.

This project is scheduled to come before our City Council on November 6th. The chosen site on the southwest end of the UW campus has been described as “an unusual marriage of public and private dollars.”

The commingling of public, non-profit and proprietary interests can be rich soil for both a “nimble” and successful collaborative race for stem-based cures and for both jobs and medical therapies for all our citizens.

However without a transparent process and proper policies and safeguards in place multiple conflicts of interest could threaten both our public treasury and trust.

Wisconsin taxpayers and all who will benefit from cell-based medical therapies deserve more than good intentions regardless of how sincere and honorable they may be. Like safe and proven architecture and construction practices, safe and proven policy and intellectual property (IP) models now also exist.

These models are specifically designed to detect and prevent special interest conflicts by groups or individuals who are sworn to serve and protect the public interest. They help to ensure that taxpayers will recoup their investment either in reduced taxes or better and more affordable or accessible health care.

Rather than relying only on the assurance of a theoretical trickle down effect in new jobs, taxpayers and their government can be assured a public benefit from funding non-profit and for profit stem sell research and therapy enterprises.

Such policies also require that grantees must sell their therapies based on reasonable pricing. Taxpayers are becoming increasingly astute and now realize that giving out “free” public money, no matter how well intended, does not result in free or reasonably priced therapies.

These public interests protections ensure that those who come to the public trough or who participate in research or biotech enterprises --- medical professionals, entrepreneurs, and all other stakeholders --- must file disclosure forms with the State of Wisconsin that become a part of the public record. Only such transparency and careful tracking of the money can help all of the actors in this wonderful venture avoid the temptation to violate the public’s trust.

A year ago this writer called for a non-profit, nonpartisan and independent citizen stem cell oversight or watchdog group here in Wisconsin. To date Wisconsin citizens largely have remained silent. It’s now time for Wisconsin citizens to step up to the plate and help meet our responsibility to future generations with family members who suffer from cell-based diseases. (My blog, http://danecountyalmanac.blogspot.com/ will be up soon! Watch for it!)

I urgently call upon our state legislature to come forward now with a policy framework which fully addresses policy and IP safeguards, public benefit requirements, transparency and disclosure practices. Lets not let Wisconsin become a “Johnny come lately” on these public safeguards without which we will surely stumble.

With our governor’s clear goal of capturing one-tenth of the stem-cell market for research and medical therapies by 2015, a new research center about to rise, and heaps of community good will and support we must not miss this opportunity for all Wisconsin citizens to succeed.

Make sure taxpayers get payback from funding stem cell research

2007-10-18T23:44:00.000-05:00

Make sure taxpayers get payback from funding stem cell research

By William R. Benedict
The Capital Times Op-Ed
January 17, 2007

In 2006 Doyle helped authorize $50 million in state funding for the University’s planned Wisconsin Institutes for Discovery. This funding by our Wisconsin taxpayers was in part to further jump-start Wisconsin’s still fledgling stem cell research and development initiative.

During this same period Doyle also funded a $5 million plan to recruit and retain stem cell companies; $3 million has gone into Dr. James Thomson’s two companies---Cellular Dynamics, Inc. and Stem Cell Products, Inc.

Steps were also taken to waive Wisconsin Alumni Research Foundation’s (WARF) royalty fees for companies that conduct stem cell research in Wisconsin.

All of this funding, mind you, without establishing any terms whatsoever for obtaining any returns on the tax payers’ investment.

Such blatant generosity has been hailed by Jim Haney, executive director, of the Wisconsin Manufacturers and Commerce, as contributing to “a critical mass” that can only be compared to Silicon Valley.

Such hyped-up support has also caused Tom Still, president of the Wisconsin Technology Council, to tout Dr. James Thomson as a possible candidate for the Nobel Prize.

All of this suggests to me that state funding for for-profit stem cell entities in Wisconsin will increase dramatically in the immediate years ahead.

What is most surprising and disheartening is the fact that neither our public servants nor the media have yet shown any willingness whatsoever to assure accountability to the taxpayer for such public funding.

If Wisconsin taxpayers are paying for this research they have the right to expect a reasonable share of the commercial profits and other benefits.

Present promises about the trickle down effect of such state funding is not acceptable. Wisconsin taxpayers have a right to expect both jobs and more affordable health care from their investment.

An example of such deserved fiscal accountability would be: For every publicly funded for-profit stem cell entity that reports yearly revenue of a certain sum or more, i.e. $500,000, there should also be a sum certain payback of some pre-established amount to the tax payer.

Larger and more robust for-profit stem cell entities that report yearly earnings of $500 million or more would pay back the public investor through pre-established royalties.

In addition to these financial returns, for-profit entities that receive public funding can reasonably be expected to make their stem cell therapy products available to uninsured Wisconsin residents consistent with industry standards.

They should also be expected to provide discounted prices to publicly fund health care plans, and to grant Wisconsin residents preference if their stem cell therapies are in short supply.

Wisconsin middle class taxpayers, the uninsured working poor and the sick should not continue to acquiesce and do nothing out of fear and trumped up accusations that such ethically sound taxpayer-centered accountability practices will somehow squash private competition and send our local scientist-entrepreneurs and in-state jobs packing.

Neither should we acquiesce and continue to hold false assurances that best practice standards, intellectual property rights, National Academy of Science policies and ethics, or existing drug pricing controls will somehow now protect the taxpayers’ investment in stem-cell research and the commercial products that will surely follow.

None of these above “safe-guards” have proven effective in the recent past in curbing the flagrant and arrogant abuse of the commercial profit-driven med-tech and pharmaceutical industry.

I am certain that progressive Wisconsin will step up to the plate and meet this responsibility to the taxpayers and to future generations who may have family members who are suffering from cell-based diseases and will be the beneficiary of Wisconsin’s premiere stem cell research and development program.

Now is the time to address and resolve these taxpayer inequities and assure more affordable health care to all of us.

Payback for Tax Payer Funding Called For

2007-10-18T23:40:00.000-05:00

Payback for Tax Payer Funding Called For
Letter to the Editor

On February 13th of this year Governor Doyle will send his proposed $50 billion dollar budget to the legislature. In 2006 Doyle helped authorize $50 million in state funding for the University’s planned Wisconsin Institutes for Discovery. This funding by our Wisconsin taxpayers was in part to further jump-start Wisconsin’s still fledgling stem cell research and development initiative.

During this same period Doyle also funded a $5 million plan to recruit and retain stem cell companies; $3 million has gone into Dr. James Thomson’s two companies---Cellular Dynamics, Inc. and Stem Cell Products, Inc. Steps were also taken to waive Wisconsin Alumni Research Foundation’s (WARF) royalty fees for companies that conduct stem cell research in Wisconsin. All of this funding, mind you, without establishing any terms whatsoever for obtaining any returns on the tax payers’ investment.

Such blatant generosity has been hailed by Jim Haney, executive director, of the Wisconsin Manufacturers and Commerce, as contributing to “a critical mass” that can only be compared to Silicon Valley. Such hyped-up support has also caused Tom Still, president of the Wisconsin Technology Council, to tout Dr. James Thomson as a possible candidate for the Nobel Prize.

The print media’s unceasing editorializing about Dr. James Thomson’s “research commercialization model” along with the imperative for ever more public funds to support this model “for a more robust job creation,” all suggest that much is going to be expected from you and I, the taxpayer in the years ahead.

All of this suggests to me that state funding for for-profit stem cell entities in Wisconsin will increase dramatically in the immediate years ahead. What is most surprising and disheartening is the fact that neither our public servants nor the media have yet shown any willingness whatsoever to assure accountability to the taxpayer for such public funding. If Wisconsin taxpayers are paying for this research they have the right to expect a reasonable share of the commercial profits and other benefits.

In addition to direct financial returns or commissions, for-profit entities that receive public funding should reasonably be expected to make their stem cell therapy products available to uninsured Wisconsin residents. They should also be expected to provide discounted prices to publicly fund health care plans, and to grant Wisconsin residents preference if their stem cell therapies are in short supply.

Wisconsin middle class taxpayers, the uninsured working poor and the sick should not continue to acquiesce and do nothing out of fear and trumped up accusations that such ethically sound taxpayer-centered accountability practices will somehow squash private competition and send our local scientist-entrepreneurs and in-state jobs packing.

Wisconsin needs to step up to the plate now and meet this responsibility to the taxpayers and to future generations who suffer from cell-based diseases. Now is the time to address and resolve these taxpayer inequities and assure more affordable health care to all of us.

Respectfully submitted,

William R. Benedict

Convergence

2007-10-05T23:43:00.000-05:00

A Dane County Almanac
And Other Short Stories

This little book is a revelation of the author’s most intimate feelings
and thoughts about his life on planet earth.

Convergence
August 18, 2005

In recent weeks there has appeared to me such an extreme convergence in my readings which I can only best describe as uncanny. It’s almost like somebody or some thing is taking my hand and carefully leading me along on an unknown journey. If it is not Suzanne referring me to a particular book, then it’s me suddenly discovering exactly what I need in a magazine or newspaper’s articles. It’s as if I am just stepping out into the water, and when I step out a force just in the nick of time places the next stepping stone down in front of me to take the next step. As best as I can determine at this time the most common denominator on my search has to do with life-transitions.

From reading Full Catastrophe Living, I am again introduced to Mindfulness meditation and the rhythmic transitions from breathing in (life) to breathing out (death). This leads me to Matthew Fox and Dying, Resurrection, And Reincarnation. And then, this leads me to read Paul Krafel’s Seeing Nature and I learn how the life process on earth is in a continuous re-cycling mode, as is, I also learn, is the cosmos. It too, like all living things, also undergoes this pattern of living, dying and resurrecting. I learn too that the stars, our sun, supernovas each have their lifetime and then come to an end but not before giving off their progeny. According to the big bang theory, our Solar System is born, including our Planet Earth.

In my last piece – Life on Planet Earth – I referred to Matthew Fox’s perspective of looking to God’s outward or manifest world, mainly to our own planet as one way of better experiencing God’s creation. I cited Paul Krafel’s “Seeing Nature” because in this book he puts the reader in touch, and with much vividness, with what he refers to as the spiraling life cycle of mother earth. He describes how nature maintains its vital balance through a process of constantly rebirthing herself. We talked about “Gaia Hypothesis” and how life is a self revolving and sustaining process which creates and maintains an environment favorable to life.

Today I would like to go back 4.6 billion years ago and share with you what science now knows about how our hot stony planet first generated a nascent life form. Dr. Bruce Jakosky, a geologist at the University of Colorado in Boulder estimates that it was about then that our earth cooled enough to have atmosphere, oceans, and some dry land. In his forthcoming book, “Astrobiology, Science and Society,” Jakosky notes that the rock record is still too sparse to allow us to clearly determine the processes that were associated with the origin of life.

At a recent workshop held in Yellowstone National Park for science writers, researchers described their latest thinking about the origin and development of life on earth. Most briefly, their hypothetical scenario places our earth’s beginning at about 4.6 billion years ago. By between 4.0 and 3.8 billion years ago inorganic molecules (composed of clustered atoms) grew and clotted together into “protocells,” (little bags of chemicals that took in nutrients and discharged wastes) which formed organic compounds needed for early life.

In this pre-biotic stage before living organisms appeared, volcanoes spewed lava and gases rich in hydrogen, sulfur, iron and other minerals. Chemical reactions between hot water and rocks produced more and more complex molecules. From this clumps of inorganic molecules eventually became living cells containing an early version of DNA known as RNA. (DNA contains the instructions to make proteins, the building blocks of every living thing.)

Now I want leave this brief scientific description of the geologic and chemical origin of our planet and return to Paul Krafel, and once again, pick up at the point when after the earth cools, and the oceans and atmosphere makes their appearance, we soon see that out of the algae and moss arises other small plant life. Soon shrubs and small trees appear, along with insects, flowers, toad stools and an abundance of life. From small single cell animals become more complex and advanced mammal forms and ultimately human life
evolves as well.

Life on Planet Earth

“Bill's Primer on the Genome”: A book review of the “Genome”

2007-10-01T13:57:00.000-05:00

A Dane County Almanac
And Other Short Stories

“Bill's Primer on the Genome”
A book review of the “Genome”

“The fuel on which science runs is ignorance. Science is like a hungry furnace that must be fed logs from the forests of ignorance that surrounds us. In the process, the clearing we call knowledge expands and the longer its perimeter and the more ignorance comes into view.”

Since Matt Ridley wrote the above in his book, “Genome – The Autobiography of a Species in 23 Chapters,” scientists have devoured gigantic forests of ignorance in mapping the DNA structure of human life. The clearing that this knowledge has produced is greater than any other single scientific breakthrough in human history.

This being the case, it is not surprising that in my journey to more clearly discover my own vision, Ridley’s book is brought into my living room. I recently wrote about reading Brian Swimme’s book, “The Universe Story.” These new scientific cosmologies literally broaden my context and orientation many thousand times over. If you would have asked me just last week whether I would ever discover anything comparable I would have said certainly not. Certainly if one is talking about the macro world, perhaps this would still be my answer. Little did I know that going inward into the micro field of genetics I would find an equal if not even greater discovery?

Soon after settling into the Ridley’s Genome I hesitated. With my limited scientific background, particularly in the biological sciences, will I really be able
journey deep, deep down into the human cell. Could this science journalist write to bring this new micrometer world into my awareness? Just when I was beginning to complain to myself that the author should have included a “gene primer” at the outset, there it was. Incidentally I should note here that I learned later in this book that I may have a gene which serves to motivate me whenever I am puzzled, uncertain or confused. If this is really so, it clearly kicked in when the primer appeared.

From this brief little primer I learned that the human body contains 100 trillion cells. The size of each cell is less than a tenth of a millimeter (or a pin point) across. Inside each of our white cells is a black blob called a nucleus? Inside each nucleus are two complete sets of the human genome. Each genome set contains 30,000 to 80,000 genes on the same twenty-three chromosomes. Before the discovery of the genome we did not know there was a document at the heart of every cell three billion letters long of whose contents we knew nothing.

What came next seemed almost too good to be true. I learned that the author will use a book as a metaphor to explain all I will need to know in order to understand his entire book. Immediately I remembered some early advice that my father gave me when I was less than ten years old.

He said, “Bill. If you really want to get an education or become a scholar, all you really need to know is how to read. Once you learn to read, you will be able to learn anything there is to learn.” These words acted to motivate me to want to read everything the author had to say about the human gene.

In the author’s book metaphor there are twenty-three “chapters,” for the twenty-three human chromosomes. Each chapter contains several thousand “stories” called genes. Each story or gene is made up of “paragraphs,” called exons, which area interpreted by “advertisements” called introns. Each paragraph is made up of “words” called codons. Each word is written in “letters” called bases. The Gerome book is written with only three letter words, and using only four letters: A, C, G, T. DNA is a chemical and RNA is also a chemical. Genetics is really just this simple! Before the discovery of the genome, we did not know there was a document at the heart of every cell three billion letters long of whose contents we knew nothing.

Continuing to use the book metaphor, I learn that this “book” can photocopy (or replicate) and read itself. A single strand of DNA can copy itself. The code is written not on paper but on long chains of sugar and phosphate called DNA molecules. There are one million codons (words) in the human genome. Everything in the body is made from protein. Every protein is a gene. The body’s chemical reactions are catalyzed by proteins known as enzymes. I learned that when genes are replicated mistakes are sometimes made or a mutation occurs. There are 64 different codons or words and many of these words the same meaning.

With the genome there are 4,000 million years of earth history and five million species. One of these five million species is a conscious human being. Consider also for a moment, that among the 6 thousand million people that has been on the planet, you and I were privileged enough to be born in the country where the “word” (DNA structure) was discovered. It was during our short lifetime that the greatest, simplest, and most surprising secret in the universe was discovered. Our DNA is a recipe or instructions on how to replicate me and you. It’s a message written in a code of chemicals – one chemical for each letter. Chromosomes are large molecules designed to carry our heredity.

DNA are not merely structurally important but functionally active substances in determining the biochemical activities and specific characteristics of cells, and that by a means known as chemical substance it is possible to induce predictable and hereditary changes in cells. Life, to a rough approximation, consists of three atoms - hydrogen, carbon and oxygen. They make up 98% of all atoms in living beings.

Finally, and this will be the end my genetic understanding to date, I want to distinguish between two chemicals, protein and DNA. A protein consists of chemistry, living, breathing, metabolism and behavior. It is what biologists call the phenotype. DNA consists of information, replication breeding, and sex, and is what biologists call the genotype.

Does the existence of the Genome now mean that it will be only a few years before scientists create a genetically modified human being? After all we already have a cloned sheep. Is our genetic make-up the primary determinant of our free will as humans?

The author of Genome puts it this way. “The crude distinction between genes as implacable programmers of a Calvinists predestination and the environment as the home of liberal free will is a fallacy.” Ridley argues that if genes can affect behavior and behavior can affect genes, then the causality is clearly circular and not single-dimensional.

Paradoxically, our genes, because they are unique to each of us, are perhaps our greatest protection against the many determining threats that face us daily. These many wide and varied determinate conditions include both genetic and environmental. We have the most to fear from the latter and it is the most pervasive.

Again, Ridley says it best. “Freedom lies in expressing your own determinism, not somebody else’s. It is not the determinism that makes the difference, but the ownership. If freedom is what we prefer, then it is preferable to be determined by forces that originate in ourselves and not in others. Part of our own revulsion at cloning originates in the fear that what is uniquely ours could be shared by another. The single-minded obsession of the genes to do the determining in their own bodies is our strongest bulwark against loss of freedom to external causes.

We know that there is no single gene for free will in the genome. Rather there is something infinitely more uplifting and magnificent: a whole human nature, flexibly preordained in our chromosomes and idiosyncratic to each of us. Everybody has a unique and different nature.

Some Musings about the Small Group

2007-09-29T00:49:00.000-05:00

Have you ever made bread from adding liquid with flour and other ingredients such as salt, shortening and yeast? Small groups go through a similar fermentation period eventually maturing into a full blown and living group culture. Webster’s New World Dictionary describes a small group as “a number of persons gathered closely together and forming a recognizable unit.” The social psychologist would add that the group’s birth is dependent upon at least three members in regular interaction over time. The group’s active life is at stake whenever member attendance begins to decrease.

Is a social group, then, a living organism? Like humans, a group also goes through a life-cycle. Like us, groups have early, middle and late stages of development. Each group’s development undergoes a series of changes. Also, like humans, most groups also have a life expectancy. The group members, when in regular interaction, literally make up the life-blood of the social group. Webster actually defines the word “life” or “living” as “to have a wide variety of social/group experiences.” Life is also defined as “the activities of a given time or in a given setting and the people who take part in them.” Between the beginning of the group and its ending, like a human, there is indeed life in the group.

Some would even argue that groups also have a spirit or soul. The group’s life is carried on in the individual members’ consciousness or subconscious, often long after the active phase of the group as ceased. In this very real sense the spirit of the group endures far beyond its active or living state. One can argue that as long as three or more members continue to consciously hold in their mind the group’s memory, actions and values, the group’s spirit lives on. Robert Merton and other sociologists refer to this phenomenon as a person’s significant reference groups.

One’s group membership in this sense never fully ends and its imprint on the member continues throughout life. Social psychologists would argue that it is the series of group affiliations throughout our lives that truly make us human. Life in a group changes the human being. Members are never quite the same after they have experienced membership in a small group.

This group’s formation process begins when the members convene their very first meeting and ends when the very last meeting is held former group members, long after the last meeting, continue to carry that group’s unique culture and character on throughout their life. When new members first convene there is excitement, often near elation, on the part of its members. Expectations are high. The group’s early phase can also be described like fruit and other growing things as ripening, budding, blooming, flourishing, and later shedding and decaying.

So you have decided to join a small group. Joining a new group is like starting kindergarten all over again. New faces, new rules and new situations. Joining a new small group can sometimes really be a bummer. Suddenly, after being relatively satisfied and comfortable in your existing family and work groups you must begin all over again in a strange land and learn a new small group culture and language. When one joins a new group they first must decide to give up some time with their existing group affiliations at home, work and in the larger community.

Joining a small group induces self-examination, renegotiation and a temporary retreat from other already enduring social relationships. Membership in a group is also about both growth and regression. After all you will now become a new and different person. Many of your group experiences will vicariously be shared with your friends and family members. In fact it may be that your closest family member or friend will see your new membership as ranging from mild annoyance to “a pain in the ass” if you will pardon my expression.

Joining a group is always a seductive new adventure. One imagines new friends, opportunities and experiences. Members agree to commit themselves and especially their time to the group’s purpose and goals. There is a mutual social contract which also requires that the members give their time and energy to the new group over a sustained period. Members often see the new group as an opportunity to explore issues of both deep personal and social concern and interest.

Joining a new group can be as strange and exciting as your first bicycle ride. There is the fear of uncertainty and failure, of possibly proving to be incompetent, and feelings of ambivalence and perhaps initial second thoughts of “who really needs this?”

For many the desire to join and participate in a small group over a period of one or two years is the result of an awareness of a need for radical change in some critical aspects of one’s life. Joining a small group may represent a general dissatisfaction with existing group affiliations or with your present lifestyle.

Small group membership is a perilous journey with many roadblocks and mine fields but also with opportunities and delights along the way. Joining a small group can be compared to an older adult who returns to school after a long absence. After functioning quite well in her many social roles she may suddenly find a strange disequilibrium and confusion.

Have you ever thought about what effect your membership will have on your family and others? New members do not always realize how their commitment and time apart from family and friends will be viewed by others.

Members may need to give up certain evenings and weekends with their loved ones to this strange new group. Both parties can expect to experience stress on the home front as the new member learns to divide her energy between her new group and existing demands.

After all you are suddenly incorporating new “family-like” members into your life. It’s fair to say that in many respects you have just added a dozen or more new siblings to your larger “family.” You now have another small family-like group but with a totally different culture – new house rules, new expectations and values, new affections and repulsions. You have journeyed into a new territory.

Therefore it will be perfectly natural for you to experience levels of stress and anxiety as you pass through these various stages and crises of any new group. For example we can expect at least one or more members will be subject to some form of scape-goating during the life of the group. After all with each new relationship each member can be seen as lying somewhere along a “deviance scale” of one to ten when compared with your existing repertoire of relationships.

All human groups and group members experience natural cycles that affect both group morale and individual member feelings. This is best illustrated by what is known as the “Meninger Morale Curve” which follows a set pattern. It simply states that there will likely be a periodic change in the morale and feeling of group members over time due to three kinds of “crises” inherent in the group’s development. Initially, morale tends to be somewhat elevated due to the hopes, expectations, and dreams of those who have expended their time and energy to join the group.

As the realities of the group’s purpose and goals and competing demands on the member’s time become clear, including the limited resources and so on, this involvement often produces a depressing skid downward. Nothing is quite as good as it initially appears.

Nonetheless, a reasonable well functioning group can manage to pull itself up by accepting and confronting the challenges and mobilizing its energy. The third or final downturn is produced by the approaching end of the group and the inevitable separation. This up and down process often blocks the members’ initial optimistic and rational expectations concerning group development. Small group members must learn to be adventurous and take risks during these downward spirals and be prepared to support or “buck-up” individual members when their spirits naturally begin to sag.

With a new group the new member naturally must change her existing activity pattern. She will expend considerable time and energy trying to redefine herself with both her existing groups and her new group. One’s old lifestyle is now changed and old routines and expectations are now forever altered. You will never be quite the same person!

Especially in the early stages of the group, members begin to critically assess the other members capacities both for their ability to gratify their own personal interests and needs as well as the extent that each can meet the welfare and needs of the larger group. How does each member measure up and what will be expected of me?

The risk of messing things up abounds on the part of every member in this new enterprise. To expect maturity and competence from each member, while allowing a measure of regression for each, is always a challenging and vital balance. Membership is always a delicate balance between support and challenge. In every new group experience each member asks herself to what degree will I risk myself while also encouraging others around me the same opportunities to grow?

If at the close of the group experience members can see that some of their original expectations for the group have been met, then the group has been a success.

I began these remarks by comparing the development of a small group to making bread. I would like to conclude by expanding on this analogy by calling attention to the complexity and diversity of small groups. When members interact they must simultaneously adjust their behavior to each individual in the group as well as to the group as a whole. This often makes for a very lively and exciting experience for all. Just like good bread requires the right blending of liquid, flour, yeast, salt, shortening, and perhaps some special spices, groups too, in order to create a viable and creative group culture, need all the diverse personality traits, talents, and energy that we as members can bring to the table.

The Left Hand of God - A Book Review

2007-09-29T00:44:00.000-05:00

Chapter 3
“The Voice of Fear and the Voice of Hope”

Rabbi Michael Lerner has written a book entitled, The Left Hand of God---Taking Back our Country From the Religious Right. In Chapter 3, The Voice of Fear and the Voice of Hope, pages 77-92, he writes about two world views.

The first world view he describes, he calls the Right Hand of God. It is the view of fear, isolation and selfishness. The Left Hand of God he refers to as generosity and hope. The former he also refers to as the Cynical Realism view, and the latter as the Spiritually Conscious view.

Cynical Realism views each of us as looking after ourselves as we try to keep an advantage over all others. In fact this fear of others is considered just plain common sense. This is also the state of “heightened alert and fear.”

The Spiritually Conscious view, on the other hand, sees the human being as one who desires a loving connection with others and seeks ways to cooperate with one another. He or she is most fulfilled when we are needed by others and can provide generously to others. He or she feels that their state is intrinsically bound to all others. This state of consciousness Learner calls the “heightened generosity and hope.”

These two world views can also be seen as two opposite paradigms or cultures. The culture of hope is often viewed by the Cynical Realists as being “out of touch with reality, and just plain nonsense. These two world views can be viewed as existing on two opposite poles and on a continuum. Along this continuum at any given time in our history social, political and spiritual energy flows or oscillates back and forth between these two poles. During the Great Depression of 1929, The Joe McCarthy era, the Cold War, and more recently 9/11 Americans adopted a state of fear mentality. This can best be seen in the color codes and alerts, the suspicion, the spying and the assigning certain groups and nations with divine rights, and the others as part of the evil empire.

In contrast during the New Deal and the Civil Rights Movement eras the spirit of hope and generosity reigned. In this culture of hope and greater solidarity all humans are treated as being in this divine image and in our essence as all being good. We are gentle and compassionate with one another. We believe that evil and injustice can be overcome and that we need not to live in fear. We believe in the continuous transformation for a greater good for all. God commands us to pursue justice. God is caring and generous and so are we.

In the culture of fear, God is seen as an all powerful Warrior with a Strong Right Hand and strong judgment and combativeness.

Which view we choose to take is influenced by the following factors:

1. Our family legacy
2. The socialization process that we experienced at school and in our neighborhood
3. Our current life situation, i.e., do we feel left out, estranged, alienated, discriminated against, etc..
4. Our religious beliefs
5. Current popular ideas, i.e., the media, Hollywood, etc.
6. How the people closest around us act.

We can use this fear vs. hope paradigm to assess any phenomenon in our lives, including our own campaign finance reform project: Do public funded political campaigns create more generosity, goodness and compassion in this world, than privately funded campaigns? Which one is more likely to produce power over and which one will more likely produce power sharing with others? Will the marriage referendum bring about a greater generosity and hope for all or will it further isolate and create barriers to our democracy?

We can use the fear/hope or faith standard to assess the effect of a TV show, a sermon or speech, a movie, a news story, a commercial or advertisement, and a small group meeting like our own.

As a further standard or screening device, I would add here our own moral values. For example, we can use Talcott Parsons’ five pattern variables: Self vs. the larger collectivity; our family or tribe vs. more universalistic values; one’s performance and achievement vs. the diffuse quality of the person; seeing people narrowly for what they can do for us or more diffusely as divine beings; and seeing people only economically and rationally or also with feelings, or affectivity vs. affectivity neutrality.

At the small group level or at the nation state level we can survey the four functional requirements or functions and choose the more just direction.

1. Do we wish to spiral outward into the larger community and participate as full citizens in an ever more inclusive democracy or do we wish to assume a more insular and parochial role in our in-group or nation state?

2. Do we wish to participate in goal achievement as equals or should we abdicate or rights and influence to the elites of this world.

3. Do we wish to recognize the worth and divinity in each of us and see each person as a multidimensional and complex human being or only as a consumer or employee?

4. Are we to be satisfied within the narrow solidarity of our own special group or nation/state or do we wish to play a larger and more integrative and inclusive role in this universe?

I Had a Dream Last Night

2007-09-27T02:09:00.000-05:00

- I dreamed of a day when the average citizen will be able to have equal time with her legislator, and corporate executives and lobbyists will have to wait their turn.

- I dreamed that it’s now common practice for all state and national political campaigns to be fully funded out of our state and federal budget.

- I dreamed that someday soon, talk of the “public interest” will no longer be empty rhetoric or a joke at our State Capitol.

- I dreamed of the day when candidates will spend all their time debating the issues in stead of raising corporate and special interest dollars in order to hold on to their seat.

- I dreamed of a day when my grand children will grow up and be able to run for public office without placing their family’s lively hood in jeopardy.

- I dreamed of a day when the people of Wisconsin will take back their democratic institutions from corporate and special interests.

- I dreamed of a day when once again a public safety net will be placed snugly around each of our children regardless of their parents’ economic status.

- I dreamed that America will begin to value people for more than what they can earn or achieve but also for who they are.

- I dreamed that America will begin to develop universal values that transcend our own personal, state and national interests and begin to consider the interests of all of life.

A New Land Use Ethic Needed

2007-09-27T01:59:00.000-05:00

The Journal’s Friday editorial – “Take aim at safe, productive hunting” - it seems to me was one sided and missed the mark. The Journal confused the reader by pairing a discussion of hunter gun safety with the tragic trespassing incident of just a year ago. It chose to deny and ignore the real problems which had to do with trespassing and the need for greater civility on the part of both hunter and land owner. While the Journal article is correct that there is a declining pattern in hunting gun safety incidents, it missed both the opportunity and a critical public need to speak to the real issue – more and more hunters with less and less non-congested space to hunt in. It failed to mention the fact that the number of private property incursions is steadily rising.

The real problem is more hunters and an ever increasing number of smaller private property holdings creating more boundaries to cross, combined with an outdated land use ethic that encourages confrontation, exclusivity and elitism. What is called for is a land use ethic which emphasizes mutual respect and trust on the part of both the hunter and the landowner. It calls for greater camaraderie and compassion and less and less focus on both actors’ differences. The hunter and the landowner are both special in their common love of respect for mother earth. That is the bond that can bring both land owner and hunter together in the years ahead.