Star
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Celebrities lend their name to charities to raise money and open opportunities |
| Star
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Celebrities lend their name to charities to raise money and open opportunities |
| Illustrations by Malcolm Garris |
by
Anne Federwisch, OTR You recognize the names Jerry Lewis and Christopher Reeve more readily than the Muscular Dystrophy Association or the American Paralysis Association (APA). That’s what makes the two celebrities’ association with those groups so valuable. With only three cents of every healthcare dollar going to medical research, those seeking contributions or grants face a tough fight for limited resources. But while celebrities’ involvement can enhance the public’s image of a cause, it’s only part of a complex formula affecting how money is doled out for medical research, experts say. "Everybody wishes they could find a Jerry Lewis," said Abbey Meyers, president of the National Organization for Rare Disorders in New Fairfield, Connecticut. NORD is a federation of nonprofit organizations that serve people with rare diseases, ones affecting fewer than 200,000 Americans. Meyers said that celebrities can open doors to other influential people, doors that would remain locked for ordinary citizens. "Every disease organization is hoping that they’ll find some movie star who will do that for them," she said. Assuring recognition Christopher
Reeve has certainly provided a very prominent
profile for the APA since becoming chairperson
of the board in 1996, said Susan Howley,
APA executive vice president and director
of research. "His injury and his advocacy
for research in general as a spinal cord-injured
person have been very powerful influences
in the field, no doubt about it," The APA’s budget has increased over the last two to three years from Reeve’s efforts, said Jonathan Savage, APA vice president of communications and administration. "I certainly believe that donations to APA have increased as a result of Mr. Reeve’s visibility," Savage said. Reeve appears in full page advertisements for the APA and the Christopher Reeve Foundation that have run in several national publications, including Good Housekeeping and Newsweek. Other influences But celebrities are not the only players in the political process of getting money for research, according to Mary Durham, PhD, vice president for research for the Kaiser Foundation Hospitals and Kaiser/Group Health in Portland, Oregon. The government and nonprofit organizations that fund studies set priorities based on the number of lives affected, on the burden of illness on the public in terms of financial and quality of life issues, and on public pressure and political clout. Congress sets the budget for the National Institutes of Health—one of the largest sources of money for medical research—so public pressure can assert great influence, said Mary Palmer, PhD, RN, FAAN, associate professor and acting director of research at the University of Maryland at Baltimore School of Nursing. She worked for the NIH for over six years and is a guest researcher with the National Institute for Nursing Research, a division of the NIH. "The Congress certainly is influenced by its constituency. I can’t say that there’s direct linkages, but certainly it’s a semi-permeable membrane," Palmer said. "I think you can have a lightning rod of a person, but I don’t think that’s the only piece of the equation." Other considerations include what is currently known and unknown in the particular field, she said. "Where are we with our knowledge? Where are we with the science?" Designating funds What’s disturbing to Meyers is that Congress often earmarks money for a particular disease. "As politicians reserve slices of the [NIH] pie for certain diseases, there’s less left over for other diseases," she said. "If it were truly fair, then the best research would get funded."
The director of NIH, Harold Varmus, MD, testified to Congress last year against designating certain funds for particular causes. "Existing methods for resource allocation at the NIH are preferable to congressional directives," he said. Scientists—not politicians—should balance the varying research needs, Varmus said. Getting noticed Yet Congress continues to respond to constituents, said Joe LaMountain, national director of advocacy for the American Diabetes Association. "The squeaky wheel gets the grease," he said. "It’s not celebrities. It’s not high-powered lobbyists. It’s not political contributions. It’s people back home telling their members of Congress that they want to see a cure for the particular disease that is important to them." He said that in the last 10 years, diabetes research has lost about $10 billion because advocates have not been as vocal as those for competing causes. "We’re not saying that money should be taken away from AIDS or from breast cancer. To be perfectly honest with you, I think the funding levels for AIDS and breast cancer are appropriate," he said. "I think that diabetes has been historically underfunded." To raise its visibility, LaMountain said, the ADA has been working to tap into the "I’m outraged" sentiment among those with diabetes. "I think you’ll begin to see more money going to diabetes research because people in the diabetes community are getting more involved," he said. Celebrities are not the only key to funding, LaMountain said. It’s the loud voice of many people asking in unison. |
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***** WEB SITES MENTIONED IN THE STORY American Paralysis Association Muscular Dystrophy Association National Institutes of Health's document Setting Research Priorities National Institute for Nursing Research National Organization for Rare Disorders ***** |
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