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Putting a Human Face on Stem Cell Research Politician Physicians Combine Medicine & Public Service New GME Policy Aims to Ensure Quality Education, Patient Care
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Personalizing the Political: Patient Advocates Put a Human Face on Stem Cell Research
Before the Bush administration announced its intention to re-evaluate the guidelines for federal funding of embryonic stem cell research, most Americans were unaware of the function of stem cells and their potential to treat disease. But that ignorance did not last long. Faced with the possibility of a prohibition on spending federal dollars on embryonic stem cell research, the scientific community and patient advocacy groups came together to mobilize a massive effort to educate policy-makers, the public, and the media about the therapeutic potential of this promising new frontier in medicine. Soon the latest developments in stem cell research became front-page news. Countless journals, newspapers, and magazines devoted to the topic flooded America's newsstands; congressional committees held public hearings and members of the House and Senate strongly voiced their opinions; and, perhaps most important, patient advocates suffering from diabetes, Parkinson's disease, paralysis, and other illnesses that scientists say may benefit from stem cell research took their stories to the airwaves and into the living rooms of America's homes. Some of those patient advocates were already well known to the American public. Janet Reno, Michael J. Fox, and Christopher Reeve all appeared before congressional committees and media outlets, urging politicians and the public to support funding for a type of research that for some raised serious ethical concerns. "The mere fact that patient advocates are suffering from diseases scientists hope to cure puts a human face on the issue," says Christopher Reeve, founder of the Christopher Reeve Paralysis Foundation (CRPF). "It is one thing to present legislators with statistics, but quite another to make them face real people who testify at congressional hearings or speak out in the media." Formerly the American Paralysis Foundation, CRPF is a member of a unique coalition of universities, academic and scientific organizations, private companies, and patient advocacy groups, including the AAMC, that together form the Coalition for the Advancement of Medical Research (CAMR). A nonprofit, grassroots organization with the explicit goal of supporting funding for stem cell research, CAMR has utilized the unique means of each of its members to work toward its common goal. "I think our coalition has been very effective in pooling our resources and making stem cell research one of the top political issues of the year," says Larry Soler, chairman of CAMR's board of directors and director of government relations for the Juvenile Diabetes Research Foundation (JDRF). Soler, who was diagnosed with juvenile diabetes 10 years ago, perceives education as an essential mission of his organization. "We have spent a lot of time educating the public about what stem cell research is and what it isn't," he says. "We sent out materials, put information on our Web site, and reached out to the media. Once people learned more about this research and realized it wasn't an abortion issue, they accepted and supported it." But Soler says that patient advocates cannot take all of the credit for educating Americans about stem cells. He points to the partnership between scientists and patients that CAMR embodies as essential to meeting their mutual goals. "We are all moved by personal stories," says Soler. "That was never more evident than in the aftermath of September's terrorist attacks. Health professionals contribute their expertise in research and patient care, but their message is more effective when conveyed in conjunction with real people's stories. Likewise, although patient stories make the subject matter more interesting and imminent, we need the expertise of the research community to back up our claims. For example, the AAMC's scientific expertise and detailed knowledge of federal research policy proved invaluable to our ability to educate federal officials and the general public about the importance of this issue." "It's incumbent upon any patient advocacy organization to educate those who make the critical decisions that affect their constituencies," agrees John Rogers, a member of CAMR's board of directors and director of advocacy and education for the Parkinson's Action Network. Both Rogers' grandmother and father died of Parkinson's disease. "You have to humanize the science. The real impact is felt when policy-makers get to know someone who has a disease that may be cured by stem cell research." Rogers says that patient advocacy groups also spur scientists to be more responsive to their causes, helping move research along at a faster pace. "In the case of the Parkinson's community, we have played a long-standing role in both working with and, at times, pushing the NIH to be more aggressive in its efforts to uncover the cause and cure of Parkinson's. Without that kind of advocacy, it's not clear where we would be today." Reeve affirms that the same can be said for those who suffer from paralysis. "I have been told by a number of scientists who have been working for years in the field of spinal cord injury repair that the push by patient advocacy groups and the greater media attention they engender has helped with funding and renewing their research efforts." However, Reeve cautions patient advocates not to raise expectations for imminent cures. "The hope projected by patient advocates must be based on a working knowledge of the latest breakthroughs," he says. "Scientists are generally overcautious. Advocates can express greater optimism, but they must be extremely careful not to mislead the public." "It's a balancing act," agrees Soler. "We all have a lot of hope that stem cell research will eventually be a critical component to finding cures for these diseases, but we must be very careful not to over-promise anything. The truth is we won't know anything for sure unless the research is permitted to go forward." |
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