Stars Can Influence Medical Research Funding

July 8, 2002 -- Tom Duffy's 9-year old son has spinal muscular atrophy. To raisemoney for research on the disease, Duffy sat on a Scranton, Pa., billboardfor 24 hours. "Honk if you care! Fight spinal muscular atrophy now!" Heraised $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 musculardystrophy, Jerry Lewis is the champion celebrity fund-raiser of them all.

But Duffy's son's disease has no celebrity. Neither does lupus, whichstrikes 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 lotto give — out of your tax dollars, of course. The National Institutes ofHealth alone will invest more than $20 billion in research this year.

The NIH is about the only federal agency to have its budget increased, andthat has a lot to do with the visibility of celebrities who advocate fornew treatments. So does the success of some foundations, particularlythose with celebrity names attached.

The Celebrity Draw

Celebrities are effective with Congress and in the media because most ofus find them so intriguing. Last May, Julia Roberts testified beforecongress on behalf of $15.5 million in funding for Rett syndrome, aserious 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 theythink 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 isjust about right.

The simple fact is that a famous and attractive person is the bestadvocate for just about any cause. If they also have the diseasethemselves, the message only gets more powerful. It's hard to say no toanyone 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 forscience. Not all diseases can get equal attention, so there needs to besome way to sort out society's goals. Does star power distort the process?

There is no single "right" way to fund medical research. Public fundingalways involves politics, and it should — it's the public's money andpolitics is the way the people express themselves. Private funding alwaysinvolves private interests and in a free society we can hardly complainabout that.

But we can tell when we are seriously off track. Good science should notbe overwhelmed by political and personal interests. Until advocacy groupsfor women, gays and minorities gained strength in the 1980s, Congresstended to focus on diseases that afflicted older white males. We are nowmore sensitive to the need to distribute both the burdens and the benefitsof medical research more fairly.

Influencing Science

Another potential problem is that science is closer to breakthroughs insome conditions than it is in others. In a world of limited resources andlots of good causes, a few celebrities can make a big difference, notalways in the most promising direction.

Consider the non-celebrity diseases, like SMA and lupus. A compellingcelebrity appeal can take us off track by making us focus on a specificdisease to the disadvantage of others with at least a powerful a case.

Recently Julie Andrews lent her prestige to an effort to study how torestore damaged vocal cords. Her singing career ended due to a surgicalmistake. A serious loss, to be sure, but it is reasonable to ask how itstacks 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 thebest of motives. After Katie Couric's husband died of colon cancer at age42, she recommended screening for people that age, but doctors don't.

Many celebrities have urged early prostate cancer screening, though there isgreat disagreement among experts about it. Not only are there costs intime and expense, but false positives can cause needless grief and evenunnecessary 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'sdisease, thinks the relatively high incidence of the malady among thosewho worked on a TV show with him is suspicious. He is pushing a theorythat the disease is caused by a virus, but hardly any scientists thinkthis 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 attentionto the tragedies that follow from a serious disease and help us realizethe need to support science.

The rich and famous do a service in remindingus that even they can be sick and afraid. In this way, they keep us awareof 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.