Fall 2008
Advocate – Coalition of Wisconsin Aging Groups (CWAG)
Some of you may be aware of Dr. Jamie Thomson’s human embryonic stem cell (hESC) discoveries at the University of Wisconsin.
Wisconsin is now considered an international leader in bio-medical research throughout the world. Most health experts agree that Thomson’s discoveries will have a revolutionary impact on how medicine will be practice in the 21st century.
No one should underestimate the potential impact that these discoveries will have on Wisconsin’s economy and on the health and welfare of Wisconsin citizens. Regrettably, to date, unlike in the State of California, there has been little discussion about how Wisconsin should protect and use this lucrative multi-billion dollar resource.
For example, have you heard any discussion or speculation as to what impact our state’s good fortune could have in terms of our health care crisis and in making life saving and enhancing medications available to our elderly, low income and underserved population?
Isn’t this a situation where meaningful revenue sharing between Wisconsin taxpayers and the bio-tech and pharmaceutical industry should be considered beyond the simplistic promises of greater job creation? How should Wisconsin use this gold standard resource?
Wisconsin now holds three broad human embryonic stem cell patents. It should be used to help assure that citizens with chronic and debilitating diseases have access to affordable cell-based drugs and therapies.
Undoubtedly this issue will be the number one social and health care issue of the twenty-first century.
Fortunately, the Coalition of Wisconsin Aging Groups, Wisconsin’s leader in advocating for prescription drug reform, now has the opportunity to help spearhead this discussion in Wisconsin. At its recent annual meeting, CWAG adopted the following 2008-2010 Platform Priority: “Support legislation for federal and state funding of stem cell research, along with public healthcare safeguards, with benefits affordable to everyone.”
For more information on this issue and proposed policy see wiscellnow.org and citizensforcures.org.
Respectfully, William R. Benedict, ACSW
CWAG District 1
Sunday, October 19, 2008
Wisconsin’s Stem Cell Initiative Needs Strategic Plan
On November first former UW-Chancellor, John Wiley, will assume his new duties as interim director of the public side of the Wisconsin Institutes of Discovery. Dr. Wiley has already said that he initially intends to attend to the “pre-operational” details associated with construction and staffing of this research facility set to be completed on the UW campus in 2010.
I hope Wiley will also begin the process of developing a comprehensive strategic plan to guide this stellar research ship through the storms of this next decade. What is critically needed at this juncture is a “Wisconsin Way” like strategic plan that is broadly conceived and community-based to include all the stakeholders in this journey.
All budgets, regardless of how important the mission, have fiscal and other resource constraints. For Wisconsin scientists to succeed they will need the support and input from every quarter including patient and consumer organizations, capital and material donor groups, and the aging and special needs communities to mention just a few.
Without measurable milestones to gauge our progress and identify our priorities Wisconsin’s premier stem cell research program will surely flounder. Taxpayers should encourage broad stakeholder discussions to identify alternative models of public funding, including revenue sharing, intellectual property, and licensing. All with the aim of ensuring that all Wisconsin citizens have access to affordable cell-based diagnostics and therapies.
I hope Wiley will also begin the process of developing a comprehensive strategic plan to guide this stellar research ship through the storms of this next decade. What is critically needed at this juncture is a “Wisconsin Way” like strategic plan that is broadly conceived and community-based to include all the stakeholders in this journey.
All budgets, regardless of how important the mission, have fiscal and other resource constraints. For Wisconsin scientists to succeed they will need the support and input from every quarter including patient and consumer organizations, capital and material donor groups, and the aging and special needs communities to mention just a few.
Without measurable milestones to gauge our progress and identify our priorities Wisconsin’s premier stem cell research program will surely flounder. Taxpayers should encourage broad stakeholder discussions to identify alternative models of public funding, including revenue sharing, intellectual property, and licensing. All with the aim of ensuring that all Wisconsin citizens have access to affordable cell-based diagnostics and therapies.
Friday, October 17, 2008
Wisconsin campaign questionnaire results
Three watchdog organizations – the Wisconsin Democracy Campaign, the League of Women Voters and Common Cause – have again come together this pre-election season to survey all our legislative candidates about where they stand with respect to Wisconsin clean government reform.
It seems to me that after this state’s caucus scandals and more recently the buying off of our State Supreme Court candidates via sham issue ads any respectable candidate running for public office in Wisconsin would want to put their best foot forward and if not actually support clean government, then at the very least, complete and return a non-partisan survey form.
But not in Wisconsin! Would you believe that nearly two-thirds of our state legislative candidates declined even to take a public stand on clean government reform issues. In fact to date only seven of the 25 senate candidates (28%) have even returned the questionnaire. Of the 243 candidates for state assembly, only 95 or 39% replied to the survey.
Do Wisconsin voters need any stronger evidence about what to expect when our new legislature reconvenes this January? As a former program evaluator, I am struck by the 33 percent return rate and how closely this figure compares with Wisconsin’s voter satisfaction index. Based on the above survey return rate is it any surprise that nearly 8 out of 10 Wisconsin citizens indicate that they are dissatisfied with their legislators and do not believe that they any longer represent their best interests.
Having worked with state legislators on campaign finance reform in recent years my best guess is that at least 75 percent of our legislators’ first allegiance is with the special interests that fund their election campaigns. I think this helps explain the low return rate and is a strong harbinger of what the citizens of Wisconsin can expect again during the next legislative session --- more deadlock and little if any clean government reform.
If you wish to find out how much your legislative candidate is invested in clean government reform in Wisconsin check the League of Women Voters’ web site.
It seems to me that after this state’s caucus scandals and more recently the buying off of our State Supreme Court candidates via sham issue ads any respectable candidate running for public office in Wisconsin would want to put their best foot forward and if not actually support clean government, then at the very least, complete and return a non-partisan survey form.
But not in Wisconsin! Would you believe that nearly two-thirds of our state legislative candidates declined even to take a public stand on clean government reform issues. In fact to date only seven of the 25 senate candidates (28%) have even returned the questionnaire. Of the 243 candidates for state assembly, only 95 or 39% replied to the survey.
Do Wisconsin voters need any stronger evidence about what to expect when our new legislature reconvenes this January? As a former program evaluator, I am struck by the 33 percent return rate and how closely this figure compares with Wisconsin’s voter satisfaction index. Based on the above survey return rate is it any surprise that nearly 8 out of 10 Wisconsin citizens indicate that they are dissatisfied with their legislators and do not believe that they any longer represent their best interests.
Having worked with state legislators on campaign finance reform in recent years my best guess is that at least 75 percent of our legislators’ first allegiance is with the special interests that fund their election campaigns. I think this helps explain the low return rate and is a strong harbinger of what the citizens of Wisconsin can expect again during the next legislative session --- more deadlock and little if any clean government reform.
If you wish to find out how much your legislative candidate is invested in clean government reform in Wisconsin check the League of Women Voters’ web site.
Friday, October 3, 2008
Consider fairness in stem-cell push
Wisconsin State Journal/Guest Column
Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.
Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.
It raises a host of moral, stewardship and health care issues along with critical questions of priority.
Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or for elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?
For more than 100 million afflicted Americans and their families, stem cell research is much more than a health, economic and political issue. It is their No. 1 concern. It’s a matter of whether they have enough hope and energy to suffer through another day and whether real help will ever come.
It is heartbreaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.
Resident and patient organizations will remain disengaged as long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life-and-death decisions in the hands of the scientists.
A consensus on social justice and fairness issues should be attained through vigorous public engagement at every stage of the stem cell research process--- from the business and research design to product development and distribution.
All research operates in the context of a particular human being, institution, state and budget. It would be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.
A host of other issues should be brought to the table as well, such as the severity of the illness to be targeted, present gaps in existing therapies, public health needs and the needs of our most vulnerable citizens?
In publicly supported educational and research centers like our own UW-Madison, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself.
Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.
When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise.
Public engagement and consideration of these potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies.
If Wisconsin’s stem cell research initiative is to succeed Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.
Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.
Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.
It raises a host of moral, stewardship and health care issues along with critical questions of priority.
Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or for elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?
For more than 100 million afflicted Americans and their families, stem cell research is much more than a health, economic and political issue. It is their No. 1 concern. It’s a matter of whether they have enough hope and energy to suffer through another day and whether real help will ever come.
It is heartbreaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.
Resident and patient organizations will remain disengaged as long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life-and-death decisions in the hands of the scientists.
A consensus on social justice and fairness issues should be attained through vigorous public engagement at every stage of the stem cell research process--- from the business and research design to product development and distribution.
All research operates in the context of a particular human being, institution, state and budget. It would be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.
A host of other issues should be brought to the table as well, such as the severity of the illness to be targeted, present gaps in existing therapies, public health needs and the needs of our most vulnerable citizens?
In publicly supported educational and research centers like our own UW-Madison, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself.
Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.
When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise.
Public engagement and consideration of these potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies.
If Wisconsin’s stem cell research initiative is to succeed Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.
Wednesday, October 1, 2008
World Stem Cell Summit - Time is running out for many Americans
Each person attending the World Stem Cell Summit held in Madison this past week left this conference with a great sense of urgency and personal responsibility to help speed up stem cell research. As a patient advocate who strongly supports state funding of stem cell research I wish to share with you my most important concerns.
Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.
It raises a host of moral, stewardship and health care issues along with critical questions of priority. Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?
It is often forgotten that the question of stem cell research is much more than a major health, economic and political issue. For over one hundred million afflicted Americans and their families it is their number one personal concern above all others and one that affects all their lives daily. For them it has to do with whether they have sufficient hope and energy to suffer through another day and whether real help will ever come.
Most of all, for these afflicted Americans it is the most urgent health and social concern of all. It is even more heart breaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.
As long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life and death decisions in the hands of the scientists, citizens and patient organizations remain disengaged. Rather than taking this advice, such social justice and fairness issues should be consensually derived through vigorous public engagement at every stage of the stem cell research process, from the business and research design to product development and distribution. This is so because all research operates in the context of a particular human being, institution, state and budget. It would clearly be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.
Rather than focusing only upon profit versus general welfare and quality of life considerations a host of other issues should be brought to the table as well, i.e., severity of the illness to be targeted; present gaps in existing therapies; does it meet a public health need, and the needs of our most vulnerable citizens?
Both for the sake of equity and for the welfare of our planet earth social justice and fairness also calls for wherever possible to share new research discoveries in an open and transparent manner and as broadly as possible.
Furthermore, in publicly supported educational and research centers like our own UW, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself. Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.
When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise. Hopefully, the grantee or entrepreneur will then be obligated to select areas of research that will yield the greatest increased welfare of its citizens.
Public engagement and consideration of the above potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies. If Wisconsin’s stem cell research initiative is to succeed, Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.
It would be fool hardy indeed to rely exclusively upon university faculty research oversight committees or intellectual property officials to make such complex life and death value decisions as well as decisions about the state’s future general welfare and economy. To counter such a possibility taxpayers and patient representatives should sit on university oversight and review committees; frequent, open and transparent stakeholder meetings should be encouraged; and alternative public benefit and intellectual property models welcomed.
This state will not likely confront any greater single issue in the twenty-first century involving its quality of life and economic future. Conservative market forecasts range from a fairly modest $100 million to as much as $10 billion by 2010. By 2030 stem sell research and development is projected to reach over 500 billion dollars. This figure does not include the potential trillions more saved by the elimination or amelioration of the most costly and debilitating diseases for more than one hundred million citizens.
Respectfully,
William R. Benedict
Because Wisconsin’s stem cell research program has such extraordinary potential for advancing scientific knowledge that may result in therapies and cures for a wide range of chronic diseases and injuries it becomes an extremely important social justice and fairness issue.
It raises a host of moral, stewardship and health care issues along with critical questions of priority. Should we prohibit or refuse to fund certain types of stem cell research? Which therapeutic stem cell applications should we choose for development? Will we invest in medical cures for the many or elitist medical enhancements and longevity for the few? Will the novel therapies be fairly distributed and affordable? And most important, who is to decide?
It is often forgotten that the question of stem cell research is much more than a major health, economic and political issue. For over one hundred million afflicted Americans and their families it is their number one personal concern above all others and one that affects all their lives daily. For them it has to do with whether they have sufficient hope and energy to suffer through another day and whether real help will ever come.
Most of all, for these afflicted Americans it is the most urgent health and social concern of all. It is even more heart breaking when one discovers that clinical trials to bring this research into the clinic are happening all over the world while the work here lags far behind.
As long as our governor continues to counsel Wisconsin citizens to simply continue to sit back and leave these life and death decisions in the hands of the scientists, citizens and patient organizations remain disengaged. Rather than taking this advice, such social justice and fairness issues should be consensually derived through vigorous public engagement at every stage of the stem cell research process, from the business and research design to product development and distribution. This is so because all research operates in the context of a particular human being, institution, state and budget. It would clearly be an injustice if all stem cell research objectives were framed only for their potential applicability and profitability.
Rather than focusing only upon profit versus general welfare and quality of life considerations a host of other issues should be brought to the table as well, i.e., severity of the illness to be targeted; present gaps in existing therapies; does it meet a public health need, and the needs of our most vulnerable citizens?
Both for the sake of equity and for the welfare of our planet earth social justice and fairness also calls for wherever possible to share new research discoveries in an open and transparent manner and as broadly as possible.
Furthermore, in publicly supported educational and research centers like our own UW, citizen groups must determine the best balance between direct potential clinical applications versus the longer term search for knowledge itself. Too much emphasis on direct application alone will act to undercut the otherwise serendipitous nature of discovery and impose an authoritarian structure that is alien to the scientific culture.
When public funding dollars are involved, a social justice focus helps mediate an otherwise often greedy market-centered research enterprise. Hopefully, the grantee or entrepreneur will then be obligated to select areas of research that will yield the greatest increased welfare of its citizens.
Public engagement and consideration of the above potentially contentious social justice issues can help mitigate further delay in the development of these cell-based therapies. If Wisconsin’s stem cell research initiative is to succeed, Wisconsin taxpayers must begin now to wrestle with these issues in a thoughtful and prudent manner.
It would be fool hardy indeed to rely exclusively upon university faculty research oversight committees or intellectual property officials to make such complex life and death value decisions as well as decisions about the state’s future general welfare and economy. To counter such a possibility taxpayers and patient representatives should sit on university oversight and review committees; frequent, open and transparent stakeholder meetings should be encouraged; and alternative public benefit and intellectual property models welcomed.
This state will not likely confront any greater single issue in the twenty-first century involving its quality of life and economic future. Conservative market forecasts range from a fairly modest $100 million to as much as $10 billion by 2010. By 2030 stem sell research and development is projected to reach over 500 billion dollars. This figure does not include the potential trillions more saved by the elimination or amelioration of the most costly and debilitating diseases for more than one hundred million citizens.
Respectfully,
William R. Benedict
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