Tom Duffy's 9-year old son has spinal muscular atrophy. To raise money for research on the disease, Duffy sat on a Scranton, Pa., billboard for 24 hours. "Honk if you care! Fight spinal muscular atrophy now!" He raised $28,000 for SMA research.
AIDS has Magic Johnson and Elizabeth Taylor as celebrity fund-raisers, breast cancer has Ann Jillian and Rosie O'Donnell, paralysis has Christopher Reeve, sickle cell has "T-Boz" Watkins, juvenile diabetes has Mary Tyler Moore, multiple sclerosis has Montel Williams, and Parkinson's has Michael J. Fox.
And of course, with $1.6 billion raised for muscular dystrophy, Jerry Lewis is the champion celebrity fund-raiser of them all.
But Duffy's son's disease has no celebrity. Neither does lupus, which strikes more people than AIDS, sickle cell anemia, muscular dystrophy, multiple sclerosis and cystic fibrosis put together.
Medical research follows the money, and the federal government has a lot to give — out of your tax dollars, of course. The National Institutes of Health alone will invest more than $20 billion in research this year.
The NIH is about the only federal agency to have its budget increased, and that has a lot to do with the visibility of celebrities who advocate for new treatments. So does the success of some foundations, particularly those with celebrity names attached.
The Celebrity Draw
Celebrities are effective with Congress and in the media because most of us find them so intriguing. Last May, Julia Roberts testified before congress on behalf of $15.5 million in funding for Rett syndrome, a serious neurological disorder affecting young children, especially girls. The disease is tragic, but it certainly helps that members of Congress get a meeting with Pretty Woman while hearing about it.
Politicians and media execs pay attention to celebrities because they think that voters and consumers do. And for good reason. In a recent poll, more than 75 percent of Americans said that the role of the famous in medical research is just about right.
The simple fact is that a famous and attractive person is the best advocate for just about any cause. If they also have the disease themselves, the message only gets more powerful. It's hard to say no to anyone who is suffering, let alone someone whose fame we find fascinating.
Yet we're entitled to ask if this is the right way to set priorities for science. Not all diseases can get equal attention, so there needs to be some way to sort out society's goals. Does star power distort the process?
There is no single "right" way to fund medical research. Public funding always involves politics, and it should — it's the public's money and politics is the way the people express themselves. Private funding always involves private interests and in a free society we can hardly complain about that.
But we can tell when we are seriously off track. Good science should not be overwhelmed by political and personal interests. Until advocacy groups for women, gays and minorities gained strength in the 1980s, Congress tended to focus on diseases that afflicted older white males. We are now more sensitive to the need to distribute both the burdens and the benefits of medical research more fairly.
Another potential problem is that science is closer to breakthroughs in some conditions than it is in others. In a world of limited resources and lots of good causes, a few celebrities can make a big difference, not always in the most promising direction.
Consider the non-celebrity diseases, like SMA and lupus. A compelling celebrity appeal can take us off track by making us focus on a specific disease to the disadvantage of others with at least a powerful a case.
Recently Julie Andrews lent her prestige to an effort to study how to restore damaged vocal cords. Her singing career ended due to a surgical mistake. A serious loss, to be sure, but it is reasonable to ask how it stacks up against other causes, while a cure is at best many years away.
We should also be wary of stars' medical advice, even though they have the best of motives. After Katie Couric's husband died of colon cancer at age 42, she recommended screening for people that age, but doctors don't.
Many celebrities have urged early prostate cancer screening, though there is great disagreement among experts about it. Not only are there costs in time and expense, but false positives can cause needless grief and even unnecessary medical procedures. In many cases of early disease detection, nothing can be done anyway.
This seems to be part of a new trend. Michael J. Fox, who has Parkinson's disease, thinks the relatively high incidence of the malady among those who worked on a TV show with him is suspicious. He is pushing a theory that the disease is caused by a virus, but hardly any scientists think this is a promising line of study.
Similarly, Christopher Reeve is said to be concerned about the direction of spinal research. We may be entering a period in which celebrities direct the course of science rather than scientists.
In the end, the greatest service that star power can do is call attention to the tragedies that follow from a serious disease and help us realize the need to support science.
The rich and famous do a service in reminding us that even they can be sick and afraid. In this way, they keep us aware of our common humanity, whether our disease has a celebrity or not.
Jonathan D. Moreno is director of the Center for Biomedical Ethics at the University of Virginia.