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

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