 |
 |
September 26, 2008 by diverdonreed BACKSTAGE AT THE WORLD STEM CELL SUMMIT Folks: As anyone who has attended a Bernie Siegel stem cell extravaganza can verify, attendees get more than they could hope for. This year's World Stem Cell Summit was no exception. Every year I think, this is the ultimate, can't get any better than this; but it does. Bernie has put on events at the United Nations, Stanford, Berkeley, Harvard, and this year the American birthplace of embryonic stem cell research, Madison, Wisconsin.-the Summit deserves its own book (and in fact had one there, to which I contributed a story, "How to Pass a Stem Cell Law") -but I just don't have the hours it deserves to write a full description. Here, then, are only a few impressions. Dropping off my luggage at the Sheraton Hotel, (being a speaker, I got my room paid for, otherwise I would be Motel Six-ing it as usual), I hurried for the bus- -to the Governor's mansion. How classy is that? On the drive over, I realized I had missed out on the Lab at the Lake, a hands-on-easy-to-understand tour through stem cell realities. The Summit's goal was something for everyone: the Lab at the Lake meant folks had a chance to talk with world class scientists as well as personally adjusting a high-power microscope to see stem cells for themselves. So, anyway, the Governor of Wisconsin had invited us to visit in his official residence. We walked through a replica of the Washington White House, polished floors and high ceilings, all the way through to the back yard. There on the lawn was a big no-walls tent. After we had chatted with other attendees and picked at the barbequed skewers of (I think) chicken and maybe tomatoes, Bernie introduced Governor James Doyle, a very down-to-earth person. (The Italian driver of the cab from the airport told me: "His-a heart in the right place, Jim Doyle!") This is also a man of integrity. Despite enormous pressure from the religious right to sign bills against research, Wisconsin's leader used his veto power, not once, but twice. Governor Doyle welcomed us to Wisconsin, talked for a little while about why he liked stem cells, and then we got back on the bus. Six o'clock next morning, I asked how to get to the conference building. "Easy," they said, "Just across the street, you can't miss it." But as I crossed the street, all I could see was a dense gray fog bank, like something out of Sherlock Holmes' London. This changed everything. And as I fumbled through the mist, feeling increasingly lost, it occurred to me how very similar our current political situation this was. Here we were, the country ready and anxious for massive stem cell research funding, and we had instead a financial emergency of unprecedented proportions. But I stayed on the sidewalk, solid beneath my shoes-and suddenly, a mass of concrete rose before me: the Alliant Energy Hall. Quickly, the place was packed with nearly a thousand friends of stem cell research. People like: Alta Charo, bioethicist, a bubbling volcano of energy, intelligence, and eloquence: listening to her is always a pleasure because she has so much to say and says it so well. Occasionally, to be sure, I get about three ideas behind the one she is on right now, because she talks so fast and says so much, but I always walk away enriched. Waiting for the shuttle, I had a chance to chat with another bioethicist, David Magnus, of Stanford, who really knows his stuff on the issues of Intellectual Property, and more. Wise Young's beaming presence is always welcome; the man who (in addition to his duties at Rutgers University, and endless advocacy for research) also runs a massive patient-involvement website, CareCure.org. Wise is working on human trials in China, spinal cord injuries, to be treated with umbilical cord blood stem cells, and also lithium. One shocking moment: onstage a person (I will not use his name) made a statement which infuriated me. He said, we should stop using the word "cure" when it came to spinal cord injury, and instead stick to "treatment". The clear implication was there would never be a cure. Dr. Young corrected him, gently but with passion, pointing out nobody suggested removing the word cure from the fight to cure cancer. (Hours later, Wise was still upset about this.) California Institute for Regenerative Medicine President Alan Trounson gave an update on the CIRM's activities. Alan's great gift, I think, is not only his scientific acumen, which is immense (he is considered one of the inventors of the In Vitro Fertility procedure, which allowed literally millions of childless families to have a baby) but the ability he has to make friends for our cause. It is impossible not to like him. He radiates good cheer. He said something I did not understand, and hope to ask him about-he said, if I understood correctly, that "the NIH may not be the best model as a funding source". Larry Goldstein gave a ten-minute hint on how stem cell research is transforming health care. (I would have liked to see him do a keynote address, as he has so much to say, and expresses it so well). He spoke about nerves as rivers of information, and that science has "worn out what we can do with animals", meaning, I took it, that it is time to go to human trials, a position with which I heartily concur. "Humans are not big mice", he said. He spoke about the importance of embryonic stem cells not only as the source of replacement cells for damaged parts of the body, but also as the "neighborhood" around the cells, vital if the cells are to function properly. John Wagner I sat next to on the bus going somewhere, and I was impressed by his passion, that it was time to press for cures for patients, and for government to not set impossible standards which could block progress. Jamie Thomson gave a keynote address about reprogramming, his and Shinya Yamanaka's new method of obtaining stem cells. I was glad to hear him clearly state that this new procedure in no way eliminated the need for embryonic stem cell research, and that both must proceed concurrently. Dr. Thomson is of course brilliant beyond belief, but he is a little hard to follow sometimes, because his voice volume varies tremendously, sometimes almost inaudibly soft. He was at his best at the press conference. I took the opportunity to thank him, saying that when my paralyzed son rose and walked again, his first step was taken right here. Amy Comstock-Rick gave a very careful and non-political look at the difference between the two Presidential candidates. (I wanted her to be a little tougher on McCain, to discuss his co-signing a bill to criminalize SCNT and put stem cell scientists in jail, not to mention his position on the "personhood" issue, which conceivably could destroy the whole field; but she stuck strictly to his stance on embryonic stem cells.) Clive Svendsen talked about Wisconsin's efforts and Hideyuki Okano of Keio University did the same for Japan, both talks a little over my head (I was glad for the shortness of science talks; I start to nod off after too much incomprehensibility). Breaks were welcome, not only for the necessaries, but also to (as Bernie puts it) "work the halls", making friends while checking out the exhibits and the scientists posters and the bioemedical displays. Jeff Sheehy spoke about the difficult subject of what happens if a patient dies in clinical trials. This is huge-I am personally sick and tired of people telling me we should not go forward until we can guarantee safety-we cannot guarantee safety for any medical procedure, even standard treatment. So it meant a lot when he spoke about the people who died in the HIV-AIDS trials- but that tragedy did not stop the research. Peter Kiernan of the Christopher and Dana Reeve Foundation gave a rousing update on that great humanitarian effort. He also gave a very intelligent list of "top ten" issues-getting politics out of science, funding young scientists, pushing translational efforts, increasing the global network, refocusing debate onto new disease models, educating the press, embracing business, helping international cell banking, developing and enforcing rigorous standards for ourselves, and achieving a clinical breakthrough. A breakout session discussed "Stem Cell Tourism", both bad and good! Mark Noble (outstanding writer as well as scientist) and I had the chance to say hello in person, always one of the real joys of a good convention. Bob Klein dealt with the "We can't afford stem cell research" issue, remind us that California passed a $6 billion program in one of the worst years (financially) in our history. He reminded us of Governor Schwarzenegger's great line that "scientists are the real action heroes of the 21st century. Mark Burton and Danny Heumann reminded us all of the crucial state of Michigan, now trying to fight its way out of some of the most crippling anti-research laws in the country. Sabrina Cohen spoke about paralysis, making everyone hold motionlessly still for sixty seconds, so we had a tiny idea of what it is like to be paralyzed. Sabrina is trying to develop funds for a movie about the real-life issues of stem cell research, and we wish her well. If anybody has any ideas on funding sources, drop a line. Hans Keirstead shared with us not only his progress, but also advice for scientists-at his lab, three staff members have a fulltime job cooperating with the FDA, whose approval is needed before human trials can go forward. Linda Powers of Toucan Industries, a venture capitalist firm specializing in stem cell research, gave us a look inside the money world. Dr. Fanyi Zeng, proof that SCNT scientists can be movie star beautiful, gave us the scoop on China's hopes for biomedical investment, stating that by 2020, China hoped to have 2.5% of their Gross Domestic Product invested in bio research. Tommy Thompson told the story of how President Bush called him and Karl Rove in, and ate a peanut butter sandwich while the two debated hESC research, stating that this was the conversation which allowed the President to leave a tiny window of research open, rather than banning it altogether. Greg Simon of Faster Cures had a political comment, saying "Wwspd-What would Sarah Palin do"-and suggesting we do the opposite. Alta Charo spoke on the need for balance in human trials between safety and the need to advance cures for suffering millions. I had a chance to talk about legislative fights past and present, mentioning that anyone wanting to help the California stem cell program should FAX THE GOVERNOR, and tell him to VETO S.B. 1564. His fax number is: 916-558-3160, and he will be deciding in the next few days, whether or not to support a bill which would remove California's legal preference for embryonic stem cell research, as well as attacking our magnificent governing board, the ICOC, a 29-member panel of experts, conceivably replacing them with bureaucrats. (Please FAX him today, if possible.) And just to make it perfect, on the plane home I sat next to Graham Creasey, who is working with Gary Steinberg-and my son Roman Reed- to set up a spinal cord injury project at Stanford University. Whew! What a glorious couple days! And now, back to work! Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson 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