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
Wednesday, October 1, 2008
Tuesday, September 30, 2008
GAB acts to ban sham issue ads
I was privileged to attend the recent Government Accountability Board (GAB) meeting and was so proud and pleased to see that all six of these non-partisan board members seemed to me determined to put an end to sham issue ads.
In a nut shell this process refers to the misuse of so called “issue ads” by the super-rich and powerful to anonymously attack and defeat a political candidate through a barrage of insanely costly negative TV ads especially in the last few days before Election Day.
The Wisconsin Democracy Campaign estimates that nearly eight million dollars was spend on such spurious ads during the last two Supreme Court elections. It is clear to this citizen that the Board has both the authority and the means to bring an end these corrupt practices. After all, this watchdog group has the statutory authority to fight corruption and/or the appearance of corruption, and to ensure the integrity of our election process.
How many of us really believe that our constitutional fathers ever intended for us to equate our so-called “free speech” rights with exorbitant corporate spending rights while the people’s right to peacefully assemble and speak out at political events erodes more and more each day. We can be sure that the Wisconsin Lobbyist Association and mistaken free speech advocates will continue to fight for the right to spend, spend, and spend and thus squander away and make more impotent each day the legitimate and true voice of the people.
Let all Americans who love our sacred liberties, follow the lead of these six courageous clean government watchdog officials and more recently John Wiley and the Epic Corporation, and stand up with them to the corporate lobbyists and the Wisconsin Manufacturers and Commerce. Call the Board’s office at 608-266-8005 and commend them for their industry and fine work since beginning in January 08 and assure them that they have your support.
Respectfully, William R. Benedict
In a nut shell this process refers to the misuse of so called “issue ads” by the super-rich and powerful to anonymously attack and defeat a political candidate through a barrage of insanely costly negative TV ads especially in the last few days before Election Day.
The Wisconsin Democracy Campaign estimates that nearly eight million dollars was spend on such spurious ads during the last two Supreme Court elections. It is clear to this citizen that the Board has both the authority and the means to bring an end these corrupt practices. After all, this watchdog group has the statutory authority to fight corruption and/or the appearance of corruption, and to ensure the integrity of our election process.
How many of us really believe that our constitutional fathers ever intended for us to equate our so-called “free speech” rights with exorbitant corporate spending rights while the people’s right to peacefully assemble and speak out at political events erodes more and more each day. We can be sure that the Wisconsin Lobbyist Association and mistaken free speech advocates will continue to fight for the right to spend, spend, and spend and thus squander away and make more impotent each day the legitimate and true voice of the people.
Let all Americans who love our sacred liberties, follow the lead of these six courageous clean government watchdog officials and more recently John Wiley and the Epic Corporation, and stand up with them to the corporate lobbyists and the Wisconsin Manufacturers and Commerce. Call the Board’s office at 608-266-8005 and commend them for their industry and fine work since beginning in January 08 and assure them that they have your support.
Respectfully, William R. Benedict
Tuesday, September 9, 2008
A public health care benefit for all Wisconsin citizens
Dialogue
Madison-area Urban Ministry
July-September 2008
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.
Madison-area Urban Ministry
July-September 2008
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.
Friday, August 15, 2008
Demand payback on biotech strategy
Wisconsin State Journal
Steven Clark’s recent guest column in the State Journal, “State needs biotech investment strategy” should make every taxpayer in Wisconsin --- and particularly families with chronic stem cell-based diseases --- sit up, take notice and act now. Clark found that Wisconsin’s biotech initiative has no clear overarching focus.
I was surprised to learn that Wisconsin has not placed its miraculous human embryonic stem cell (hESC) discoveries upper most in its strategic biotech initiative.
Wisconsin has already sold an inclusive license to one of the largest biotech companies in the world, which clearly cut taxpayers out of any special payback or affordable access to these products. Wisconsin families with stem cell-based diseases need to demand a full accounting of why this has happened now before any more of our intellectual property is compromised and squandered.
It also appears that the Madison biotech flagship needs to be expanded to include all the public and private biotech resources – both research and business - from throughout the state.
This is not the case. Wisconsin taxpayers and health care consumers ultimately will pay the price for our shortsightedness. As Clark notes, if research is not translated into businesses, it does nothing for the people or the economy.
Also, unlike in Wisconsin, the California taxpayers and stem-cell based consumers have been promised by state statute that they will receive a payback for any successful stem cell-derived commercial product.
That is, the state will receive a certain percentage of any revenue derived from the state-funded research, and low income and the uninsured residents will have equal access to the miracle health products that follow.
In Wisconsin, the home of embryonic stem cell research, there is little evidence thus far that any overall plan or policy exists to ensure that Wisconsin taxpayers will receive a similar payback and public access to affordable stem cell therapies when they appear in your local drugstore.
The bottom line: the Wisconsin biotech flagship is adrift without a rudder. Wisconsin lacks a clear mission and policy platform that would help guide it through what is projected as a $500 billion dollar industry in 2020 or sooner.
In a practical sense, this means that when your governor or the Wisconsin Department of Commerce awards a biotech company or scientist or entrepreneur a grant, you will not find any mission-driven clause or revenue- earned payback requirement in that contract.
I urge all taxpayers, especially those who are working for health care reform and families with stem cell-based diseases, to call your legislators and ask them what they are doing to make sure that Wisconsin’s investment in human embryonic stem cell research is protected from any further unraveling of this enormously lucrative “home-grown” resource.
Benedict lives in Madison.
Steven Clark’s recent guest column in the State Journal, “State needs biotech investment strategy” should make every taxpayer in Wisconsin --- and particularly families with chronic stem cell-based diseases --- sit up, take notice and act now. Clark found that Wisconsin’s biotech initiative has no clear overarching focus.
I was surprised to learn that Wisconsin has not placed its miraculous human embryonic stem cell (hESC) discoveries upper most in its strategic biotech initiative.
Wisconsin has already sold an inclusive license to one of the largest biotech companies in the world, which clearly cut taxpayers out of any special payback or affordable access to these products. Wisconsin families with stem cell-based diseases need to demand a full accounting of why this has happened now before any more of our intellectual property is compromised and squandered.
It also appears that the Madison biotech flagship needs to be expanded to include all the public and private biotech resources – both research and business - from throughout the state.
This is not the case. Wisconsin taxpayers and health care consumers ultimately will pay the price for our shortsightedness. As Clark notes, if research is not translated into businesses, it does nothing for the people or the economy.
Also, unlike in Wisconsin, the California taxpayers and stem-cell based consumers have been promised by state statute that they will receive a payback for any successful stem cell-derived commercial product.
That is, the state will receive a certain percentage of any revenue derived from the state-funded research, and low income and the uninsured residents will have equal access to the miracle health products that follow.
In Wisconsin, the home of embryonic stem cell research, there is little evidence thus far that any overall plan or policy exists to ensure that Wisconsin taxpayers will receive a similar payback and public access to affordable stem cell therapies when they appear in your local drugstore.
The bottom line: the Wisconsin biotech flagship is adrift without a rudder. Wisconsin lacks a clear mission and policy platform that would help guide it through what is projected as a $500 billion dollar industry in 2020 or sooner.
In a practical sense, this means that when your governor or the Wisconsin Department of Commerce awards a biotech company or scientist or entrepreneur a grant, you will not find any mission-driven clause or revenue- earned payback requirement in that contract.
I urge all taxpayers, especially those who are working for health care reform and families with stem cell-based diseases, to call your legislators and ask them what they are doing to make sure that Wisconsin’s investment in human embryonic stem cell research is protected from any further unraveling of this enormously lucrative “home-grown” resource.
Benedict lives in Madison.
Monday, July 21, 2008
State must protect investment in stem cell research
The Capital Times/Opinion, Madison, WI
As a Wisconsin taxpayer I am grateful and proud of Dr. James Thomson and UW-Madison’s bioscience community for their human embryonic stem cell (hESC) discovers. But as I study the funding issues relating to Wisconsin’s stem cell enterprise I have become increasingly concerned with how our state is managing the intellectual property associated with these potential lucrative discoveries.
One of my questions has to do with why Wisconsin agreed to give exclusive rights to the Geron Corp. in Menlo Park, Calif., for using Wisconsin-patented stem cells to treat heart, diabetes and neurological disorders? My concerns have to do with both the nature of the diseases chosen and the potential economic and health care implications involved.
I am also concerned with the potential conflict of interest involved and exactly by who and why this decision was made and whose interests are best being served?
After all, the potential financial returns to the state of Wisconsin in terms of future health care costs are enormous, not to mention who it is who will ultimately control and most benefit from any cell-based cures in these three major disease areas.
As users of heart drugs and other therapies, I and many other Wisconsin citizens are very dependent upon medications. As both a taxpayer and patient I am concerned about how Wisconsin-funded cell-based discoveries are being managed. Are they being managed in a way that can best ensure Wisconsin families more effective and affordable heart disease, diabetes and neurological care?
Or, will my grandchildren also have to travel to Minnesota for their heart medications? Will nearly half of Wisconsin citizens still have to go without full access to medications and more affordable health care in 2020?
I urge all Wisconsin citizens, but especially those who are working for health care reform here, to begin to connect the dots between our basic biomedical research and development decisions and our existing health care crisis before it is too late.
The central question is: how can we move from our state funding policy of providing a blank check to biotech and pharmaceutical companies and scientists/entrepreneurs to routinely attaching health care payback safeguard to all our innovation grants and other tax incentives?
Perhaps the place to begin is with better and more accurate information about who really is paying for this research. We can begin by eliminating two major myths: that university funding for science discoveries is generally paid for by the private sector, and that public revenue sharing would discourage scientific research.
Wisconsin citizens need to consider who owns the university, who really pays for the laboratories, equipment, supplies, the buildings, utilities and the salaries of scientists and staff who work there? Who supports and sustains the gigantic and robust interdisciplinary and collaborative resources deposited there? It is the taxpayers, the students and alumni (you and me) who support and sustain this marvelous and successful research enterprise.
Ultimately Wisconsin taxpayers’ ability to deal with the above concerns successfully will depend in large part on how we as a statewide community make these value-based decisions in the full light of public scrutiny. Presently these decisions are being made in board rooms and by CEOs sitting on university-based patent-making non-profit foundations. What are called for at this juncture are less government and media assurances and much more public discussion based on much better information and transparency.
As a Wisconsin taxpayer I am grateful and proud of Dr. James Thomson and UW-Madison’s bioscience community for their human embryonic stem cell (hESC) discovers. But as I study the funding issues relating to Wisconsin’s stem cell enterprise I have become increasingly concerned with how our state is managing the intellectual property associated with these potential lucrative discoveries.
One of my questions has to do with why Wisconsin agreed to give exclusive rights to the Geron Corp. in Menlo Park, Calif., for using Wisconsin-patented stem cells to treat heart, diabetes and neurological disorders? My concerns have to do with both the nature of the diseases chosen and the potential economic and health care implications involved.
I am also concerned with the potential conflict of interest involved and exactly by who and why this decision was made and whose interests are best being served?
After all, the potential financial returns to the state of Wisconsin in terms of future health care costs are enormous, not to mention who it is who will ultimately control and most benefit from any cell-based cures in these three major disease areas.
As users of heart drugs and other therapies, I and many other Wisconsin citizens are very dependent upon medications. As both a taxpayer and patient I am concerned about how Wisconsin-funded cell-based discoveries are being managed. Are they being managed in a way that can best ensure Wisconsin families more effective and affordable heart disease, diabetes and neurological care?
Or, will my grandchildren also have to travel to Minnesota for their heart medications? Will nearly half of Wisconsin citizens still have to go without full access to medications and more affordable health care in 2020?
I urge all Wisconsin citizens, but especially those who are working for health care reform here, to begin to connect the dots between our basic biomedical research and development decisions and our existing health care crisis before it is too late.
The central question is: how can we move from our state funding policy of providing a blank check to biotech and pharmaceutical companies and scientists/entrepreneurs to routinely attaching health care payback safeguard to all our innovation grants and other tax incentives?
Perhaps the place to begin is with better and more accurate information about who really is paying for this research. We can begin by eliminating two major myths: that university funding for science discoveries is generally paid for by the private sector, and that public revenue sharing would discourage scientific research.
Wisconsin citizens need to consider who owns the university, who really pays for the laboratories, equipment, supplies, the buildings, utilities and the salaries of scientists and staff who work there? Who supports and sustains the gigantic and robust interdisciplinary and collaborative resources deposited there? It is the taxpayers, the students and alumni (you and me) who support and sustain this marvelous and successful research enterprise.
Ultimately Wisconsin taxpayers’ ability to deal with the above concerns successfully will depend in large part on how we as a statewide community make these value-based decisions in the full light of public scrutiny. Presently these decisions are being made in board rooms and by CEOs sitting on university-based patent-making non-profit foundations. What are called for at this juncture are less government and media assurances and much more public discussion based on much better information and transparency.
Thursday, June 26, 2008
Legislature: commit on stem cell research
Wisconsin State Journal/ Your Views
June 26, 2008
A recent study suggests that stem cell programs that exist in a stable and favorable policy and funding environment are continuing to thrive. Conversely stem cell programs that are hampered by inadequate and sporadic funding are clearly underperforming.
So far Wisconsin has been blessed with a huge investment only in human capital. This has been contributed tirelessly and generously by Thompson and his UW colleagues. We cannot afford however to rest on our laurels and human capital alone.
What is needed is a bi-partisan initiative that goes beyond good will and provides for a secure and continuous public and private funding base. This support and funding must be accompanied by a message from the people of Wisconsin ---our state Legislature—that tells venture capitalists and committed scientists alike that Wisconsin means to be in the stem cell business for the long time.
Wisconsin legislators can no longer continue to sit by while Wisconsin citizens and families continue to suffer daily from debilitating diseases and an ever weakening economy.
June 26, 2008
A recent study suggests that stem cell programs that exist in a stable and favorable policy and funding environment are continuing to thrive. Conversely stem cell programs that are hampered by inadequate and sporadic funding are clearly underperforming.
So far Wisconsin has been blessed with a huge investment only in human capital. This has been contributed tirelessly and generously by Thompson and his UW colleagues. We cannot afford however to rest on our laurels and human capital alone.
What is needed is a bi-partisan initiative that goes beyond good will and provides for a secure and continuous public and private funding base. This support and funding must be accompanied by a message from the people of Wisconsin ---our state Legislature—that tells venture capitalists and committed scientists alike that Wisconsin means to be in the stem cell business for the long time.
Wisconsin legislators can no longer continue to sit by while Wisconsin citizens and families continue to suffer daily from debilitating diseases and an ever weakening economy.
Friday, May 23, 2008
Check legislators’ record before voting
Capital Times - Readers View
Thanks to the Wisconsin Democracy Campaign all you need to do now is click on www.wisdc.org/pr042908.php and see objectively how your state senator and Assembly representatives voted on six major clean government bills during this past year.
I worked as a program evaluator for over thirty years. How refreshing it was to see that our state legislators are finally going to have to stand on their voting record instead of how much money they have to spend on their campaign.
The representatives, based on their votes, were divided into one of four categories based not on their promises, good looks or how big their smile is but strictly on their voting record for clean government.
Before voting this fall, you only need to know one thing about your legislator. What clean government category did he or she earn? The four include democracy defender, public ally, bystander and public enemy?
Wisconsin voters will know their votes really did count this time to help clean up the sordid mess in their state capital. You can take control of your government if you act now.
Thanks to the Wisconsin Democracy Campaign all you need to do now is click on www.wisdc.org/pr042908.php and see objectively how your state senator and Assembly representatives voted on six major clean government bills during this past year.
I worked as a program evaluator for over thirty years. How refreshing it was to see that our state legislators are finally going to have to stand on their voting record instead of how much money they have to spend on their campaign.
The representatives, based on their votes, were divided into one of four categories based not on their promises, good looks or how big their smile is but strictly on their voting record for clean government.
Before voting this fall, you only need to know one thing about your legislator. What clean government category did he or she earn? The four include democracy defender, public ally, bystander and public enemy?
Wisconsin voters will know their votes really did count this time to help clean up the sordid mess in their state capital. You can take control of your government if you act now.
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