Friday, January 28, 2011

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

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

(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

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

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

Sunday, January 2, 2011

Letter on stem cells didn’t tell whole story

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