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# 402 Friday, December 28, 2007 - WHEELCHAIR WARRIOR CHALLENGES PRESIDENTIAL CONTENDER First, the dynamite. "We at Wired Science think that people suffering from these 73 conditions would love to know where they can receive these cord blood and adult stem-cell treatments. So to (Presidential contender Fred) Thompson, we issue a challenge: Provide a list of locations where Americans can receive these treatments."-Steven Edwards. --(Wired Science Issues Stem-Cell Challenge to Fred Thompson, by Steven Edwards, November 26, 2007) A little background: wheelchair warrior Steven Edwards of South Carolina is a friend of research from way back. Computer-savvy from the git-go, he helped spread the message about the Roman Reed Spinal Cord Injury Research Act of 1999. I think he was about 19 years old at the time, which was a shock to me, that he could navigate the electronic world so effortlessly. After Roman's law was signed, I lost track of him for a while. We went different ways, only occasionally bumping into each other at events like Unite2Fight Paralysis (where I received a second surprise: that he has red hair bright enough to start fires with). He became a writer for WIRED, the famous internet organization, and routinely produces quality work. Sometimes we agreed, sometimes we disagreed. His long term goals include lobbying for increased NIH funding-anybody got any tips, pointers, or contacts for him? But nothing prepared me for what came next. Remember the famous list of 73 adult stem cell "treatments"? Invented by Family Research Council employee Dr. David Prentice, this list has been used as ammunition by every Religious Right congressman and Senator who ever wanted to attack embryonic stem cell research. (To understand the huge impact of the Prentice list, the Congressional debate on the Stem Cell Research Enhancement Act is instructive: the list is mentioned, I believe, by every opponent of the research.) That is a problem, because the list is bogus. It is what I call a "lawyer's lie", where the facts themselves may not be inaccurate, but the planned impact is utterly false. A lawyer could probably find ways to talk about the list with a straight face-because technically a treatment is undoubtedly available for every disease on earth- you could give aspirin for cancer and call it a treatment. But the implication? To imply there is no need for embryonic stem cells because adult stem cells are all we need-when one hundred million Americans suffer chronic disease and disabilities? Among the conditions which the Prentice list claims as having an adult stem cell treatment is spinal cord injury paralysis: which affects my son. Now, if there is a cure for paralysis, I am reasonably certain I would know about it. There isn't one; that is why we fight, so the research can go forward. As far as the alleged "treatments", I have heard all the babble about OEG's, (Olfactory Ensheathing Glia) etc.-and don't buy it-because I have talked to several people who have actually had the operation. None are doing well enough for me to recommend a similar procedure for my son. That is my standard; would I want my son to have the treatment? One person says he can now feel skin sensation on his elbow, feel the shirt sliding on when he is being dressed in the morning. But he is still paralyzed. I would not send my worst enemy to have his or her spine opened up for the insertion of cells from deep inside their nose, (where OEG's come from) not only because I see no real evidence that it helps, but also because things can get worse. Imagine being paralyzed, and then having a treatment-- which resulted in continual pain for the rest of your life-paralysis AND pain? I have no problem with adult stem cells (or OEG's: there is disagreement if adult stem cells are even present in the OEG's); science only goes forward when freedom of research is allowed. I support full stem cell research-adult, embryonic, nuclear transfer, and the new reprogramming methods-but none at the exclusion of the others. I won't accept a substitute for an entire field of science, and that, unfortunately, is what the opposition to ESCR suggest. For them, it is adult stem cells and nothing else. So when Republican presidential contender Fred Thompson made the following statement, (about the iPS experiments) I just shook my head in frustration. "In yet another breakthrough for adult cell research, scientists have made normal human skin cells take on the relevant properties of embryonic stem cells. That is in addition to 73 breakthroughs for adult and cord blood research. just one more indication that our current policy in relying only on adult cells is working." (emphasis added). Politely, but publicly, Steven Edwards stepped up to the plate. First he inquired if the 73 breakthroughs mentioned by candidate Thompson did in fact refer to the Prentice List. When told that it was, he wrote the following: "We at Wired Science think that people suffering from these 73 conditions would love to know where they can receive these cord blood and adult stem-cell treatments. So to (Presidential contender Fred) Thompson, we issue a challenge: Provide a list of locations where Americans can receive these treatments." (emphasis added-dr) Brilliant. If there are all these treatments available, where can we get them? At first, there was no response. But Steve kept after them, and finally the campaign spokesman responded-with what I consider pure fast-talk and evasion. The following is taken from the web. (Wired Science has no connections to me or my opinions; I just liked what I found and am printing it below; if that bothers them, I will retract it.) "Fred Thompson's Campaign Responds to Stem-Cell Challenge by Steven Edwards November 28, 2007 | 3:13:46 PMCategories: 2008 Presidential Election, Stem Cell Research Fred Thompson's campaign responded to our challenge to provide a list of locations where Americans could receive cord blood or adult stem-cell treatments for the 73 conditions he referenced last week. In case you're just joining us, in response to the breakthrough last week in which scientists converted skin cells into stem cells, Fred Thompson praised adult stem cell research and cited what I believe is an inaccurate and politicized list of 73 adult stem cell treatments that conservative pundit David Prentice has compiled on his web site. In his most recent response, David Ng, a spokesman for Thompson seems to be backpedaling. He said the presidential candidate had characterized the list as "research," not treatments, which is true. But I had followed up with Ng last week to clarify whether Thompson was actually referring to Prentice's list of "treatments." Ng said yes. So, it seems clear that Thompson was saying there are 73 adult stem cell treatments, and I wanted to know where people could get them. Ng continued to dodge the question. His full response is after the jump. Sen. Thompson's statement praises another scientific breakthrough last week where adult skin cells were manipulated to take on the properties of embryonic stem cells. It referenced additional scientific breakthroughs in adult stem cell and cord blood research. There are 73 scientific breakthroughs (we never said cures) for non-embryonic stem cell research, and none for embryo destructive research. THE BOTTOM LINE IS THIS: We should use our limited research dollars in a manner that is most promising. But in reference to your challenge, nowhere does the statement address the issue of where people suffering from these diseases can be treated. The statement only references the research that is occurring. The senator was not trying to refer patients to specific treatment centers but instead to refer reporters to the studies. I reminded Ng that he had already confirmed that Thompson was referring to Prentice's list of "treatments," and that asking where people could get them seemed to be the logical follow-up. (Am I wrong?) Steven Edwards: The challenge was issued because of repeated references to the 73 treatments over the years by multiple parties. The statements were a reference to Prentice's treatments for 73 conditions, as you indicated. If the treatments exist, they will be available somewhere in some form, so I am just asking for a list of where Americans can receive these treatments. It seems to be a logical follow-up question to the statements made by Senator Thompson, and one that I know many people suffering from the 73 conditions have. (I personally have no movement below my shoulders and use a ventilator to breath for me at night due to a 1996 spinal cord injury, suffered at the age of 16.) I understand his statement does not address where people can receive these treatments, but that's the purpose of the challenge. If the treatments exist, where can we get them? If they don't exist, perpetuating the myth that they do is unkind at best. Darrel Ng: The statement speaks about research. You ask about treatments. I don't think it's fair to make that jump. Research always precedes treatment. (That would be akin to the campaign issuing a statement about the success a certain type of alternative vehicle fuel research and encouraging future research in that area, and you asking where can people go and purchase these new cars.) I hope that helps clarify our point of view. It didn't. Our final exchange went a little something like this: Steven Edwards: The source for Senator Thompson's "73 breakthroughs" statement was the list of 73 cord blood and adult stem cell treatments at www.stemcellresearch.org, but your response below says the statement was about research instead of treatments. Does this mean Senator Thompson does not believe that the 73 treatments listed at www.stemcellresearch.org exist? Darrel Ng: You're missing the whole point of this. The point is that the Senator supports the use of limited science dollars in the way that looks to bring the greatest return. I'm not sure why you're bringing us into the debate over the list. If you have issues with the list, that's something I'm sure you can and will discuss on your blog. What we said in reference to the research. Steven Edwards: It's about accountability. Senator Thompson praised the iPS work and referenced the list to back his opinion that cord blood and adult stem cell research are the most promising avenue to invest in going forward. His opinion may be imposed on Americans who hold other views if he wins the election, so it's important to ensure that his opinion can be backed by facts. If the facts support his opinion, so be it. If the facts don't, hopefully Senator Thompson will realize that and modify his position to one that is more in line with the facts. By that, I don't mean he should start supporting research he opposes on moral grounds, but perhaps suggest policies that would enable more people to access the treatments on the list. If the treatments do not yet exist in a form that is available to Americans, acknowledge the fact and suggest policies to help speed their development so that Americans can benefit. Using your earlier analogy on alternative vehicle fuels, if your supporting documents suggest that the fuels are already available for purchase and use, you shouldn't be surprised if someone asks where they can be obtained. Is simple accountability too much to ask from a presidential candidate? Editor's note: this post has been edited. Don Reed www.stemcellbattles.com Don C. Reed is co-chair (with Karen Miner) of Californians for Cures, and writes for their web blog, www.stemcellbattles.com. Reed was citizen-sponsor for California's Roman Reed Spinal Cord Injury Research Act of 1999, named after his paralyzed son; he worked as a grassroots advocate for California's Senator Deborah Ortiz's three stem cell regulatory laws, served as an executive board member for Proposition 71, the California Stem Cells for Research and Cures Act, and is director of policy outreach for Americans for Cures. The retired schoolteacher is the author of five books and thirty magazine articles, and has received the National Press Award. Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn