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The Unhealthy Relationship Between Celebrities and Public Health Funding

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    The Unhealthy Relationship Between Celebrities and Public Health Funding

    The Unhealthy Relationship Between Celebrities and Public Health Funding

    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 &mdash better &mdash 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 &mdash 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 &mdash whether public or private &mdash 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 &mdash who, by the way, seemed almost moved to tears by the story Roberts told about a girl affected with Rett syndrome &mdash 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 message was edited by seneca on May 22, 2002 at 02:38 AM.]

    I think Christopher Reeve has always taken the approach of lobbying for increased NIH budgets for all kinds of research. The NIH research budget has nearly doubled in the last four or five years and it is quite natural for sci research to get more money along with everyone else. This reporter is being a bit unfair. I do agree that if more celebrities would take Reeve's approach and simply lobby for more funding for all of medical research, it would like be more persuasive with congress.


      I don't know Jeff Steier or the American Council on Health and Science but he is wrong with his facts and inappropriate with his views. He is not an expert on this subject and has an axe to grind.

      First, he or the reporter has gotten the numbers on spinal cord injury research wrong. Between 1995 and now, there has indeed been a $20 million increase from $48 to $68 million for spinal cord injury research. This is barely what one would expect from 3% inflation alone between 1995 and 2002, especially considering that the entire NIH budget more than doubled during this period. So, Steir and Arthur Caplan (I hope that Caplan was misquoted because I thought highly of him until I saw his quote) wrongly implied that somehow Christopher Reeve has sat on the balloon and it has sagged in favor of spinal cord injury. Likewise, the numbers on lupus is simply incorrect. There is an entire institute (NIAMS) that is doing $350 million of research on connective tissue disorders which will benefit lupus erythematosus. Our President just declared this decade to be the National Bone and Joint Decade. So, President Bush is not a celebrity?

      Second, I wonder why Jeff Stier is singling out Christopher Reeve and Michael J. Fox. I did not hear him complaining about many celebrities helping push the AIDS budget which went from less than $100 million in 1988 to $4 billion in 1998, an increase of over 40 times! Does he really think that this is not due to celebrities and based on scientific merit? How come he is not complaining about the fact that NIH is funding $5.5 billion on cancer research, an effort that is strongly supported by many celebrities. How about breast cancer and prostate cancer?

      Third, Jeff Stier seems to believe that NIH funding of research was based on scientific merit. Does he really think that AIDS research is that much better than neuroscience research that NIAID (which funds infectious and immune research) should receive $4 billion while NINDS (which funds neurological research) should get about $1.5 billion or NICHD (which funds child health research) should get $1.2 billion. NIH funding is in large part based on politics and public opinion of diseases.

      Finally, please read the following information about the American Council on Science and Health from in an article entitled: "A Rogues Gallery of Industry Front Groups and Anti-Environmental Think Tanks". The organization is headed by Elizabeth Whelan. Jeff Stier is the Associate Director. Despite the name of the organization, they do not represent scientists, clinicians, or consumers. They raised over $2.5 million in 1999, paying themselves hefty salaries (Whelan $223K, Stier $119K). They are funded by corporations, many of which have nothing to do with science, health, or consumers.



        Thanks for the links, Wise. As a farmer of wheat and soybeans and not apples, I did follow the Alar situation quite closely but the link now gives me a much better idea as to what went on back then. This is really extremely low quality reporting. And wow, the author is making mega bucks for sitting on a board of directors. Incredible. Bill


          I just noticed that the NINDS gets about a 8% increase for 2003 and NIAID gets about a 57% increase. And this guy is complaining about CR's lobbying??????

          I wonder how this budget was put together? Obviously, George Bush is no friend of CR!


            Bill, I wish that friendship with President Bush could have that kind on effect of government funding. However, funding is decided by Congress and the process is complex. Part of it is what the White House OMB submits to Congress as the initial budget; this budget is determined by various agency submissions to the OMB and the President has the final say on the priorities.

            Please note that President Clinton was not much of a friend of NIH during his first four years. Between 1992-1996, the White House annually submitted a "flat-line" budget for NIH with an increase just for inflation and Congress had to override the White House budget and add to the NIH budget every year. In 1997, the Senate passed a resolution to double NIH in 7 years, due largely to the pushing by Senators Arlen Spector and Tom Harkin who headed the Health and Human Services budget subcommittee. They have kept their word.

            Incidentally, Congress only mandates funding by institute. Within the institutes, the amount of funding really depends on the number and quality of applications coming in. At the present, most institutes at NIH are funding about 25% of grant applications. Institutes that are funding significantly lower percentages can argue for increase of their budget. On occasions, Congress may add a particular initiative to an institute. For example, Joan Samuelson was instrumental in getting Congress to give about $100 million to initiate Parkinson's Disease Centers. Likewise, several years ago, breast cancer was able to get about $300 million, moving it from the DOD to NIH.

            By the way, the increase in NIAIDS is for bioterrorism. That is a direct result of September 11. Congress decided to put a billion to bioterrorism research to soothe the fears of the American public. That increase was supposed to go to all the institutes. Sigh. Another bite out of the pie of research.