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STEM CELL POLICY SUMMIT: SUSTAINING THE MANDATE FOR CURES

SUNDAY JUNE 12, 2005

STEVE'S JOURNAL



On Sunday morning Dr. James Willerson talked to us about stem cell research in laboratory animals.
He is convinced that adult stem cells can be quite effective in repairing hearts that have had
muscle failure. He spent a considerable amount of time teaming with Brazilian doctors who had
patients with severe heart attacks. He described that the body has stem cells throughout. After a
heart attack, the body's stem cells cannot send enough stem cells to automatically repair the heart
damage. He did research where bone marrow stem cells were injected into the artery where the heart
attack occurred. There was improvement over time in the blood flow of the patients. They have
treated over 40 patients with no negative effects. After two months there was a measurable
improvement of blood flow. Patient's physical activities improved. German doctors were working on
the same type of problems and there was a randomized study which showed great improvement in all
study groups, He is currently using different types of stem cells to provide the most effective
cells to regenerate the heart muscle. He is coordinating with doctors in the United States and in
Europe with similar techniques to regenerate the heart. They are looking for the stem cells that
will be universally applicable to as many patients as possible.



Dr. Robert Schwartz is the Associate Director of the Institute of Bioscience and Technology at Texas
A&M University in Houston. He told us he was so pleased and honored to be a part of this conference.
He has done numerous studies on heart function with mice. He too is interested in using stem cells
for heart repair. He discussed how stem cells transform into cells identical to heart cells within
ten days of injection. Note that this is done with existing cells of the mouse patient. He was able
to identify when the non-differentiated cells became differentiated. That is he could identify when
those cells decide to become heart cells. He discussed at length how, with genetic identification,
how the process works. The cells put out a homing signal which tells cells where to go to do their
repair. This is still being done in mice in the lasboratory. He said we need to give SCNT a chance
to help answer the many questions scientists still have.



Dr. Matthew Nesbit is an assistant professor in the School of communication at the Ohio State
University. He told us about public perception of stem cell research. He discussed people's frame of
mind and how people interpret different things. Most people frame issues and media is often
instrumental in establishing those frames. When you frame stem cell research in technical terms, you
don't reach a lot of the public. Terms like Frankenstein or Brave New World and the Holocaust
automatically polarizes the audience. Personalizing the issue by those who talk about stem cell
research is a way for people to identify with stem cell research. Staying on message is critical to
convey the information. Survey wording can obviously direct what the results will be. He presented
graphs of media infiltration on public perception of stem cell interest. Media strategy for stem
cell positive impact is critical. When people equalize abortion with stem cell research, they set
their frame on the concept regardless of the facts presented. Most of the public is generally
unaware about any laws on the books regarding limitations on stem cell research. Religion mitigates
the understanding of scientific research of people. The understanding of stem cell research is
driven by media presentation of the issue. The more people hear about the issue, they tend to be
more likely to support it. People are hearing more about the issue in surveys over the last year.



Sandy Goodman is Chair of the Public Policy and Advocacy Committee of Nebraskans for Research. Sandy
discussed with us about opposition groups. In 2003 a group called the Nebraska Coalition for Ethical
Research (An Opposition Group) David Prentice, PhD claimed to be a stem cell expert and Sandy found
out that he did no scientific work. He has been an advisor to Senator Brownback. In his
investigation of these groups, most have a religious motivation. He is a long proponent of "All we
need is adult stem cell research" Sandy tried to contact the scientists who David Prentice quoted.
They all said we should be doing both adult stem cell research and embryonic stem cell research. Mr.
Prentice IS NOT A SCIENTIST.



Marco Perduca is from Florence, Italy and is a member of the board of Directors of the Luca Coscioni
Association.  (www. lucacoscioni. it) He talked to us about the Catholic Church in Italy. He
discussed the legal issue in Italy where IVF law for people allows only three embryos to be set
aside for implantation in one woman only. He told us about the vote going on in Italy to allow more
embryos to be created. The Catholic church has told people to NOT go to the poles so there will not
be a quorum on the issue. As of this morning only 4% of voters have gone to the poles. Marco's group
is trying to set up an organization like Bernie has set up in the United States. He said this is the
Civil Rights movement of the 21st century. This is a case of freedom and democracy.



Dr. Robert Buckman lives in Toronto, Canada and is a medical oncologist at the Princess Margaret
Hospital there. He told us about the concept of God as a creator and the one who sets our destiny.
He talked about visions people can have. Like Joan of Arc who had a vision of the Archangel Michael
who told her she had to attack the English. Scientists in the 1930's found out there was certain
locations in the brain that contained visions or psychic experiences. He discussed temporal lobe
epilepsy. Scientists found that people have different sensitivities in the temporal lobes. Those who
have more sensitive lobes are more likely to have visionary experiences. When an individual thinks
he has been spoken to by God, it comes through the temporal lobe. Once you lock the idea that God
has spoke to you about an issue, the resistance of that individual to anything they perceive as
against God, you have a huge problem to convince them otherwise. To promote stem cell research, we
have to be aware of this concept and how difficult it will be to change



R. Alta Charo is the Elisabeth S. Wilson Bascom Professor of Law and Bioethics at the University of
Wisconsin at Madison. She told us about regulation and about the FDA. The Nation Academy of Science
set up a committee to establish guidelines for ethical research for stem cell research. This was
done to help calm the fears of the public concern that this is an unregulated field. You can look at
the recommendations at www. nas. edu . The guidelines specify the one cannot be paid for donating
stem cell materials. Trials must have experiments in animals. There is a spectrum of experiments
that must be done between animals and humans and determine what kind of regulations must be
effective in laboratories. This is a moving target. The type of experimentation changes rapidly as
new experiments are devised. Who is going to set up the regulations? Can NAS do that? Yes they can
and they are ready, but they cannot act unless advocates tell NAS that they want it to happen. This
way they can set up a template for states to use for ethical regulation of stem cell research. The
FDA is another story. They regulate tissue transfer. They are involved with all the complicated
rules on HIPPA regulations and privacy regulations. In approving of human trials, the FDA is trying
to decide if it is safe enough for this. How do you prove to the FDA that your tissues are
differentiated so tumors and foreign materials are not in the tissue. The FDA is being effected by
White House political issues. The FDA could be told to slow down approval of stem cell therapies.
The FDA used fast track methods in the 1990's and now the White House may put on the brakes on the
process. We do not need these trials to move too fast, because we cannot afford failure in the early
trials.



John Robertson holds the Vinson & Elkins Chair at the University of Texas School of Law at Austin.
John thanked Bernie for his commitment to the support of stem cell research. State laws are going to
be critical on the impact of research. In Missouri you can do stem cell research, but not with
embryos. This topic obviously polarizes the public. Some say it is wrong to create embryos for
research, but you can use embryos from IVF clinics. Being able to use SCNT will be critical for our
medical models. If you cannot create embryos for research, you will not be able to create cells for
SCNT. Pennsylvania has a law that was passed to not allow embryo research. The folks at TAMR made a
Herculean effort and defeated a very restrictive bill in the Texas legislature. Human Life
Protection laws are now in 30 states. These laws protect embryos at conception. He went through the
laws on the books from several states. Some are not clear if you can use IVF embryos if they are
being discarded. Focus on the Family is getting involved on fighting the potential use of discarded
embryos. Will Federal monies be available for stem cell therapy from embryonic stem cells? Could a
parent who refuses to allow a child stem cells to cure diabetes be charged with child abuse? We
don't know yet.



Dr. Laurie Zoloth is Director of the Center for Bioethics at Northwestern University. She has been a
mentor to Bernie Siegel in his journey on stem cell advocacy. She said she believes in God. She
believes deeply in the research in stem cell research. Science is now a public act. It used to be
done exclusively done in the laboratories. The scientists have been drug into the public debate
given the political climate in the United States. As public funding has been minimized, research
moves into the private funding sector. Market sees research and science as a good bet. Most of the
controversial issues have gone to the voting booth instead of through scientific discourse.
Congratulations to California for bold move to go forward on funding the stem cell research. The
economic story will shift as a huge debt when it comes to public health. The President wants
everyone to be responsible for their own health and their own retirement. Why did science become so
political? The public discourse is asking more and more about disease. We are Americans and we
always ask the moral question of who is in or out. In this case it is true with health care. Who
gets it and who doesn't? What are we really debating about stem cell research? Are we messing with
nature by doing research on embryos? How can we do it ethically. Can stem cell research be used by
evil people? Of course that could happen, but it does not mean we should not do it. Will there be
mistakes in doing the research? Of course there will, but we will learn by those mistakes. All of
the claims above have validity. The trouble is that the invalid portions can be addressed. Most all
of the negative claims are faith based claims. We are going to have a hard time in getting an
agreement on the moral status of the embryo due to the closely held beliefs of different people.
Healing is at the core of most religions. That is what stem cells can do.



Peter Ludwig is a lawyer on intellectual property issues. He has a long resume in intellectual
property issues. He told us that once you thought you knew the issues in stem cell research, the
issues change because science is continually changing. Patents are very important because this is
the only way to get therapies to the patients. Someone has to include the business side of this
issue. What are the tests for patentability. The invention has to be new, it has to be useful, and
is it not obvious? The patent gives you the right to exclude others from using it. Patents can be a
bargaining chip. There have been 2000 stem cell patent applications. Methods for identifying and
selecting stem cells have been patented. In US law you cannot get patents on human beings. N the
past if the government paid for research and inventions, they would have the patents. They would
give a non exclusive licenses to universities for discovered processes. This did not work well at
all in private business. A law in 1984 gave universities the right to grant exclusive licenses.
There are established regulations to protect procedures. Going for a patent is an expensive
proposition. You have two years to apply. The government has exclusive rights forever on the
invention. The license has to be given to companies in the United States. What about state funding?
Most of the bills in state legislatures are silent on the intellectual property and inventions
thereof. The regulations vary widely from the few states that have addressed the ownership issue.



Dr. Paul Fehlner is a principal of Darby & Darby, New York, New York. Intellectual property rights
are very important to help science to progress. If stem cell opponents don't succeed in defeating
research on the political side, they could do it on the legal side in courts or even in intellectual
property rights. Patents have the potential to support or block research. If a license is granted to
a company, they can stifle continued research in the area possibly as a patent infringement. The
businessman wants to make a profit, and if can't do it on research, he won't invest. The goal of the
patent office is to grant patents within three years of the application. There is sometimes a Non
Aggression pact by universities who can by tacit agreement not to sue other universities as some
products are being developed. This helps reduce impediments when shared procedures are needed. A
suit very rarely stops the research and it is very costly to fight. Paul discussed various options
laboratories could proceed to do research to be allowed to do research on existing technologies or
drugs.



Bill Caldwell is the new Chairman of the Board, President and Chief Scientific Officer of Advanced
Cell Technology. He told us that the two presentations just before his sounded like the attorney's
full employment act. It takes a tremendous amount of money to get a technology from the laboratory
to the bedside. He has seen a lot in the business world in several technologies. He is now coming
into the stem cell industry. And the industry is very new. The industry has been totally
undercapitalized. Venture capitalists are unique. They provide seed money and are willing to take
significant risks. But they are not willing to take political risks. He feels the technology that is
being developed in South Korea is a tragedy for American research. The political atmosphere is the
primary reason for this delay. Scientists have not been able to move faster due to
undercapitalization. Decision makers in the large companies are hesitant to move full force until
the political playing field is more positively established. He does not see the playing field
changing for three more years with the current administration. California is further advanced, but
there are still political questions which could stall development. Legislation in some states could
hurt the business climate for venture capitalists. There is a real minefield in intellectual
property rights. We need viable companies that can be properly funded to have products to be
developed for therapies for patients. Companies have to be focused on their products in this
industry. We are falling behind in this technology. Other countries around the world are moving
forward. In commercialization we need a partnership with the private sector and the public sector to
advance the technology. It need to come early and move quickly. We need laws that will support that
development and have funding with it. "We don't know what we don't know." At the state level we need
to leave the field as wide open as we can.



Beckie McCleery is the immediate past president and Co Founder of Texans fro Medical Research
(TAMR.) Beckie thanked Bernie for putting together the conference and introduced each of the
panelists below. Beckie told us about organizing on the local level and the importance for us to
show up with patients and loved ones in the fight for cures. We can respectfully resist the
opponents of ethical embryonic stem cell research. We need to have a consistent vocabulary to
reframe the argument for stem cell research. We want to talk about the "How Tos". We will bring our
passion and our skills to find cures. This is the Civil Rights Movement in the

21st century.



Judy Haley is the President and Co Founder of Texans fro Medical Research (TAMR.) their web site is
at http://www.txamr.org/ Judy told us how she got into stem cell advocacy. Her life changed
dramatically when her 10 year old was diagnosed with Type1 Diabetes. Six months later her 12 year
old son was diagnosed with Type 1 Diabetes. She got involved with the Juvenile Diabetes Research
Foundation. She saw the bad legislation coming across the radar in the Texas legislature. She then
formed Texans for the Advancement for Medical Research (TAMR). They had a limited hearing in front
of a legislative committee. They worked hard to make sure that scientists would not be arrested for
doing stem cell research. They also had to fight against people getting arrested if they got stem
cell therapies outside the state of Texas. They are Advocates for Life. They have one incredible
board of directors made up scientists, lawyers, researchers, and businessmen. TAMR is a huge
supporter of the researchers who are going to find cures. She discussed all the stakeholders
affected by stem cell research and TAMR has involved them. They are building a grassroots advocacy
coalition. The have made numerous presentations to legislators and the legislators' constituencies.
It is a huge task. They have used the resources of numerous groups, many at the Texas Medical
Center. State agencies cannot lobby the legislature. They had many legislators go on record in
support of stem cell research and SCNT. This is absolutely critical. They had an Advocacy Day at the
State Legislature and joined with the Parkinson's Action Network. Their message was to the
legislators should not vote for anything that would put a barrier in the way of research. Chapter 11
of Senator Hatch's book was in every packet. Make sure you have input to editorials and Op-Ed pieces
in favor of stem cell research. You have someone at the legislature at all times. Have a diverse and
distinguished board. You have to have grass roots AND grass tops. Incorporate celebrities when you
can. They are going with seminars across the state explaining stem cell research. Many are surprised
at the contents of the presentations. Thank your legislators and make sure the constituencies
understand why the legislators support the research. Never, never, never, never give up. Hand in
hand we can.



Don Reed is currently the President of Californians for Cures. He told us about the rat he held that
had been paralyzed and with stem cell implants was able to walk. He told us Roman's accident which
paralyzed his legs. He discussed the frustration in trying to get funds for research. Learn to be
brief when you talk to talk with legislators. There is so much that needs to be done in advocacy for
stem cell research. Take a task and do it the best you can. He bragged that Bernie Siegel is one
incredible guy and told don a year ago in the fight for stem cell research that "You ain't seen
nothing yet". And truly marvelous things are happening.



Idelle Datlof is the Founder and Executive Director of the Stem Cell Action Network (SCAN). Idelle
told us that "Stem Cells Are the Key" Two years ago she formed the Stem Cell Action Network. She
heard about regenerative medicine. Then she heard President Bush's speech limiting funding for stem
cell research. She was livid that someone would put limits on healing people. She came up with the
idea of "Portraits of Hope" Idelle set up SCAN to get the image of those who have diseases are real
people you know. There are millions of people with millions of stories. One of SCAN's purposes is to
build a network of grassroots individuals who will become activists in their communities. She talked
about Raymond Barglow and how he convinced the SCAN group to have a conference in Berkeley in the
summer of 2004. She talked about how incredulous the idea was and how it came together. We have 150
portraits on the www. stemcellaction. org site. We now have started the reality snapshots or "one
day in the life of _____" She mentioned the Yahoo web site that Steve Meyer has put together that
has worldwide publications on stem cell research. The site is
http://health.groups.yahoo.com/group/StemCellInformation/. We are the poor patients who are going to
have to take up the banner in the fight for stem cell research. There is an incredible amount of
talent in the stem cell advocacy groups. We need to capitalize on that talent.



Joe Riggs is the Founder of the Student Society for Stem Cell Research (SSSCR). There are SSSCR
members in 15 countries, 25 states and 50 institutions. Joe thanked Baylor Medical Center, TAMR,
CAMR, GPI, SCAN and others who have helped the SSSCR. We as the future medical research community
feel that very little that is impossible to achieve numerous cures in our lifetime. They have
prepared numerous resource documents for those who support stem cell research. His goal is to create
chapters at universities and colleges around the world. Their web site is at http://www.ssscr.org/
Joe feels that his schooling is important, but so is handing out brochures in the support of stem
cell research. Joe showed us a news spot that showed the students at the University of South Florida
saluting Christopher Reeve.



Sabrina Cohen is the Associate Director of the Genetics Policy Institute (GPI). Sabrina told us how
she was in a car crash and was paralyzed from her neck down. She now goes to schools talking about
wearing their seat belts and not speeding. She told us how she met Bernie Siegel and how she decided
to work with Bernie at the Genetics Policy Institute. She has made numerous talks at local
communities, hearings and many other locations. She stressed the necessity to become educated in
stem cell research. It is extremely important to raise funds to educate elected officials and their
constituencies about stem cell research. You could do that by having a party at your house and ask
folks to donate $50 each for the cause of stem cell research. She wants to work on a campaign for
Public Service Announcements on stem cell research. She thanked all who attended the conference. .



Sandy Goodman formed Advocacy Committee of Nebraskans for Research. He just wanted to share with us
a money idea. They have raised $200,000 over the last 5 years. Pick someone in your community who is
loved. You honor that person at a reception where people can make donations. Ask for donations and
you never know what might be given. Check with Sandy at smg@... for details.



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It is now 3:30 and the closure is here and I have to go catch a plane. This has truly been a
mountaintop experience for me I hope you learned something from my journal and you get a chance to
go to the conference next year.





Nina

"Circumstances determine our lives, but we shape

our lives by what we make of our circumstances."






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