Christopher Reeve at the New York Academy of Sciences
To the SCI Community and Dr. Young:
You may have heard that I debated the cloning question with Christopher Reeve and two scientists (one for, and one against) this past Monday in New York. The transcript is not yet available, so I'll refrain from commenting on the discussion. The following was my five-minute opening statement.
Dr. Young, for the record I made it perfectly clear in the discussion that you strongly support human cloning research. As you can see, I mentioned your online comments about the possiblity of generating genetically matched cells from cytoplasmic transfer. Dr. Alan Trounson seems to agree with you that this approach is possible. He also seems to think it is more feasible and more practical than cloning.
Thirty-two pages of supporting documentation accompany this presentation. Please email me at OldDrooler@hcnews.com and I'll be happy to send the whole document.
Btw, at the end of the debate I tried to tell Christopher Reeve where an SCI bone marrow stem cell clinical trial was taking place. He had expressed disbelief in his opening statement that any existed. When I tried to immediately tell him (after his opening statement), I was told by the debate's pro-cloning moderator I'd be given an opportunity at the debate's end to do so. But when the debate ended and I tried to tell Chris, I was grabbed by the moderator and physically suppressed while Chris was wheeled from the room. Now Will Ambler tells us on another thread that Dr. Levesque was blocked from contacting M.J. Fox directly.
I know that many here disagree with my cloning views and some even think I'm "from another planet." But can't you see that while people like Chris Reeve and M.J. Fox bring in tens of millions (or more) to the research industry annually, they're even more important as political tools. And like it or not, the same is true of you and me! CR and MJF are only poster-children who represent entire disabled populations, or in other words, us! Simply put, the research industry can't afford to let them be cured. They, like you, are being misled and ruthlessly used.
New York Academy of Sciences
Gene Media Debate, May 20th 2002
James Kelly, panelist
Complex technical obstacles stand in the way of human cloning through somatic nuclear transfer ever being medically used in humans. These obstacles include short- and long-term genetic mutation (1), tumor formation (2), and, unexpectedly, tissue rejection (3). In addition, the cloning process is very inefficient in itself, often requiring a hundred women's eggs to create an embryo able to yield stem cells (4). Because of these roadblocks, scientists expect it will take decades before cloning will have clinical uses (5). And leading scientists in the embryonic stem cell field, including James Thomson (6), have admitted the costs of cloning-based therapy would be "astronomical." Others have simply said that "no one could afford it (4)."
If human cloning research is allowed to move forward, these issues will need to be proven safe for each of cloning's potential medical uses. This will unavoidably necessitate diverting crucial resources away from avenues that have already proven their ability to safely address the conditions that cloning is only hoped to address in the distant future (7). In humans, adult stem cells have been successfully used to treat Multiple Sclerosis (8), Diabetes (9), Stroke (10), Parkinson's Disease (11), Immune Deficiency Syndrome (12), cartilage defects (13), corneal scarring (14), Lupus (15), Systemic Sclerosis (16), Rheumatoid Arthritis (17) and several forms cancer, including Leukemia, Hodgkin's Disease, Sickle Cell Disease, and Breast Cancer (18). They're in clinical trial for Spinal Cord Injury (19), Heart Disease (20), and ALS (19). More work certainly needs to be done to refine and expand their uses and to improve their already impressive performance. But refining, expanding, and improving are a far cry from embarking on highly problematic research with little hope of leading to medically available cures. In fact, such a trade-off would be madness!
Yet we've been told that cloning is "our brightest hope" to cure disease and disability. Many sick, disabled, and dying people have embraced this message out of desperation and trusting hope. Now some in science are telling us that cloning is only a research tool. Nevertheless, in supporting cloning, Christopher Reeve unknowingly misled the Senate with at least seven false or misleading statements in his March 5th testimony (21). Such statements also misled the Press. The Press then unwittingly misleads the public (22,23,24,25,26,27). Yet, without a doubt Christopher Reeve wants to regain his life as badly I want mine. You in the Press surely want cures to be available for you and your loved ones in your moment of need. Therefore, I believe that you and Christopher Reeve must believe what you're being told about cloning. In doing so I believe you're being used and manipulated into cutting your own throats and the rest of America's too.
Please consider this. According to Dr. Wise Young of Rutgers, a "growing consensus" in the regenerative research field acknowledges that stem cells on the verge of maturing into their final adult cell type are "the most desirable" cell type for transplantation (26,28). These are not the early embryonic stem cells that scientists would like to harvest from cloned embryos. Nor does science have any way of bringing stem cells from cloned embryos to this "most desirable" stage (2). Yet, has the Press reported to the Public that stem cells from cloning aren't considered the most desirable cells for medical purposes even if their technical hurdles could be overcome? Why not? I'm willing to bet that none of you knew of this "growing consensus." Furthermore, the study that led to Dr. Young's comments was reported in such a way that to the uninformed it appeared to be a major breakthrough for cloning, when in fact, somatic nuclear transfer into female eggs had nothing to do with it (27). Possibly the reporter didn't understand what he or she was being told. Then who was being used by whom?
And finally, are you aware that recent research has shown that genetically matched cells (or stem cells) may be made directly from adult skin (29). This development strongly suggests the previously mentioned "most desirable cell for transplantation" can be made that would genetically match each patient through a rational, safe, and reasonably affordable process (30). The process used in this study was tested twice and was successful twice. It's expected to produce genetically matched cells of any stage, including embryonic if needed, but without making embryos. In the current political climate this breakthrough was simply colossal, yet it was barely reported in the popular Press. Was this an overlooked omission, or did no one explain its significance to you, and through you to your readers. If not, why?
If cures are needlessly slowed through the diversion of crucial funds, resources, and research careers (7) to cloning, then millions of people will needlessly suffer and die. Is it the proper role of the Press to lead its readers to self-destruction? If not, I can understand the crippled and dying buying into a desperate but futile dream, even at the cost of threatening their real chances of hope. But why is the Press buying into it too?
[This message was edited by James Kelly on May 25, 2002 at 08:07 PM.]
[This message was edited by James Kelly on May 26, 2002 at 03:25 PM.]
"But when the debate ended and I tried to tell Chris, I was grabbed by the moderator and physically suppressed while Chris was wheeled from the room."
This is his normal procedure and I believe it has to do with people trying to touch him, even a light hand on the shoulder, that can throw him from his chair due to spasms. I have the same problem after I've had to sit in one position for very long. But then I can go somewhere and slowly stretch out. Reeve needs help from an aide to stretch enough to stop any huge spasms. Normally no one is grabbed--just a blocked path of people at the engagement get in your way. I wouldn't take it personally, Jim.
Is this guy for real? You do not know, nor do any of us know, the true potential of this research. Why cut out such a promising therapy so early in the game? If in fact after scientific evidence it is proven that cloning will not work then I will be the first to speak out against it. Until then no judgement should be made on its effectiveness.
Actually, it would have been impossible for me to touch or even approach Reeve. We were at opposite ends of a table and there wasn't enough room between the other panelists and the wall for my chair to pass. After effectively muzzling me, the moderator explained he thought I wanted to continue the debate by argueing with Reeve. Not so! I wanted to tell a fellow sufferer who looks like his health is completely failing where a clinical trial is being held.
Regarding this trial, it's a multi-center autologous bone marrow trial in Italy. It's a pilot trial and thus its primarily concerned with safety and proof of procedure. I have its ALS protocol, but not the protocol for SCI. As far as I can tell, it doesn't offer anything for the glial scar or to excite axon regrowth. But in his Senate testimony and at the debate Christopher Reeve said that his condition requires remyelination. I sincerely hope he doesn't think that's all he needs, but he said it both times as though he did. And since bone marrow stem cells have proven in animals to remyelinate the cord, and since he insists he needs a treatment with his own DNA, I wanted to give him something concrete to consider and possibly pursue.
sue if what you say is how it is then he should tell people that so he dosent seem so rude and one sided. just a thought and it still isnt an excuse to be rude.
Jim, thanks for sharing your experience with us here. Also, if you have the transcript or any information in file form, you can attach the file on these forums to save yourself the time of having to send things to people.
I would like to request that you not use my statements from these forums to support your conclusions. You should not be representing my views to the public, especially on human cloning research. We obviously disagree on a number of issues and while I respect your right to hold your opinion, I don't want to be associated with your conclusions.
Shacha, I suspect that the moderator stopped further conversation after the debate probably by request of Christopher's team. It is not Christopher's rudeness but simply his team protecting him. I have been to many fundraisers and events with Christopher and often have not been able to get through to talk to him, and I was always turned away without his knowledge or consent. On several occasions, he even asked me later why I didn't go up and see him at such and such an event. His team is just doing their job of protecting him. So many people aggressively want to touch him, get an autograph, talk, and pose for a picture. I have seen this happen and have been shocked by how rude and totally unfeeling some people can get. His team has no way of telling and therefore usually just shuttle him off as quickly as possible after a public appearance. By the way, in my experience, Christopher is about as nice a man as you can meet anywhere.
[This message was edited by Wise Young on May 26, 2002 at 01:47 PM.]
I'm sorry you no longer want the viewpoints you present to the SCI Community through this forum made public. I would never have done so without your permission. On November 17th, 2001 at 11:55am you posted on Care/Cure.com:
"Jim, of course you may quote whatever I post. Wise."
Nor have I presented one word of yours out of context. In fact, when quoting you in several presentations I've always presented the entire text of the post in question (in my footnotes) so others can judge for themselves if I've taken anything out of context. Out of curiousity, why do you not want the public to know what you're telling the SCI Community? And if you're upset because I'm using too many of your comments to effectively support my "pro-ban" position, why aren't you against it too (since the comments I'm quoting are yours, not mine)?
I will definitely email you the full document I presented in Monday's debate. Apparently I posted the wrong email address in this topic's original text, so if any want this document please try to reach me again (at firstname.lastname@example.org).
Jim, you are correct that I did give you permission to quote me. I had not anticipated that you would quote me to support your conclusions with which I disagree. Thanks for offering to email me the document. Do I have your permission to attach it to these forums so that others can read it? I am not sure that you know but you now attach files to the postings. Wise.
Mr. Kelly, I find it hard to believe that you can even make the following statement about using Dr. Young's comments:
" Nor have I presented one word of yours out of context. In fact, when quoting you in several presentations I've always presented the entire text of the post in question (in my footnotes) so others can judge for themselves if I've taken anything out of context. "
It looks to me like all you have done is take his comments out of context. You pick and choose your statements which seem to support your beliefs, and then hide the context in the footnotes. Knowing full well, that most will never bother reading the footnotes.
Why not stand on your own credentials? Rather than using others out of context. And I will ask again (and i m sure you will ignore again), what is your educational background or credentials? If you put yourself in the public eye, you should least stand on your own credentials.
also Mr. Kelly, why are you so surprised that you couldn't get close to Christopher Reeve? He is probably afraid (I know I am) that if he got too close, he might get hit with a Diapulse machine (sorry Mr. Kelly, could not resist).
I respect your views, but just can't see how you believe you are helping us. ESC research will not (successful or unsuccessful) take anything away from spinal cord research.