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THE ADULT STEM CELL "TREATMENT" LIST The Coalition for the Advancement of Medical Research (CAMR) is the voice and the leadership of the patient advocacy movement. Under the leadership of people like Tim Leshan, Larry Soler, Dan Perry and Sean Tipton, CAMR has led the fight for public funding of embryonic stem cell research since it began. As the battle to pass the Stem Cell Research Enhancement Act (Castle/DeGette, formerly H.R. 810) begins next month, they will be our champions again. CAMR's nearly one hundred member organizations are a cross-section of America's medical, scientific, patient and disease advocacy groups: with membership ranging from the mighty-groups like the American Medical Association (AMA)-- to the miniscule, like Californians for Cures, the group I co-chair with Karen Miner. I have a suggestion. We all know the Stem Cell Research Enhancement Act will soon be reconsidered, perhaps as early as the second week in January. Everyone is working hard to be ready. I would respectfully request that every individual member group of CAMR-and the board of CAMR itself-consider a public stand on the most influential tool of the opposition: the infamous list of alleged adult stem cell treatments and cures, designed by Dr. David Prentice. This is the famous list, so often cited by opponents of embryonic stem cell research. Sometimes it is Prentice talking about it himself, as in a recent debate at Harvard: ".Prentice said that there have been 58 medical conditions in which the therapeutic benefit of adult stem cell treatment has been established, while no clinical benefits have been achieved so far as a result of embryonic stem cell research."-Harvard Gazette Archives, April 21, 2005 Almost every Congressman who attacks the research will reference the list. Examples: "In 2005, patients were being treated for 58 different conditions-either in clinical trials or in practice-with adult stem cells while research in embryonic stem cells has yielded none. In 2006, the number of conditions being treated with adult or blood stem cells has increased to 72, while the number being treated with embryonic stem cells remains at zero."-Rep. Zach Wamp, The Chattanoogan, July 21, 2006 "Washington-The Senate is wasting time on alternatives to adult stem cell research, three House members said today. Congressmen Mike Pence (IN-06), Dave Weldon (FL-15), and Joe Pitts (PA-16) issued the following statement. ". To date, embryonic stem cell research has not produced a single medical treatment, where ethical, adult stem cell research has produced some 58 medical miracles." -(newsrelease, July 13, 2005) Did you notice the name Dave Weldon in there? Weldon is the co-author of the Human Cloning Prohibition Act, (Senate Bill 658, House Resolution 2505, Weldon/Brownback) which passed the House of Representatives three times: 2001, 2003, and 2005-and which advocates ten year jail sentences and million dollar fines for anyone practicing Somatic Cell Nuclear Transfer (SCNT). David Prentice is the scientist-advisor for both Weldon and Brownback. Prentice is employed by the Family Research Council, called the most powerful lobbying arm of the religious right. (It reportedly has a staff of 120, and a budget of ten million.) Prentice is the hired gun scientist whose work is used to justify attempts to ban research, and also jail scientists, patients and parents; if the Brownback law passed, and I took my paralyzed son to England, (where SCNT is supported by the government), and had treatment there, on our return home we could both be arrested. Prentice himself is now carefully qualifying his statements: saying that his group, quote: "has not claimed that current adult-stem-cell treatments are "cures" or "generally available" at this time. We have consistently said these are examples where patients have been helped by adult/cord-blood stem cells and shown some benefit and improvement." (from National Review on Line, interview July 19, 2006) He is being more cautious, I suspect, because SCIENCE magazine ran an article in which three scientists dissected the accuracy of his list. (July 13, 2006, Science DOL: 10. 1126/ science.1129987) As the Washington Post reported: ".Prentice has repeatedly claimed that adult stem cells.have at least as much medical potential as embryonic stem cells. He often carries a binder filled with references to scientific papers that he says prove the value of adult stem cells as treatments for at least 65 diseases. ".three researchers went through Prentice's footnoted documentation and concluded that most of his examples are wrong. "Prentice not only misrepresents existing adult stem cell treatments but also frequently distorts the nature and content of the references he cites," wrote Shane Smith of the Children's Neurobiological Solutions Foundation in Santa Barbara, Calif; William B. Neaves of the Stowers Institute for Medical Research in Kansas City, MO.; and Steven Teitlebaum of Washington University in St. Louis. ".All told, the scientists concluded, there are only nine diseases that have been proved to respond to treatment with adult stem cells. "By promoting the falsehood that adult stem cell treatments are already in general use for 65 diseases and injuries, Prentice and those who repeat his claims mislead laypeople and cruelly deceive patients," the scientists wrote." -Washington Post, Rick Weiss, July 15, 2006. Now if Prentice was just a cheerleader/lobbyist for adult stem cell research, that is one thing. He could be dismissed as no more damaging than an oil lobbyist, for instance. But oil lobbyists do not generally try to jail environmentalists-and Dr. David Prentice provides the "scientific" underpinning for legislation to jail stem cell researchers. If Dr. Prentice gets his way, advanced embryonic stem cell research will be illegal, and scientists, doctors, patients and parents will be sent to jail. To me, Prentice is like a tobacco scientist, one of those white-coat-wearing paid experts who for years supported tobacco sales by saying that reports of cancer were "controversial", giving the appearance that there was a division of opinion inside the scientific community, instead of the reality, which was otherwise. Scientists understood that smoking could cause cancer, but still a few (paid) white-coated pontificators would stroke their chins and say, "Controversial. controversial." This is a very similar situation. On the one side, we have virtually the entire scientific community, all agreeing the research should go forward-and on the other side we have the religious right-backed up by David Prentice. Do I exaggerate? Look at the long membership list of CAMR, which supports the advancement of both adult and embryonic stem cell research, as is only right and proper. These are groups like the American Medical Association, the Association of American Universities, nearly a hundred more. The National Institutes of Health support embryonic stem cell research, as does the National Academy of Sciences, and 40 Nobel laureates, on and on and on. What major educational, medical, and scientific groups can the anti-researchers offer? To the best of my knowledge, not one. I almost feel sorry for Dr. Prentice, standing alone (except for religious and political support, of which he has plenty-but then I remember my paralyzed son, Roman, and what he goes through every day. To understand how dangerous Prentice is, read the transcripts of the debate about HR 810 (the Stem Cell Research Enhancement Act, Castle/DeGette)-virtually every opponent of the research mentions the Prentice list as unchallengeable fact. Any time you hear an opponent of our research say, "there are 70 (or 58, or 65, or 72-the number varies) adult stem cell cures or treatments"-that is the Prentice list. And nobody fights back! They all talk about the possibilities and promise of embryonic stem cell research-but nobody says, hey, that list is pure propaganda! This time around, our legislators must be ready to answer the list. We need to be sure every one of them has information to counter the Prentice propaganda. This is the single most damaging weapon the other side possesses. If you don't know how empty it is-it can sounds terrific. Only when held very closely to the light, does the falsity begin to show. Spinal Cord Injury? Folks, if there is a cure for spinal cord injury paralysis out there, please tell me. I'll mortgage the house and Roman and I will get on the plane. But it has to be real. It is definitely not the one mentioned in the Prentice list, the olfactory sheathing glia (OEG) treatment in Portugal. Susan Fajt had that operation, paying "$30,000 for surgery performed by Dr. Carlos Lima, a neurologist. in Lisbon, Portugal," according to Wired News, Kristen Philipkoski, June 03, 2005. When I talked to Susan, about a year ago, she was still angry about being cited as a success for adult stem cells. As recounted in Wired News: ". as (Rep. Dave) Weldon tried to persuade members of the House of Representatives that embryonic stem cell research was not only unethical but unnecessary, he held up a poster-sized image of himself standing by Fajt, who is clutching a walker in the photo. ".This poster is of a young lady who was paralyzed for years and had an adult stem-cell transplant," Weldon said that day, "She is able to stand up." The clear implication is that adult stem cells healed her. Is that correct? Not according to Susan, who reported "marginal benefits from the procedure-some increased sensation in her lower extremities. I am still paralyzed," she said. You put enough braces on anybody paralyzed, and they can stand too. The braces my son has worn for exercise can quite literally stand up by themselves, without Roman in them. Inside the braces, which go up to his chest, Roman can stand too. But he is still paralyzed. There is even some doubt that adult stem cells had anything to do with the very minor improvements reported from this operation-- increased skin sensation. Dr. Wise Young: "To imply that this therapy is a 'miracle' and to suggest that this therapy is producing significant functional recovery is wrong," in an earlier article by Philipkoski. Parkinson's? The patient cited is Dennis Turner. Mr. Turner had a double operation, combining a legitimate attempt at adult stem cell transplantation by a respected doctor, Michel Levesque-with a DBS (Deep Brain Stimulation) surgery. The DBS procedure, according to Parkinson's advocate Rayilyn Brown, may have been responsible for the five years of symptom-free living Mr. Turner enjoyed. But according to Ms. Brown, a telephone conversation on 4-24-06 revealed that the Parkinson's has returned. He is not healed. Even the doctor who performed the operation, Dr.Michel Levesque at Cedars-Sinai Medical Center, "said that though his solitary patient has improved. (he) has not proven it is an effective treatment."-the Boston Globe, November 1, 2004. The last I heard, that project was not continuing-yet Parkinson's is on the list of diseases and injuries for which an adult stem cell treatment supposedly exists, or is in clinical trial. To me, Dr. Prentice is the anti-science scientist, opposing the freedom of inquiry which is the bedrock of research. But he can definitely "talk the talk", with endless footnotes and big words. If you only read his information you could believe that adult stem cells are all we need. The list must not go unchallenged. When the opposition makes any statement like , :We don't need embryonic stem cell research, because adult stem cells are proven treatments for 72 diseases and disabilities"-- our folks must have the ammunition to reply. It is my hope that CAMR-and every organization within the Coalition for the Advancement of Medical Research-- will take a position on the Prentice list. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn