Commentary & Opinion
12:45 pm
Thu August 14, 2014

Sean Philpott: Taking The Icy Plunge (Or Not)

There's an epidemic that is sweeping this country. It's not Ebola, despite all of the hype and misinformation about that disease that has dominated the news in the past two weeks. Rather, I'm talking about the ice bucket challenge.

Anyone who has watched television in the last couple of weeks has seen this: newscasters, celebrities and athletes like Matt Lauer, Martha Stewart and Nick Swisher being doused with a bucket of ice water in the name of charity.

The goal of the ice bucket challenge is to raise money and awareness about amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease).  ALS is a neurodegenerative disease that affects nearly 30,000 Americans.

It primarily affects people in their mid-40s to mid-60s, and is characterized by an increasing loss of motor function. Initial symptoms include muscle weakness or slurred speech. As the disease progresses these symptoms become increasingly pronounced. Patients with ALS gradually lose the ability to walk, speak, eat and (eventually) breathe. They become slowly prisoners in their own bodies, fully aware but trapped in an increasingly uncooperative shell.

The root cause of the disease is still unknown, and there is no known cure. Treatments can slow the onset of symptoms, but most patients succumb to the disease rather quickly. The majority of people living with ALS die within 3-5 years of their initial diagnosis, although there are notable exceptions like famed physicist Stephen Hawking, who has lived with the disease for over 50 years.

The federal government spends about $60 million on ALS research. Private organizations like the ALS Association spend more, both to develop new treatments and to provide care for those affected by the disease. As a non-profit organization, however, the ALS Association depends on contributions from people like you and me, and that's where the ice bucket challenge comes in.

The challenge is simple. A person either donates $100 to the ALS Association or agrees to post a video of them getting doused with ice water on a social media site like Facebook (usually with a hash tag like #IceBucketChallenge or #StrikeOutALS). That person then challenges three of their friends to do the same: donate or get doused.

The campaign has been remarkable successful. In the past month, the ALS Association has raised over $1.5 million. Donations are up nearly a hundredfold since the campaign began. That's a good thing, so what I'm about to say is likely to be surprising and even a little upsetting to some.

I think the ice bucket challenge is a crock, and I want no part of it. To all my friends who have called me out on Facebook to participate, my answer is 'no'.

This isn't to say that I don't believe that ALS is a terrible disease. It is. I have seen the effects first hand, when the brother of a close friend contracted the disease. I have also donated to the ALS Association in memory of a former student's father, who died from complications related to ALS last year.

I am opposed to the ice bucket challenge for a number of reasons. First, I don't believe that it does anything to raise awareness of ALS in the long term.  Most of the videos that I have seen posted on Facebook, Vine and other social media sites say little to nothing about the disease and its impact on the families affected with ALS. They also don't discuss why monetary donations are desperately needed, where to donate to, or how the money will be used.

Second, I have a real problem with a fundraising campaign in which public humiliation or exhibitionism seems to be the primary goal, with donations to a charitable cause an afterthought. Consider the rules of the ice bucket challenge: you either film yourself getting doused with ice water or you donate $100 to a charity. Charitable donations are the consolation prize in this extortive game.

In fact, what most people don't realize is that the ice bucket challenge predates the ALS Association campaign. It was actually started as a game among pro athletes like golfer Greg Norman, with those who refused asked to donate to a charity of the challenger's choice. The original challenge was never about raising money or awareness of a charitable cause, and now we have thousands or millions of Americans who feel like they've contributed to ALS research without actually doing anything.

If you want to help those living with ALS, dunking a bucket of cold water over your head is not the way to do it. Rather, you should visit the websites of organizations like the ALS Association and learn more about the disease. You should donate money to the cause and encourage your friends and family to do the same (without subjecting them to hypothermia). You should write your Congressional representatives and encourage them to increase funding for ALS research. Finally, you should consider donating your time to help those with the disease and their families.

Save the ice for your drinks.

A public health researcher and ethicist by training, Dr. Sean Philpott is Director of Research Ethics for the Bioethics program at Union Graduate College-Icahn School of Medicine at Mount Sinai in Schenectady, New York.  He is also Acting Director of Union Graduate College's Center for Bioethics and Clinical Leadership, and Project Director of its Advanced Certificate Program for Research Ethics in Central and Eastern Europe.

The views expressed by commentators are solely those of the authors. They do not necessarily reflect the views of this station or its management.

 

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