Diseases attract more research funding when a celebrity asks for it, Newsweek reports.
When Joan Samuelson, president of the Parkinson’s Action Network, first traveled to Capitol Hill to lobby for research funding in 1991, the best she could do was to get a 10-minute meeting with a representative’s legislative assistant.
When she returned with actor Michael J. Fox on her arm, she told Newseek, they were able to meet with congressmen for a full hour.
And when Fox testified in Congress, the Senate hearing room was mobbed.
The star couldn’t persuade the Congress to come up with an additional $75 million, but the legislature did increase funding for research into the disease.
More medical research money than ever is available. The budget of the government-funded National Institutes of Health, the most important source of research money, has doubled in the past decade.
At the same time, the booming economy has encouraged private donors to give more.
Yet while the pie is bigger, causes with celebrity attract more attention — and money.
Since 1984, Mary Tyler Moore has helped boost the research budget of the Juvenile Diabetes Foundation International from $3 million to $75 million.
Before Christopher Reeves became its spokesman, the American Paralysis Association netted about $500,000 at its annual gala. Last fall the group, now known as the Christopher Reeve Paralysis Foundation, raised nearly $2 million.
The use of celebrities in the battle for research dollars has led to some perceived inequities.
AIDS gets more money than do heart disease or strokes — diseases that kill more each year.
But increased AIDS funding led to breakthrough drugs, and that funding was secured by activists as much as by stars.
“AIDS is the contemporary model for how a group gets a larger share of the pie,” said Morton Kondracke, executive editor of Washington’s Roll Call and an advocate for increased research funding.
“Organize your community,” he told Newsweek. “Get people to visit members of Congress. And if you can, find a movie star who will epitomize the problem.”
Congress is a key part of the funding puzzle for disease researchers. This year the NIH will give out $18 billion to researchers throughout the U.S.
Officially, committee chairmen do not allow the earmarking of funds for specific diseases. But Congress still sends the budget off with a written set of instructions that are very influential.
“We tell them what we’re interested in, whether it be more research on Parkinson’s or prostate cancer or breast cancer, in the strongest terms we can come up with,” says U.S. Rep. John Porter, chairman of the House committee that oversees medical research appropriations. Although NIH scientists make the final decisions, they pay close attention to the government’s preferences. Nonprofits know this, and use stars when they can to draw legislators’ attention to their cause.
Some celebrities espouse a cause to boost their own public profile.
“I get calls all the time from publicists saying, ‘Find me a charity. Any charity will do’,” says Barry M. Greenberg, head of Celebrity Connection in Los Angeles, which links Hollywood stars with causes
“I ask what sort of things they’re interested in and they say, ‘Whatever.’ They are just looking for publicity.”
Not all celebrities are so cynical, however. Many are impassioned and well-informed advocates for a cause. And some — like Reeve and Fox — ask for research money for diseases they themselves have. If more money is what it takes, these stars are more than happy to use their celebrity to get it.
Not all disease-fighting efforts are funded according to how many people are affected or die. Heart disease is the nation’s biggest killer, but AIDS research gets more government money.
Here, according to Newsweek, is a look at 1999 funding by the National Institutes of Health, in millions, followed by the disability ranking of the disease:
AIDS — $1,793, 15
Breast cancer — $475, 14
Diabetes — $458, 8
Heart disease — $269, 1
Schizophrenia — $201, 10
Stroke — $186, 4
Prostate cancer — $178, 19
Lung cancer — $163, 6
Asthma — $140, 17
Parkinson’s — $132, 21
Multiple sclerosis — $97, 25