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Left out in the cold by the ice bucket fad

  • "Tonight Show" host Jimmy Fallon dumps a bucket of ice water over the head of actress Lindsay Lohan as she participates in the ALS Ice Bucket Challenge.

Americans are probably not unique in treating philanthropy as a sort of game, with the goal of making it go down painlessly.

The ice bucket challenge sweeping the nation — or at least Facebook and Twitter — is another example. It’s a system that includes credit card companies making a Christmastime donation every time you charge a purchase, or shoe companies sending a pair to Africa when you buy one for yourself, or your pledging money for every mile that someone else runs a charity race.

On the surface there’s nothing wrong with any of this, since every dollar donated means one dollar more. But deeper down, the ice bucket challenge illustrates why it’s a problem.

The challenge benefits the ALS Association, which supports research into the degenerative condition ALS — amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

As described by the association, the challenge “involves people getting doused with buckets of ice water on video, posting that video to social media, then nominating others to do the same, all in an effort to raise ALS awareness. Those who refuse to take the challenge are asked to make a donation to the ALS charity of their choice.” (The commonly suggested donation is $100.)

Plainly, there’s something of a perverse incentive here. Those pictured on Facebook or Twitter dousing themselves with ice water are ostensibly people who refused to donate.

But since dozens of celebrities have made videos of themselves getting doused — Matt Lauer, Mike Trout, Martha Stewart, etc. — we can assume that the principle has been turned around. The challenge has morphed into a device for increasing awareness and therefore fundraising for ALS research. It appears to be quite successful, since the association says it’s received $15.6 million in donations since July 29, compared with $1.8 million in the same period last year.

The first issue raised by the ice bucket challenge is whether this money is being put to its best use. That’s not a rap on the ALS Association, which gets good marks from the watchdog group Charity Navigator. Nor is it about whether ALS warrants this level of attention and charitable giving. It’s whether ALS warrants the attention, compared with other possible causes.

ALS certainly is a devastating condition for those who have it and for their families and caregivers. It’s almost invariably fatal, with most victims living two to five years after symptoms first appear, according to the Centers for Disease Control and Prevention. Researchers are still struggling to understand its causes.

But ALS is also a rare disease; the threshold specified in the federal Rare Disease Act of 2002 is a nationwide incidence of 200,000 patients. The CDC estimates the prevalence of ALS in the U.S. at about 12,000 people. The ALS Association says 30,000, but hasn’t responded to my inquiry about the discrepancy.


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