Health Care Solution

As a family member with several cell base diseases I was delighted to read The Capital Times’ recent guest column, “FTC fighting deals to keep generic drugs off shelves.” Federal Trade Commissioner, Jon Leibowitz wrote, “Getting health care costs under control is a daunting and multifaceted challenge.”

He then went on to report how pharmaceutical companies collude with their competitors to keep lower generic alternatives to prescription drugs off the market and how the commission plans to ban such “pay-for-delay” settlements.

Leibowitz is challenging all citizens and health care consumers who are waiting for a single payer universal health care plan to arrive must meanwhile continue to take steps to

bring about more accessible and affordable health care to all our citizens. In this spirit I want to propose another simple approach that would save health care consumers billions of dollars annually.

Stop federal and state funding of biotech research and development companies without providing public health care benefit safeguards to ensure that stem cell derived cures and medications will be accessible and affordable to all Wisconsin citizens.

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.

A genuine public health care benefit for public funding of stem cell research can range from a percentage of biotech profits beyond a certain threshold to simply ensuring that drug costs and other stem therapies in Wisconsin will be managed and made at reasonable costs to all our citizens. Other public interests policy concerns have to do with whether medication discounts are to be given to low and medium income patients and other underserved groups?

Will Wisconsin taxpayers have any say to help ensure that such stem cell funding targets  prioritized disease groups such as Alzheimer’s, diabetes and sickle cell anemia versus pursuing products that have only short-term commercial and cosmetic benefits?

Millions of our state tax dollars have already been spent and more have been added to this year’s biennium budget without any such consumer safeguards.  State innovation grants, tax credits and a host of other public financial incentives are being invested and now are in the state administrative pipeline.

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 concerns are not already on your civic or health care organization’s radar screen and advocacy agenda such neglect could be catastrophic for Wisconsin health care consumers.

The fundamental policy questions that you and your organization should be asking is should your organization support legislation for federal and state funding of stem cell research with public health care payback safeguards?

Respectfully yours,

William R. Benedict,

Madison.

Letter on stem cells didn’t tell whole story

Wisconsin State Journal, Letter to the editor

To support his argument that non-embryonic stem cell research is the stem cell of choice when measured by the percent of allocated funding grants, a recent writer referred to the California Institute of Regenerative Medicine, and noted that it recently approved funding for 19 grants worth $67 million with only five going to human embryonic stem cell research.

We were not told, however what proportion of the total funding went to non-embryonic or embryonic funding. Nor did the reader indicate that CIRM was conceived in 2005 by an overwhelming majority of California taxpayers in their opposition to President George Bush’s restriction on embryonic stem cell research.

Also CIRM has already allocated one of its $3 billion loan initiatives for embryonic stem cell research, much of which has already come back to California in private matching funds.

A study authored by Aaron Levine of Georgia Institute of Technology provides detailed information about stem cell research grants handed out by six states including California between December 2005 and December 2009. His findings detail that most human embryonic stem cell research conducted in the United States is funded by states, not the federal government. The share of stem cell funding given for embryonic stem cell research varied widely, from 97 percent in Connecticut to only 21 percent in New York, for example.

For more info go to stemcellaction.org.
-William R. Benedict, Madison

Institutes’ hoopla ignores chronically ill

Capital Times - Sunday, December 19, 2010

As a patient advocate for stem cell research I was privileged to attend the Grand Opening of Wisconsin’s Institutes of Discovery (WID). WID is a spacious and remarkably attractive building. A richly deserved sense of accomplishment was in evidence at the event.

We were introduced to the key actors in the building’s initial concept and innovative design. Much time was spent discussing, who actually first had the dream of WID. Was it Governor Doyle or John and Tashia Morgridge? No, well then how about the Wisconsin Alumni Research Foundation’s Carl Gulbrandson or the interim director of the public side of WID, John Wiley? Each speaker who went to the podium modestly and graciously attributed WID’s initial idea to one or more others. Lastly, each of the UW scientists who were selected to locate their lab at WID was introduced and their lab’s specialty celebrated with loud applause from the crowd.

The grand opening of WID was most certainly a UW-Wisconsin signature event and properly celebrated in every way, with one exception: There was no mention of those so loudly touted as one of the chief reasons for WID’s creation back in 2004---those who suffer daily from catastrophic and chronic diseases.

It was in 2004 that Gov. Doyle first hailed what was to become WID “as the creation of a world class stem cell research center.” This appellation of WID given by Doyle now six years ago is in stark contrast with this year’s speeches and media accounts surrounding WID’s dedication.

This glaring omission of those suffering from chronic diseases could certainly not go unnoticed by anyone reading the extensive news articles heralding WID’s celebration or those in attendance at the Grand Opening. If there was ever an example of radically re-writing Wisconsin history, this will have to stand alone.

In news articles beginning in late November of this year and during the Grand Opening ceremonies on December 2nd many reasons for WID’s construction were cited. One speaker referred to WID as an engine for creativity.

Other speakers and writers referred to WID as the heart of collaboration and the interdisciplinary community; a boost to Wisconsin’s economy and job creation; a center for community out-reach and education for the young and seniors; a space to inspire generations to come; and a space for every constituency to gather; the center of medical science and technology, and a trading center of ideas.

Apparently stem cell research committed to curing chronic disease is no longer the Wisconsin Institutes of Discovery’s paramount reason for being. UW indeed will be challenged to win back the trust of those suffering from chronic diseases in Wisconsin.

William R. Benedict is a patient advocate for stem cell research.

William R. Benedict: Embryonic stem cell research is necessary

Letter to the Editor, Capital Times

As a patient advocate for state funding of stem cell research in Wisconsin I was somewhat dismayed to read the letter to the editor written by the wife of the Republican gubernatorial nominee, Scott Walker. I say this for two reasons. First, while we all might like it if adult stem cells were sufficient in and of them selves; this simply is not the case, as stated by the scientific community.

In 2008 and 2010 I attended the World Stem Cell Summit sponsored by the Genetics Policy Institute. This international yearly gathering is attended by top scientists from all over the world. I can assure you that at both of these meetings their voice as a group was crystal clear. To bring about a speedy cure of our most life threatening diseases, all types of stem cells need to be studied. Not just adult stem cells.

Secondly I was dismayed and disappointed that possibly our next first lady of Wisconsin would deliberately insert into her letter what is for almost all voters a non-issue. Human cloning has already been outlawed by all the national ethics and best practice guidelines throughout the world and is also specifically prohibited by law in almost every state in these United States.

I want a first lady that will tell it as it really is. The facts are that already discarded human embryos are taken from in-vitro fertilization clinics and donated by women to be used for ESC research. And, why shouldn’t these already discarded cells be used to save life and help heal the chronically ill and suffering?

Benedict is a stem cell patient advocate and blogs at: danecountyalmanac.blogspot.com

Click for original letter.

2010 World Stem Cell Summit & New Bio Research Model

As patient advocate for stem cell research and a local columnist I have just returned from the 2010 World Stem Cell Summit and was delighted to see UW's Dr. Tim Kamp and Jordana Lenon at this exciting world-wide conference. First I want to give a special thanks to Mr. Bernard Siegel, J.D., founder and director of the Genetics Policy Institute (GPI), and Mr. Alan Fernandez, Director of Development. Without their support my report below would not have been possible.

Dr. Kamp was one of the Summit's speakers and Ms. Lenon both made UW's stem cell science presence known via both staffing UW's Stem Cell Regenerative Medicine Center's booth, and also contributed a very comprehensive article to the 2010 World Stem Cell Report which described Wisconsin's stem cell science and technology and the unprecedented opportunities it now offers the world.

Presented in the U.S. Policy, Ethics and Science section of this Report, the article itself is both a fascinating and eye-opening story on the Wisconsin stem cell story to date from the first extracted embryonic stem cell accomplished right here in our own State of Wisconsin. This article is a "must read" for any Wisconsin stem cell advocate or supporting taxpayer in this state.

Since this event I was privileged to report in the Capital Times on both this World Stem Cell Summit in Detroit and on a new and exciting stem cell science research model which I hope and pray will hasten the translation of these miracle stem cell discovers to the chronic patient's bedside.

To read my Capital Times story, you can click on this link.

William R. Benedict: New model will speed treatment of chronic diseases

Click here to read my guest column in the Capital Times.

New research model will speed up treatment of chronic diseases

On Thursday, December 2, 2010 the University of Wisconsin will celebrate the opening of the Wisconsin Institutes of Discovery (WID). I wish David Iverson, a former news reporter for Wisconsin’s public television, would be invited to speak on this auspicious occasion.

While many will see this event as a huge investment in innovation technology and higher paying jobs for Wisconsin’s shrinking economy, for many of us who suffer daily from disabling chronic diseases see the event as the beginning of a bright new day of hope. Hope that this new science facility’s foremost mission is to shorten the period before they are once again whole and free of pain once more.

What a unique and perfect choice. Mr. Iverson cut his teeth in Madison as a cub reporter and is now perhaps one of the most articulate and renown public news reporter in the nation. Iverson was diagnosed with Parkinson’s disease in 2004 and has been reporting on the search for more effective treatments for that disease and others ever since. What would be more symbolic and appropriate than to have such an informed spokesman for all the people who suffer daily from these burdensome and often oppressive diseases? (Together this includes virtually all of us.)

For those readers who saw Iverson’s news story on PBS’s News Hour last Thursday evening they will recall he reported on a new research model for traditional academic research which is best characterized by patient centered-ness, interdisciplinary collaboration and greater transparency. Most briefly, Iverson’s story reported on the huge gap between when the basic research is published and when big pharma and the biotechnology industry becomes involved and actually invests to bring it to the market.

This gap is often referred to as the valley of death and refers to the huge sum required for the repeated series of never ending human trials. Big pharma is finding fewer and fewer pieces of research worthy and complete enough to invest in. They increasingly refuse to invest in the translation phase of the innovation development process largely owing to a lack of clinical data still tucked safely away in the lead researcher’s lab.

Many believe that the slow pace of medical advancement is directly related to the researchers’ perceived outcomes from their research. Iverson tells the story of how the National Institute of Health spends $30 billion dollars each year to produce 800,000 published papers but its grantees are unable to produce a patient-centered treatment option sufficiently developed enough to persuade big pharma and/or the biotechnology industry to invest further in their work.

If the basic research is to be credible in terms of this new research model the researcher begins by immediately changing their beginning question of “why do certain conditions exist, to a new focus of, how can I repair this patient’s specific condition? Rather than starting with an intriguing scientific question, the researcher begins by asking what can we do treat a patient with this kind of disease? Using this approach in a multiple sclerosis example, the question is not why does the myelin go missing which sheathes the nerves, but more practically, how can we repair it?

This patient-centered research question must begin immediately to be integrated into the entire research/medical enterprise involving academics, researchers and medical scientists, including the clinical staff, family physician, patients and their caretakers.

After viewing this News Hour presentation, I immediately went to my computer and reviewed the Wisconsin Institutes of Discovery’s key objectives for this public-private partnership. As I compared the new research model discussed above with WID’s key objectives, I was delighted to see that one key objective is to “Create the potential for a fundamental transformation of human biology and medicine.”

Another objective included, “Provide cutting edge scientific advances for clinical application and translation in the UW-Madison Medical School’s new Wisconsin Institutes for Medical Research.” This WID objective appears to me to be consistent with the need to move more quickly and directly with the clinical science necessary to transform the research question into patient treatment.

Note the new locus where this clinical science is to now take place -- mostly all right here in the UW-Madison region. Presently there exist a costly disconnect between the origin of the research and where and who does the grunt clinical work necessary to eventually help bring it into the clinic. Any thing less for a first class world-wide and preeminent multidisciplinary science center now seems almost unbelievable and short-sighted.

I was struck by the convergence already apparent between this new research model discussed above with UW WID’s key objectives. I believe that David Iverson would be able however to give these objectives a fresh and clearer meaning to both the taxpaying health consumer and the business community as well. When such a transformation process is completed biotech innovations will become far less costly and happen much more often, and again, Wisconsin will lead the way.

If this article serves to bring these two points of view closer together (a new and more expeditious research model and the journey that WID is about to begin) then it will have met its objective as well.

Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

Ask the candidates about state funding for stem cell research

Capital Times – Guest Column

Did you know that the State of Wisconsin has a “hands off” policy from discussing state funding of embryonic stem cell research? It can be compared to our government’s military policy of “Don’t Ask Don’t Tell” (DADT) Essentially it says that all Wisconsin citizens who hold a “state funding” policy perspective or orientation in Wisconsin’s stem cell funding debate should maintain a DADT attitude or position.

While of course no such formal policy in fact exists in Wisconsin, it’s a DADT-like solution that our state officials and legislators from both parties have informally adopted, and unfortunately, as has our public media here in Wisconsin. If you have any doubt about this I would like to point your attention to five exhibits of evidence from taken from various media sources following last week’s very controversial federal court decision to block federal funding of embryonic stem cell research.(An appeals court on Sept. 9 temporarily stayed the decision; the legal battles are far from over.)

Exhibit A: 8/25/10 By WSJ science reporter David Wahlberg. While first providing some historical background going back to 1998 for the reader, Wahlberg makes no mention whatever that state funding remains non-existent in Wisconsin. One would think that such information would be very relevant for the reader to know in an article dealing with a research funding crisis affecting thousands of Wisconsin citizens who suffer daily from cell-based chronic illnesses, and for Wisconsin future high tech job market.

Exhibit B: 8/3110 In the WSJ Our Opinion entitled, “Don’t stem promising research,” It refers to “this recurring hurdle… to promising medical research.” It then goes on to weigh the likelihood that Congress will intervene to address this obstruction, but nevertheless has absolutely nothing to say about what other funding alternatives Wisconsin itself has at its disposal to help alleviate this episodic federal financial shortfall. --- such as some form of on-going state legislative funding.

Exhibit C: 9/1/10 WSJ Letter to the Editor, entitled “Why does source of funding matter?” The writer notes that “If the National Institutes of Health cannot invest in such research, it falls to the private sector.” How about our own state government?.

Three other letters to the editor this past week shared their views on this federal funding decision. None however mention any state financing alternatives.

Exhibit D: 9/1-7/10 By The CapTimes reporter, Todd Finkemeyers. His article entitled “Stem cells back in the spotlight, A setback for UW research could boost gov candidate Barrett.”

Unlike the science piece in Exhibit A, this was certainly a political piece and beautifully framed so as not violate Wisconsin’s DADT rule. Finkemeyer quotes Democratic candidate, Tom Barrett: “As governor, I will fight for essential stem cell research, and I will make sure scientists and researchers – not politicians – drive our research and technology agenda.” In this statement Barrett has adopted Gov. Doyle’s code words. Translated it means Barrett is telling the Wisconsin voters that he also will not support “state funding of stem cell research” but will support the use of federal dollars alone for Wisconsin’s stem cell research.

If indeed Barrett truly believes that embryonic stem cell research is essential and our best hope for a cure for thousands of Wisconsin citizens with serious chronic diseases, and that such research will be critical in Wisconsin’s economy far into the future, then why doesn’t he want to consider every means possible to ensure the continuity and financial support necessary to make Wisconsin’s stem cell research program truly one of the best in the world? Especially since the tepid federal support continues to threaten the health and safety of millions of citizens who suffer daily from catastrophic diseases?

I believe that this issue --- state stem cell funding ---is too important to continue a day longer to allow the present DADT rule to continue in Wisconsin’s political commons. This wily subterfuge must be seen for what it is. Cover for political leadership that doesn’t have enough trust and faith in the Wisconsin taxpayer to allow them the opportunity at the polls to decide this issue once and for all. Without such an opportunity for the people to be heard, Wisconsin’s stem cell research program will move further and further into mediocrity.

Ask your political candidates now running for office and your present political leaders why they continue not to lead on an issue so important to so many?


Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

“Don’t Ask Don’t Tell”: Untold story of Wisconsin’s stem cell funding

Did you know that the State of Wisconsin has a “hands off” policy from discussing state funding of embryonic stem cell research? It can be compared to our government’s military policy of “Don’t Ask Don’t Tell” (DADT) Essentially it says that all Wisconsin citizens who hold a “state funding” policy perspective or orientation in Wisconsin’s stem cell funding debate should maintain a DADT attitude or position.

While of course no such formal policy in fact exists in Wisconsin, it’s a DADT-like solution that our state officials and legislators from both parties have informally adopted, and unfortunately, so has our public media here in Wisconsin. If you have any doubt about this I would like to point your attention to five exhibits of evidence from taken from various media sources following last week’s very controversial federal court decision to block federal funding of embryonic stem cell research.

Exhibit A: 8/25/10 By WSJ science reporter David Wahlberg. While first providing some historical background going back to 1998 for the reader, Wahlberg makes no mention whatever that state funding remains non-existent in Wisconsin. One would think that such information would be very relevant for the reader to know in an article dealing with a research funding crisis affecting thousands of Wisconsin citizens who suffer daily from cell-based chronic illnesses, and for Wisconsin future high tech job market.

Exhibit B: 8/3110 In the WSJ Our Opinion entitled, “Don’t stem promising research,” It refers to “this recurring hurdle… to promising medical research.” It then goes on to weigh the likelihood that Congress will intervene to address this obstruction, but nevertheless has absolutely nothing to say about what other funding alternatives Wisconsin itself has at its disposal to help alleviate this episodic federal financial shortfall. --- such as some form of on-going state legislative funding.

Exhibit C: 9/1/10 WSJ Letter to the Editor, entitled “Why does source of funding matter?” The writer notes that “If the National Institutes of Health cannot invest in such research, it falls to the private sector.” How about our own state government?.

Three other letters to the editor this past week shared their views on this federal funding decision. None however mention any state financing alternatives.

Exhibit D: 9/1-7/10 By The CapTimes reporter, Todd Finkemeyers. His article entitled “Stem cells back in the spotlight, A setback for UW research could boost gov candidate Barrett.”

Unlike the science piece in Exhibit A, this was certainly a political piece and beautifully framed so as not violate Wisconsin’s DADT rule. Finkemeyer quotes Democratic candidate, Tom Barrett: “As governor, I will fight for essential stem cell research, and I will make sure scientists and researchers – not politicians – drive our research and technology agenda.” In this statement Barrett has adopted Gov. Doyle’s code words. Translated it means Barrett is telling the Wisconsin voters that he also will not support “state funding of stem cell research” but will support the use of federal dollars alone for Wisconsin’s stem cell research.

If indeed Barrett truly believes that embryonic stem cell research is essential and our best hope for a cure for thousands of Wisconsin citizens with serious chronic diseases, and that such research will be critical in Wisconsin’s economy far into the future, then why doesn’t he want to consider every means possible to ensure the continuity and financial support necessary to make Wisconsin’s stem cell research program truly one of the best in the world? Especially since the tepid federal support continues to threaten the health and safety of millions of citizens who suffer daily from catastrophic diseases?

I believe that this issue --- state stem cell funding ---is too important to continue a day longer to allow the present DADT rule to continue in Wisconsin’s political commons. This wily subterfuge must be seen for what it is. Cover for political leadership that doesn’t have enough trust and faith in the Wisconsin taxpayer to allow them the opportunity at the polls to decide this issue once and for all. Without such an opportunity for the people to be heard, Wisconsin’s stem cell research program will move further and further into mediocrity.

Ask your political candidates now running for office and your present political leaders why they continue not to lead on an issue so important to so many?


Benedict is a patient advocate who tweets at: twitter.com/stemcellbill

Shift to state funding of stem cell research

Wisconsin State Journal - Opinion
Tuesday, September 7, 2010

I am a patient advocate who has been working for state funding of embryonic stem cell research since 2005. With the recent federal court’s action to block federal funding once again, I am struck by how Wisconsin still remains so dependent on such an exclusive funding source in spite of how erratic and unreliable it has become. Led by our governor, Wisconsin’s policy of "leaving stem cell research to the scientists" who depend on ever more increasing fickle federal grants alone does not seem to be working.

It is time to bring the citizens and their legislature into this equation. Our state legislature needs to approve state funding and low interest loans, attached to a “payback” to the taxpayer, if and when, Wisconsin’s stem cell research moves into the clinic. All Wisconsin citizens, but especially those who have family members injured or suffering from chronic diseases, have a right to a more flexible, diverse and stable public funding source for this life-saving research.

Such state funding, if only symbolic during these tough economic times, would be the best evidence possible that Wisconsin is truly committed to stem cell research. Those who are suffering daily from chronic diseases and the scientists who labor in the Wisconsin labs deserve nothing less. We should go one step further. Why doesn’t Wisconsin set a goal of having at least one clinically viable stem cell-based application in to the Food and Drug Administration for clinical trials by 2020?

Stem Cell Article Index

The following stem cell articles appear in this blog:

July 21, 2010 - Declaration of Cooperation Brings Hope
June 23, 2010 - Ownership of human tissue a big issue in curbing health costs Cap Times
April 23, 2010 - Wisconsin’s Annual Stem Cell Symposium Notes
April 2, 2010 - Stem Cell News Alert – 2010 Annual Stem Cell Summit
March 21, 2010 - (Stem Cell) Record’s Request Revealing - WSJ
Feb 5, 2010 - Obama’s Tax Proposal
Oct 10, 2010 - Fail-safe clause of intellectual property law has been ignored to citizens’ detriment. The Cap Times
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Sept 15, 2009 - Stem Cell Awareness Day
July 27, 2009 - New prez affects Wisconsin’s Discovery Institute The Capital Times
May 22, 2009 - Cures for chronic diseases will shake up system The Capital Times
May 9, 2009 - Action steps for chronic disease health advocacy & education associations
May 13, 2009 - If not now, then when? The Capital Times
May 3, 2009 - Protect Wisconsin’s Cutting Edge Science WSJ
April 7, 2009 - Science without ideology: The future of stem cell research
April 3, 2009 - State Funding of stem cell research: A public health care benefit for all citizens
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Jan 4, 2008 - National Association of Social Workers, Wisconsin Chapter Member Request Change in state policy on stem cell research
Oct 19, 2008 - Stem cell research “gold standard” resource in Wisconsin CWAG/Advocate
Oct 2008 - Wisconsin’s stem cell initiative needs strategic plan WSJ
April 28, 2008 - Tier 4 insurance plans are a pretext for what will follow
April 2, 2008 - Let’s follow California’s lead in health care costs The Capital Times
Mar 24, 2008 - A public health care benefit for all Wisconsin’s citizens
Feb 11, 2008 - Governor’s speech misses mark on stem cell innovation WSJ
Oct 3, 2008 - Consider fairness in stem cell research WSJ
Sept 9, 2008 - Demand payback on biotech strategy WSJ
July 21, 2008 - State must protect investment in stem cell research The Capital Times
June 26, 2008 - Legislature: Commit on stem cell research WSJ Your Views
Feb 2008 - The Stem Cell Initiative is the Public’s Business

Dec 6, 2007 - Stem cell debate is needed WSJ
Oct 19, 2007 - Now is time to set up oversight WSJ
Oct 18, 2007 - Make sure taxpayer gets payback from funding stem cell research The Capital Times

Dec 15, 2006 - Cutting edge policies for cutting edge science WSJ
Nov 25, 2006 - Taxpayers need state’s stem cell investment WSJ


My email address is: bergentown@sbcglobal.net

Ownership of human tissue a big issue in curbing health costs

Capital Times - Guest Column

Wisconsin taxpayers and health care groups who are following the recent public interest challenges to UW Wisconsin’s human embryonic stem (ES) cell line patents may not be fully aware of the much larger and more fundamental issues that are at stake.

Should human body parts or tissues be patented and then bought and sold to the highest bidder in the marketplace? Human tissue samples are taken from blood tests, biopsies or during surgeries. As citizens how many of us really know how many tissue samples we have given away or how they were used? Are signed informed consent agreements now used in the donation process legally binding? Lastly, should patients be compensated for allowing another to use her or his human tissue samples?

Answers to these and related questions are rarely simple to grasp or answer and often remain confusing. Therefore, as a retired social worker and regular patient advocate for state funding of stem cell research, I was delighted to read Rebecca Skloot’s award winning book, “The Immortal Life of Henrietta Lacks.” While this book reads like a gripping novel it is non-fiction and contains both easily understood scientific information and a cogent narrative about the way science and our health care system interacts with the public.

The 1980 Byah/Dole (intellectual property) Act supports the present practice of using public tax dollars and our citizens’ raw materials – cells and genes - for scientific innovations and then transforms them into private property and the market place. Such a patent system takes away public control, decision-making and accountability and gives it to scientists whose salaries are paid for by you and me.

The result is that both the state of Wisconsin and individual citizens having to pay twice for their health care: First, to provide the university labs and salaries before a bio miracle invention occurs. And again, when they have to pay for subsequent exorbitantly priced commercial medications. Presently there is no direct monetary or in-kind payback either to the state or to the individual taxpayer or health care consumer.

With respect to giving human sample tissue to doctors, hospitals or universities, Skloot found that indeed only a few of us presently know when and how often we have given away our human tissue or know how it was used.

This is so for at least two reasons: First, written and signed informed consent agreements and National Institute of Health bioethical guidelines are not legally binding or based upon statute. Instead the human tissue donation process is administered and carried out at the local level and in an inconsistent fashion. The selling of tissue samples are presently prohibited or discouraged based largely on the belief that payments or royalties directly to patients would act to exploit the poor and would also unnecessarily complicate and stifle communication between scientists.

Both reasons are false but largely assumed or accepted by the public based upon the perspective of the scientists and private investors alone. In fact increasingly even the research community is beginning to advocate for fewer patents particularly when dealing with biological or natural occurring materials such as stem cells and genes. Many believe that patenting of such natural products versus research tools or processes are the real culprits for delaying research and preventing open communication among their peers.

I believe it is only a short time period before a more complimentary balance between health care research and health care delivery systems become more integrated and mutually supporting. Policy makers will have to become more fully engaged, however, rather than sitting on the sidelines and allowing only scientists and free market investors to manage this increasingly large piece of our public health care dollar. This more aggressive role for our state government will happen only when more and more taxpayers begin to look upstream and carefully consider what is causing ever increasing higher health care prices. I believe reading Rebecca Skloot’s stellar book would greatly facilitate beginning such a public examination.

Finally, I believe citizens will soon also assume a larger role in how their human tissue will be used in the lab or the marketplace and demand a fair price. The present practice of exploiting a citizen’s body parts or tissue for mere profit which is a business involving billions of dollars each year, will be no more.

Benedict is a retired social worker and blogs at danecountyalmanac.blogspot.com.

Declaration of Cooperation Brings Hope

The recent Declaration of Cooperation between California and Wisconsin’s stem cell programs was great news to myself and all who live daily with debilitating diseases.

This latest declaration strengthens the already existing Interstate Alliance on Stem Cell Research in which UW is already a member. The signing for this event was held in California at the annual meeting of the Society for Stem Cell Research. SSCR is an international organization and a world leader in stem cell collaboration.

The California compact with Wisconsin creates a framework for joint funding, and identifies opportunities to further the advancement, promotion and development of stem cell therapies. This is exactly what we all want!

It is reassuring and to Wisconsin’s credit to be reaching out both in sharing its scientific know how while at the same time learning from its peers.

The California stem cell program is a 3 billion dollar public initiative which is using state bonds to fund the construction of stem cell research facilities and to recruit the finest scientists in the world.

By requiring matching funds California has demonstrated that by contributed public dollars via grants and loans it has successfully harnessed and stimulated both public and private stem cell investment without contributing one dime to the state’s deficit.

It also remains a model for both its public accountability and transparency. This is so in part due to its inclusion of patient advocates into its governing structure and an outcome-oriented strategic planning and reporting process like none other.

Benedict is a patient advocate for stem cell research and blogs at: danecountyalmanac.blogspot.com

Stem Cell Symposium Notes

On April 21, 2010 I attended UW-Madison’s Annual Wisconsin Stem Cell Symposium. Called, “The Road to Stem Cell Applications,” these observations have to do with some of the challenges discussed about the road ahead to further stem cell applications.

This meeting was held at the Bio Pharmaceutical Technology Center in Madison, WI.

Some participants expressed concern that the Food & Drug Administration has been too slow in adapting their standards and consultation to better accommodate the fast growing and robust stem cell research field. One speaker feared that too many FDA rules could possibly dampen the researcher’s inquisitive spirit. On a related issue, it was also noted that if standardization sets in too fast, certain otherwise significant secondary discoveries might not be pursued vigorously enough.

A new endpoint --- ending disease --- is the public’s goal for stem cell research. As one speaker said, “from being cool to the real thing.” The tension produced by the public’s desire to raise the bar for stem cell science from disease amelioration to ending diseases has become increasingly palatable. In spite of the delays owing to certain ethical and political policy constraints we have now arrived at the preclinical evaluation stage.

To date only one human embryonic stem cell therapy (Phase One) trial has been approved by the FDA. It is being conducted by the Geron biotech company located in Menlo, California. Geron funded UW’s Dr. Jamie Thomson’s human stem cell line discovery and later received a license from the Wisconsin Alumni Research Foundation to use Thomson’s stem cells.

Geron’s President and Chief Executive Officer, Dr. Thomas B. Okarma spoke at the Symposium and reviewed the history of Geron’s cell-based therapy project for patients with thoracic injuries. Their FDA application was over 22,000 pages and has already cost over forty million dollars. He emphasized how important it is for the greater stem cell community that his company get this trial done right the first time.

Several speakers suggested that continuous cooperation and dialogue among all stem cell stakeholders, including industry, academia and disease advocates, would be required to reduce existing tensions.

It was also noted that before embryonic stem cell therapies can move from the bench to the clinic, extensive education will be required to bring health professionals up to speed about this new and more complex cell-based therapy. The challenge facing scientist today is to move from individual patenting and marketing strategies to greater collaboration among all the disciplines involved. The investors, including taxpayers, are all demanding greater efficiency, effectiveness and accountability from the scientific community.

STEM CELL NEWS ALERT – Coming Soon - 2010 Annual Stem Cell Summit

Attention: All stem cell advocates: Mark your calendar for October 4-6, 2010

The Genetics Policy Institute will hold its annual World Stem Cell Summit in Detroit, Michigan on October 4-6, 2010. This is the number one stem cell conference held each year and stem cell advocates like you will not want to miss it.

I was indeed privileged to attend and cover the 2008 Summit held here in Madison, WI. Click on the year 2008 and you can read: “Consider fairness in stem-cell push.” Your comments will be appreciated.

As advocates once again we will have the opportunity to unite with stem cell scientists, policy makers, funding sources and other stem cell stakeholders from throughout the world.

For more information visit the Genetics Policy Institute website or Google: World Stem Cell Summit. I look forward to seeing you in Detroit.

William R. Benedict

Records Request Revealing

Wisconsin State Journal – Opinion Page
Focus: Sunshine Week

As a patient advocate for state funding of stem cell research and who believes that all such public funding should include a payback provision for the Wisconsin taxpayer, I requested in writing a public document from the Wisconsin Department of Commerce.

This was a low-interest, $1million loan agreement between WDC and Cellular Dynamic International Inc. Upon careful review I found no such public benefit provision of any kind except for the repayment of the loan along with 2 percent interest fees.

While there is strong community consensus in Wisconsin that stem cell research has tremendous potential to reduce suffering and make health care more affordable, there appears at this time little if any awareness that such public support should address the issue of taxpayer payback

California requires if their grantee’s product or patent results in some commercial
profit, some percent of these profits, after costs have been met, will be returned to the taxpayer either in cash or in kind, for example, drug discounts.

Obama's Tax Proposal

Wisconsin taxpayers and health care consumers in Wisconsin may soon be given some relief from ever increasing and exorbitant drug costs. This is so with the President’s recent tax proposal to place a tax on certain “patents and other intangible assets parked in overseas tax heavens by American companies.” This bad news, especially for the pharma industry, immediately follows the now likely demise of the Administration’s health care bill and the quid pro quo agreements between big pharma and Obama Administration.

With the end of health care reform for at least the short term, there exists the distinct possibility at least that along with proposed pharma tax, government Medicare drug negotiations, the importation of much cheaper Canadian drugs, and the closing of off-shore corporate tax havens, are all popular reforms that can now be put back on the table. Presently under the guise of promising increased jobs and a more competitive drug industry, some of the excesses of big pharma may now finally be addressed. Such actions if taken now would also act to significantly, I believe, improve the President’s popularity as we prepare to enter the congressional elections this fall.

If any corporations are in need of reform it is certainly the pharmaceutical industry. In 1980 our government passed the Bayh-Dole Act which gave away the people’s right to the intellectual property created by federally funded research and innovation. Since then intellectual property rights have been given freely, with few enforced constraints, to the inventor and university-based patent custodians who sell licenses to the highest bidders and for the greatest profit.

Presently the Wisconsin taxpayers pay first to create potentially life saving scientific breakthroughs at UW’s life sciences department only to have them snatched up by big pharma which transformed them into the most commercially profitable drug versus choosing one for development with the highest common good or need. Unfortunately in most instances prices are set beyond what many can reasonably pay. This is true not just in third world nations but also for many working Americans right here in Wisconsin.

If there was ever a time for disgruntled Democrats, independents and working class Americans to call or write their congressional representatives and our President, it is now. Tell them that if its now impossible to have universal health care then lets do the next best thing. Reform the financial system, reform individual components of the health care system to the extent possible, including the enforcement provisions of the Bayh-Dole Act, pass the right for the federal government to negotiate Medicare drug costs, pass the importation of cheaper Canadian drugs, and begin to enforce reasonable drug pricing for all.

Benedict is an advocate for state funding of stem cell research and blogs at: danecountyalmanac.blogspot.com.

Fail-safe clause of intellectual property law has been ignored to citizens’ detriment

Capital Times: Saturday, October 10, 2009

Our country’s financial and health care crisis has caused us to pause and reexamine what is still working and what needs to be fixed in our economy. Regardless of our political persuasions, there are few citizens who still doubt that our financial system is broken and in serious need of repair.

For most Americans, it’s no longer a question of is change needed but if we will have the good sense to act decisively now both in terms of meaningful regulation and strict and steady enforcement.

This painful re-examination has already begun and the most important thing we have learned is that many of the policy safeguards designed to prevent the economic collapse already existed but were flagrantly ignored by all three branches of our government.

I would like to share one example: In 1980 Congress past the Bayh-Dole Act. Its purpose was to provide our free market system with greater intellectual property incentives to more effectively develop and commercialize scientific discoveries, particularly in the rapidly emerging biotechnology field.

Moving away from federal ownership of federally supported research, Bayh-Dole shifted the ownership of intellectual property, both the right to patent and license inventions, from the federal government to the scientist-inventor and to universities.

Soon after this bill’s passage, through executive branch action, patent and licensing rights were also extended to large mega corporations.

Recognizing the potential monopolistic pitfalls and huge conflict of interest involved in this potential multi-billion dollar windfall to private enterprise, and the opportunities for abuse, the authors of Bayh-Dole included a fail-safe mechanism called “march-in” rights

This provision allowed the executive branch and its federal departments who fund public and private research to intervene and remove an exclusive license when the holder refused to bring the invention or product to market in a timely fashion or abused its commercialization through exorbitant pricing.

Bayh-Dole is a classic example of a federal act with tremendous potential for both good and bad that has been ignored for nearly 30 years, leaving it without proper congressional oversight, executive and judicial enforcement.

Congress has done absolutely nothing to significantly reform Bayh-Dole in a manner that would make the government’s march-in rights provision more clear and actionable. To date the executive branch has not once intervened, even in the face of ever-higher drug prices by large pharma, to enforce reasonable price setting. Similarly the federal court system has blatantly ignored the clear legislative intent of this act to provide both consumer access to new innovations and fair pricing.

The history of the Bayh-Dole Act is just one of many instances where well intended laws were passed but through time and neglect have been ignored and rarely if ever enforced. The result of such inaction has also been a major contributor to our country’s present health care crisis. This is largely due to public servants who are forever pandering to special interests over our common welfare.

Benedict is a retired social worker and resides in Madison. He blogs at danecountyalmanac.blogspot.com

Stem Cell Awareness Day

Stem Cell Awareness Day is September 23rd. The idea of celebrating SCAD is to inform the public about stem cell science and to generate grass roots support for research in this field. The future of stem cell research holds great promise for curing a variety of chronic diseases such as diabetes, heart, arthritis, and Alzheimer, Parkinson’s, cancer and neurological.

Scientists are presently seeking ways to grow stem cells into a wide range of human cells, tissues and organs. Stem cells may produce revolutionary changes in regenerative medicine seen only rarely in human history.

My family, like most others, has experienced the daily heart aches and challenges caused by one or more chronic diseases. For the past four years I have dedicated much of my time to learning about recent genetic and stem cell medical breakthroughs.

My decision to become a patient advocate for stem cell research funding and regenerative medicine is both personal and public. I want to help bring an end to the generational cycle of suffering inflicted on my family now and in the future and publicly, because the treatment and care of chronic diseases cost the taxpayers billions and billions of dollars each year.

Last year America spent $2.3 trillion on health care costs; 75% of this figure was due to chronic (presently incurable) illnesses. Northing lowers medical costs like curing a disease. This money could better be spent on education and more cell-based science.

I am convinced that our life science and technology has now reached the point of soon ridding us of our most debilitating and costly diseases. I am also strongly convinced that most citizens, if given the same time and opportunity as I have had to study this issue, will also reach the same conclusion.

Won’t you join my family and me and celebrate Stem Cell Awareness Day on Thursday, September 23rd. For ideas on how you or your health care organization can advocate for stem cell funding, see Benedict’s blog, Danecountyalmanac/Stem cell funding reform/Action steps for chronic disease advocacy and education organizations.

Bayh-Dole Act in need of reform

Our country’s financial crisis has caused us to pause and reexamine what is still working and what needs to be fixed in our economy. Regardless of our political persuasions, there are few citizens who still doubt that our financial system is broken and in serious need of repair.

For most Americans, it’s no longer a question of if change is needed but if we will have the good sense to act decisively now both in terms of meaningful regulation and strict and steady enforcement.

This painful reexamination has already begun and the most important thing we have learned is that many of the policy safeguards designed to prevent the economic collapse already existed but were flagrantly ignored by all three branches of our government.

I would like to share one example: In 1980 Congress passed the Bayh-Dole Act. Its purpose was to provide our free market system with greater intellectual property incentives to more effectively develop and commercialize scientific discoveries, particularly in the rapidly emerging biotechnology field.

Moving away from federal ownership of federally supported research, Bayh-Dole shifted the ownership of intellectual property, both the right to patent and license inventions, from the federal government to the scientist-inventor and to universities.

Soon after this bill’s passage, through executive branch action, patent and licensing rights were also extended to large mega corporations as well. Recognizing the potential monopolistic pitfalls and huge conflict of interest involved in this potential multi-billion dollar windfall to private enterprise, and the opportunities for abuse, the authors of Bayh-Dole included a fail-safe mechanism called “march-in” rights

This provision allowed the executive branch and its federal departments who fund private research to intervene and remove an exclusive license when the holder refused to bring the invention or product to market in a timely fashion or abused its commercialization through exorbitant pricing.

Bayh-Dole is a classic example of a federal act with tremendous potential for both good and bad that has been ignored for nearly 30 years, leaving it without proper congressional oversight, executive and judicial enforcement.

Congress has done absolutely nothing to significantly reform Bayh-Dole in a manner that would make the government’s march-in rights provision more clear and actionable. To date the executive branch has not once intervened, even in the face of ever higher drug prices by large pharma, to enforce reasonable price setting. Similarly the federal court system has blatantly ignored the clear legislative intent of this act to provide both consumer access to new innovations and fair pricing.

I believe the history of the Bayh-Dole Act is just one of many instances where well intended laws were passed but through time and neglect have been ignored and rarely if ever enforced. The result of such inaction has been a major contributor to our country’s present health care crisis. This is largely due to public servants who are forever pandering to special interests over our common welfare.