Wednesday, September 29, 2010

New research model will speed up treatment of chronic diseases

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

Sunday, September 12, 2010

Ask the candidates about state funding for stem cell research

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

Thursday, September 9, 2010

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

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

Tuesday, September 7, 2010

New book changes the conversation on mental illness

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

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?