Friday, February 15, 2008

Wisconsin State Funded Stem Cell Research

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

Tuesday, February 12, 2008

Comprehensive Campaign Finance Reform Legislation

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.

Monday, February 11, 2008

Governor’s speech misses mark on stem-cell innovation

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.

Friday, February 1, 2008

Weigh Hillary’s sex like Obama’s race

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

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