Monday, July 27, 2009

New prez affects Discovery Institute

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.

Thursday, July 23, 2009

I need your help!

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

Thursday, June 25, 2009

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

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

Friday, May 22, 2009

Cures For Chronic Diseases Will Shake Up System

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

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.

Wednesday, May 13, 2009

If Not Now, Then When?

“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

Sunday, May 3, 2009

Protect Wisconsin’s cutting edge science

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