Click here to see ACSH's Jeff Stier on CNN's American Morning August 10, 2005, discussing how celebrities distort science policy.Jeff Stier Says Research Money Should Be Allocated on the Merits, not the Quality of Star a Cause Attracts
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.
Jeff Stier is associate director of the American Council on Science and Health. This article is reprinted with the permission of the New York Sun.
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May 23, 2002 My ACSH colleague Jeff Stier is right to be concerned about precious research dollars being allocated because of the influence of celebrities rather than science, but what about cases in which the celebrities help promote sound science and highly rational expenditures? Take, for example, Michael J. Fox and Muhammad Ali, who appealed to Congress on Wednesday for more funding for Parkinson's research. If cell-cloning remains legal, research on Parkinson's may have significant pay-offs in the near future. Fox and Ali, by reminding people of the great strides that may soon be made in this area, may aid not only Parkinson's sufferers such as themselves but biotech research in general. Further, since they have Parkinson's, one might argue that, in some sense, they really do know this disease better than a detached panel of experts would. Maybe a combination of charisma, good science, and patient testimony isn't such a bad thing. Gilbert Ross, M.D. Stier replies: It's true that there may be specific instances in which celebrity testimony steers funding in the right direction at the right time. Unfortunately, those exceptional cases do not change the fact that charismatic celebrities do not, as a general rule, know best how to allocate research dollars. Indeed, one might even question whether it is wise for patients with a specific disease to judge the costs and benefits of investing in research to cure their own diseases which will be done at the expense of (non-celebrity) patients with different diseases. Christopher Reeve became an impassioned advocate for spinal injury research after he became paralyzed, and that's perfectly understandable, but does anyone believe that he became an advocate after doing a disinterested, rational analysis of the current state of all medical research, analysis that led him to the conclusion that spinal injury research is objectively the best investment of our research dollars? Dr. Ross might argue that Reeve's motives are irrelevant, but the truth is that we want funding decisions to be made on the basis of rational calculations, not appeals to emotion, born of personal crusades. Sometimes the celebrities will get it right, but they won't get it right often enough or reliably enough to justify favoring their input over that of countless hard-working, better-informed scientists scientists who know which research offers the greatest hope of significant advancement from a new influx of funding. We wouldn't want the influence of individual economists to be proportional to their good looks nor the acceptance of Einstein's theory of relativity to hinge on his public speaking skills, not even if the world's best economist at the moment happens to be drop-dead gorgeous and Einstein had a gift for the one-liner. Over the long term, expertise is a better guide than celebrity and we should not get into the habit of pretending otherwise. Jeff Stier, Esq. May 28, 2002 I'm thankful that celebrities have more effect on research money than ACSH because morality and political rhetoric are definitely not what I want to see research money allocation based on. Too bad you don't base your stances on science! B. Wemple August 11, 2002 This is in regard to your article concerning Julia Roberts and Rett Syndrome. I find it very offensive that "you," a person who has probably never met a person with Rett Syndrome, decide how "your" money is spent. It is people like you who make "having a disability" so disabling. How dare you decide who gets funding and who doesn't? Since when were you put on the pedestal of God? Funding for such programs shouldn't mean the support of some programs over others. I'm not saying my child deserves more than others, but are we only going to acknowledge those diseases with large numbers of victims? Cancer this year, and lung disease next? Get real. Also, you mention spinal cord injuries. Are you so shallow you don't remember Christopher Reeve? Even Superman asks for money! Tim Smithey January 21, 2003 As associate director of the American Council on Science and Health, you have a wonderful position from which to effect perception and opinion. In my own speech in Freedom Plaza after the March on D.C. for Hepatitis Awareness, I took Hollywood and Sharon Stone, in particular, to task for her incessant radio ads begging Americans for more money when the NIH is now spending $6,000 per patient on AIDS research versus, for example, $75 on each diabetic (though diabetes kills more Americans than AIDS and breast cancer combined every year), $161 on each Alzheimer's patient, and $25 on each hep C patient, even though annual AIDS deaths have dropped to an incredibly low 8,963 in the USA (2001, latest reporting period) and 164 in California in 2002! Heart disease kills more than 700,000 American each year, yet heart disease receives over a half billion fewer research dollars than AIDS. My speech last June, which has older figures, is online, as is ABC News correspondent John Stossel's piece on this issue: http://www.proratenih.com/video/speech.htm The statistics given above regarding exorbitant monies spent per patient on AIDS research don't include the billions spent by the pharmaceutical companies, the fifty states, and the millions raised by Hollywood and by well-intentioned citizens who are uninformed of the gross unfairness in NIH funding and do not realize there is no AIDS "crisis" in the USA (as evidenced by the 99% decrease in AIDS deaths in California and over 80% reduction in the country). My group, ProrateNIH, urges a policy of proration of NIH research monies based on a disease's mortality rate. That would immediately take out political correctness and Hollywood input and force an equitable solution to the outrageous inequities in funding. Thank you for your efforts to bring sanity to NIH policy! Warm Regards, Dr. Richard Darling |