Twenty years ago this month, the eyes of the nation’s lawmakers were focused on a witness at an otherwise bland hearing. As CNN’s Jonathan Karl reported, “I’ve never seen so many people crowd into an appropriations subcommittee hearing.”
Was it a discussion about how much money will go to education or pandemic preparedness? No, members of Congress and the media crowded to witness superstar Julia Roberts request $15 million of research funding for the rare, albeit serious, Rett syndrome. The International Rett Syndrome Association cites 3,000 U.S. cases of the neurological disorder, which prevents patients from communicating or controlling their body movements.
We all wish there were enough research money to cure or prevent Rett syndrome, as well as many other horrible diseases. But given a limited amount of dollars for research, we should spend that money wisely, getting the biggest bang for each public health buck.
According to Dr. Arthur Caplan, who was then the 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 because one disease has a pretty woman as an advocate?
To the detriment of society and public health, matters have only gotten worse in the last two decades. Celebrities, many of whom use their power for good, also do much harm. They not only distort our allocation of research funding but also discourage parents from vaccinating their children, garner undue attention for their most absurd personal grievances and hawk all sorts of potentially harmful magical supplements.
It’s easy to blame members of Congress for coming to hear (or see?) Julia Roberts, or CNN and NBC for giving her free airtime and more recently, TMZ and Buzzfeed for posting clickbait celebrity stories, but ultimately it is us, the consumers of this content, who have the power to vote with our remote controls and web browsers.
Nonetheless, it is worth calling out the media for even giving attention to the most non-newsworthy stories. Over the last few months, the Washington Post, NBC News and CNN were among the offenders, running headlines such as “Linda Evangelista files $50M lawsuit over disfiguring cosmetic treatment.” The former supermodel did indeed experience an unwanted side-effect of a CoolSculpting treatment. But there’s a wrinkle. Given that Evangelista would have been required to sign a waiver accepting the risk of the very side-effects she experienced, her $50 million lawsuit is, at best, a publicity stunt. And our country’s top news outlets play the role of the useful idiots.
It’s not just “earned media,” but paid media as well. Consider the constant ads on the Fox News Channel featuring former Arkansas governor Mike Huckabee promoting Relaxium Sleep, non-prescription natural sleep supplements. The non-prescription sleep elixir is, among other things, supposed to help you stay asleep at night. So if you wake at night because of a life-threatening but treatable medical condition like sleep apnea, you don’t even need to see a doctor. So much for the “risk-free” offer.
I’d like to blame the media, but ultimately, so long as consumers read these articles, let the Linda Evangelistas of the world have our attention or buy celebrity huckster’s products, we get what we deserve.
We don’t let musicians write the farm bill. Even the most famous linebackers don’t have much say in national defense. We should not give movie stars, models and washed-up politicians so much sway over our individual and public health decisions.
Originally published by Inside Sources. Republished with permission.
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