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From: Mercury News Posted on Tue, Aug. 08, 2006 Patient advocacy improving prospects for stem-cell research By Christopher Thomas Scott The summer of 2001 was a rough one. At the time, I was assistant vice chancellor at the University of California-San Francisco. One of our top scientists, Roger Pedersen, announced that, because of uncertainties surrounding embryonic stem-cell research, he was fleeing to Cambridge University, where the laws offered greater scientific freedom. Then, Aug. 9, President Bush said no federal funds could be used to make new lines of human embryonic stem cells in the United States. The pronouncement ignited five years of ferocious political and moral conflict, including debates on abortion, fears of runaway science and the question at the heart of the matter: How, as a society, do we balance our responsibilities to the unborn and to the sick? On this point, the majority of Americans are now clear about where they stand. A donated, frozen embryo -- smaller than a pinprick -- is not a fetus, nor a baby, nor a human being. Seventy percent of us say embryonic stem-cell research must move forward. Spasms of legislation reveal how difficult it has been for Congress to absorb the nuance of the debate. In 2001 the House, led by a group of religious conservatives, passed a bill that would imprison scientists, patients and caregivers, criminalizing the production of cell lines and their use for future therapies. Four years later, the House passed a bill that would overturn the Bush policy, HR 810. Just last month, with senior Republican sponsorship, HR 810 passed the Senate. But it was four votes shy of the number needed to override Bush's first presidential veto, his pen punctuating five years of rancor. Today, on the five-year anniversary of the president's decision, I feel good about the prospects for stem-cell research. Bush's policy is backfiring. The lost years of funding notwithstanding, states like California are stepping in to fund embryonic stem-cell research. And the recent fight in Congress took on greater urgency, with articulate arguments and personal, impassioned speeches. What's behind the change? The answer is Americans with disabilities and diseases. Since 2001, patients and their advocates have been doing the heavy lifting in Washington, asking for meetings, testifying before committees and organizing letter-writing campaigns. At a national stem-cell advocacy conference this summer at Stanford, I realized how difficult the work really is. Patients travel thousands of miles on small budgets, many of them confined to wheelchairs. Their optimism and steely-eyed resolve is astonishing to see. Patient advocacy has energized other research movements for such diseases as AIDS and cancer. But the hope for embryonic stem-cell research transcends individual disorders, and the sheer enormousness of the promise has given rise to a powerful group called the Coalition for the Advancement of Medical Research (CAMR), which represents more than 100 organizations such as the Juvenile Diabetes Research Foundation. When a scientific expert and a person suffering from a debilitating disease enter a politician's office for yet another meeting, CAMR has usually organized it. A lobbyist I know describes CAMR's slow, steady strategy as ``water torture'' -- deliberate and unrelenting. A dithering Congress deserves to be called slow, among other things. But laggardly lawmaking isn't always a bad thing. It is easy to pass bad laws, and devilishly hard to undo them. The creeping pace has given journalists time to catch up, and the reporting today is much better than it was five years ago. Last year, the Boston Globe won a Pulitzer Prize for its clear explanation of the complexities surrounding stem cells. Better information gives legislators a firm grip on the issues and now, finally, the votes show the results of hard work by patients and science writers alike. The summer of 2007 may be the best yet. Will Congress finally outmaneuver George W. Bush? It could happen, and we'll have patients and their families to thank for it. ---------------------------------------------------------------------- ---------- CHRISTOPHER THOMAS SCOTT is executive director of the Stanford Program on Stem Cells in Society. He wrote this article for the Mercury News. ---------------------------------------------------------------------- ---------- © 2006 MercuryNews.com and wire service sources. All Rights Reserved. http://www.mercurynews.com ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn