It may have been the best-attended appropriation subcommittee hearing in the history of the House of Representatives. Was it a discussion about how much money will go to education or even homeland defense? No, members of Congress and the media crowded to witness superstar Julia Roberts' request earlier this month for $15 million of research funding for the rare, albeit serious Rett Syndrome. The International Rett Syndrome Association cites 3,000 United States cases of the neurological disorder, which prevents patients from communicating or controlling their body movements.
As CNN's Jonathan Karl reported, "I've never seen so many people crowd into an appropriations subcommittee hearing."
We all wish there were enough research money to cure or better prevent Rett Syndrome, as well as many other horrible diseases. But given a limited amount of money for research, we should spend that money wisely, getting the biggest bang for each public health buck.
According to Dr. Arthur Caplan, director of the Center for Bioethics at University of Pennsylvania Medical School, "the research pie is more like a balloon; when a celebrity sits on one end, that budget really gets distorted." Distorted, because "the prevalence and burden of a disease is not related to which disease attracts celebrity support."
Should we be taking money from one cause and giving it to another depending on which cause attracts this biggest celebrity? As Christopher Reeve and Michael J. Fox could tell you, stars can have a big impact.
Since Mr. Reeve began appearing on Capitol Hill five years ago, federal research funding for spinal cord injuries has increased $20 million a 50% increase. Contrast that with lupus, which afflicts 1.4 million Americans, five times the number who suffer from spinal cord injuries, but receives less than two-thirds the federal funding.
Instead of asking which star supports which disease, we should ask: How many people have the disease? How serious is the condition? Does science suggest the likelihood of progress against the disease? There are a lot of legitimate questions to ask. From a public health perspective, "Which entertainer wants money for this disease?" is not one of them.
There are 350,000 to 500,000 Americans who have been diagnosed with multiple sclerosis, according to the Multiple Sclerosis Foundation. Yet, with lower-tier celebrity spokesmen such as David Lander (Squiggy from Laverne and Shirley), is this disease getting its fare share? There have been real strides in the treatment of this not-so-rare condition and scientists are optimistic about further progress, given adequate resources. But perhaps precious funding for MS is being diverted towards conditions with little hope for improved treatment but with the backing of bigger celebrities. As Dr. Caplan explains, "the science isn't always where the celebrities are." Members of Congress, in contrast, do like to be where the celebrities are.
Instead of funding rare genetic diseases that science barely understands, our resources whether public or private would be better spent on research for conditions such as mental illness or incontinence, which are widespread, burdensome, and undertreated. Yet it is difficult to find a celebrity to volunteer on behalf of such stigmatized conditions.
So will Congress heed Julia Roberts' call? Jonathan Karl thinks so. "I don't think the grumpy appropriators who, by the way, seemed almost moved to tears by the story Roberts told about a girl affected with Rett syndrome will be able to say no to this Hollywood star," said CNN's Washington correspondent.
We don't let musicians write the farm bill. Even the most famous linebackers don't have much say in national defense. Movie stars should not set our public health priorities.
