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The Los Angeles Times Thursday, June 21, 2001 Heart Assn. Chills Embryo Cell Studies Health: Organization's retreat on promising research infuriates patient advocates. By AARON ZITNER, Times Staff Writer WASHINGTON--As evidence mounted last year that embryo cells could be tweaked in ways that might cure disease, the American Heart Assn. decided to spend some of its own money to see whether the cells could ease heart disease. No less would be expected from an organization that exists largely to tame the nation's No. 1 killer. Then came a flood of protest letters, including one from the Roman Catholic archbishop of St. Louis. In Missouri, an entire fund-raising committee resigned, dropping its plans for a gala ball. Donors who opposed abortion said they could not support the destruction of human embryos. So now, just as President Bush is deciding whether to invest federal money in embryo cell research, the nation's second-largest patient advocacy group has gone silent. In fact, its board voted last October not to fund the very research that it had endorsed only four months earlier as full of promise. The American Heart Assn.'s reversal shows just how uncertain the political waters have become as Bush readies his decision on the research, which is expected in July. Like the heart association, Bush must choose between the hope that embryo research will save lives and the fear that it will alienate those donors and supporters who object to experiments in which human embryos are destroyed. Bush, in his limited public comments so far, has given every indication that he will oppose federal funding for the research. And yet some other abortion foes, when faced with a similar choice, have backed patients over embryos. Last week, Sen. Orrin G. Hatch (R-Utah) broke with his anti-abortion allies and urged Bush to support embryo cell research, lauding its potential to cure cancer, Alzheimer's disease and diabetes. Two other Senate Republican abortion foes have long supported the research. Health and Human Services Secretary Tommy G. Thompson, an abortion opponent and former governor, argues that the research is "very important." Advocates for the research hope that these Republicans will show Bush that he can safely support embryo cell research without alienating the conservative voters who helped him reach the White House. But at the same time, the American Heart Assn. stands as the opposite example--as a patient advocacy group that will not advocate for the research. "This raises the question whether this makes it easier for Bush to oppose embryo cell research, because he can say the American people are unhappy with it," said Alexander Capron, a professor of law and medicine at USC. Several other disease advocacy groups are unhappy that the heart association will not ask its force of more than 4 million volunteers to lobby the White House to support federal funding. "On issues like these, patients and families are the best advocates you can have," said Sean Tipton, spokesman for the American Society for Reproductive Medicine. "The heart association is influential in this town, and we sure wish they would join us in the efforts to mobilize their people for [embryo cell] research." "It's a legitimate decision for them to make, but it's based on fund-raising and not on science," said Douglas Melton, a diabetes researcher and chairman of Harvard University's department of molecular and cellular biology. "As a scientist, I can say their decision is shocking." Groups devoted to juvenile diabetes, spinal cord injury, Parkinson's disease and other ailments are leading a campaign to persuade Bush to support the research. Like the heart association, the American Cancer Society--the nation's largest patients' group by donations--has not joined the coalition. Officially, the national board of the American Heart Assn. supports federal funding for the research, but the group is not lobbying Bush for it, and it declines to spend any of its $133-million annual research budget on embryo experiments. The route to its nuanced position was circuitous and contained a few surprises. Research using embryos became an issue in November 1998, when a University of Wisconsin researcher first isolated and cultured a special type of cell, known as a stem cell, that arises in embryos several days after sperm meets egg. As the embryo grows, its stem cells give rise to every other type of cell, tissue and organ in the body. The discovery of embryonic stem cells immediately raised hopes that doctors could one day learn to grow them into replacement tissues for patients--new brain cells for Parkinson's patients, pancreas cells for diabetics and nerve cells for people with spinal cord injuries. Many researchers looked to fertility clinics as a source of embryos, as fertility patients often create more embryos than they need when trying to conceive children. At the heart association, officials were also excited about stem cells. "Stem cells could conceivably repair damaged heart tissue and even repair damaged brain tissue in the case of stroke," said Dr. John Schafer, a California neurologist and former heart association board member. In the spring of 1999, the heart association formed a task force to consider whether to fund stem cell research. As part of its work, the task force surveyed not only the science but also the opinion of heart association leaders. It polled the 15 regional affiliates, the 13 scientific councils and various other committees that oversee the group's management and programs. The reports that came back generally cheered supporters of embryo cell research. Scientists in the surveys thought the heart association should fund stem cell research. The regional leaders were split by geography. Those in the Northeast were fully supportive of association funding, while those in the heartland thought the group might pay a penalty in donations and volunteerism. Last June, the task force presented its report to the 43-member national board of directors, which voted to fund embryo cell experiments, once ethical guidelines were completed and approved. But the task force had miscalculated. It had surveyed the association at a time when stem cell research was not widely debated or understood. Shortly after the June vote, Pope John Paul II said that medical techniques that destroy embryos are "not morally acceptable, even when their proposed goal is good in itself." Senators began debating the research, showing that people held widely divergent views. Regional affiliates of the association began reporting that volunteers were threatening to quit. Corporate donors, wary of controversy, suggested that they might also pull out, Livingston said. Among the protest letters was one from Archbishop Justin Rigali, who leads the Archdiocese of St. Louis. Reconsidering public opinion, officials made a new damage assessment: Funding stem cell research would cut donations by $9 million to $15 million in the first year and by $45 million to $50 million the next. The association raised $485 million last year. Officials worried that by funding the speculative work on embryo cells they might lose money slated for other important research. Moreover, officials worried that its volunteers would no longer be able to speak at certain churches and hospitals, delivering the message of how to prevent heart disease and stroke. And the group's political goals, such as boosting federal health research funding and requiring defibrillators in public buildings, might also be jeopardized. Looking to Bush's decision, David Livingston, an executive vice president of the heart association, said he did not see much room for compromise between supporters and opponents of the research. "It's hard to say there are going to be all winners. Some are going to be unhappy, regardless of how it comes out." http://www.latimes.com/news/nation/20010621/t000051291.html * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn