Think The ALS Ice Bucket Challenge Is Stupid? You're Wrong.

The Internet is alight with the Ice Bucket Challenge, a silly joke that’s being shared on social media by billionaires. Facebook founder Mark Zuckerberg dumped a bucket of ice on his head. He was followed by Microsoft founder Bill Gates, who, in a playful video, built a contraption to do the dumping, and Sue Desmond-Hellmann, the drug development guru and chief executive of the Gates Foundation.

In case you’ve been hiding in a Martian dry ice gully, the reason all these smart people are chilling their brains is not some new health fad but to raise awareness for amyotrophic lateral sclerosis (ALS), the lethal neurodegenerative disorder also known as Lou Gehrig’s disease. The original idea was that when the gauntlet was thrown down in the ice bucket challenge, you either need to give $100 to ALS or dump ice water on your head. Most people seem to be opting to both donate and get soaked, posting the videos on social media.

A big Internet meme like this naturally brings out the contrarians. But they’re wrong. The Ice Bucket Challenge is awesome. Here are three reasons why.

#1: It raises money for ALS

One of the first ice-bucket-belittlers was Will Oremus at Slate. Oremus argues, fairly convincingly, that the ice bucket challenge initially had nothing to do with ALS (fair enough, but so what?) and then goes on to say that it seems unlikely that the campaign is actually increasing the amount of money being given to ALS – people are probably posting videos, but not donating.

Oremus wrote:

“Yet it’s hard to shake the feeling that, for most of the people posting ice bucket videos of themselves on Facebook, Vine, and Instagram, the charity part remains a postscript. Remember, the way the challenge is set up, the ice-drenching is the alternative to contributing actual money. Some of the people issuing the challenges have tweaked the rules by asking people to contribute $10 even if they do soak themselves. Even so, a lot of the participants are probably spending more money on bagged ice than on ALS research.

As for “raising awareness,” few of the videos I’ve seen contain any substantive information about the disease, why the money is needed, or how it will be used. More than anything else, the ice bucket videos feel like an exercise in raising awareness of one’s own zaniness, altruism, and/or attractiveness in a wet T-shirt.”

Very catchy, very catty, Will. But the ALS Association has since said that it has raised $15.6 million as a result of the challenge, nine times what it normally raises in the same time frame. Another ALS charity, Project ALS, told the Washington Post that its donations were 50 times normal. ALS TDI, another ALS charity, says that has raised $580,000 since the beginning of August, 10 times what it normally receives.

#2: It encourages people to donate to charity in general.

So people are donating to ALS. The next argument among naysayers is that charity is a kind of zero sum game, and that money actually might be wasted if people invest based on internet memes. This argument was made most memorably by William McAskill, a moral philosopher, on Quartz.

McAskill wrote:

“The key problem is funding cannibalism. That $3 million in donations doesn’t appear out of a vacuum. Because people on average are limited in how much they’re willing to donate to good causes, if someone donates $100 to the ALS Association, he or she will likely donate less to other charities.

This isn’t just speculation. Research from my own non-profit, which raises money for the most effective global poverty charities, has found that, for every $1 we raise, 50¢ would have been donated anyway. Given our fundraising model, which asks for commitments much larger than the amount people typically donate, we have reason to think that this is a lower proportion than is typical for fundraising drives. So, because of the $3 million that the ALS Association has received, I’d bet that much more than $1.5 million has been lost by other charities.”

But McAskill’s protest is wrong on its face. First, there is 50% more money being given to charity than there would have been previously among this group of donors. And although McAskill fears that there is money and attention being taken away from other charities, it’s equally likely that the result will be to cause those charities to find their own, effective promotion techniques to compete. This is likely to result in even more money being raised for good causes.

McAskill also worries that if the ALS Association is less than half as effective as other charities at creating positive outcomes from the money, then the money it’s “stealing” from other charities is wasted. But that doesn’t seem to be true. At the very least, CharityNavigator gives the ALS Association a high rating. If we only wanted to invest in surefire charities, we’d never invest in any medical research.

#3: The Ice Bucket Challenge Is Raising Enough Money To Matter

The most galling bit of shade being tossed at the ice bucket challenge is that for all the noise it’s generating, it’s useless. This comes from Ezekiel Emanuel, chairman of Medical Ethics & Health Policy at the University of Pennsylvania, on Bloomberg TV. And honestly, Zeke should know better.

He said:

“Right. I don’t want to pour ice on this whole thing, but one needs to put this all in context. As an example, social media and viral marketing this is amazing. As an example of transforming biomedical research and Lou Gehrig’s disease one needs to be a bit more hesitant and skeptical. I have some very dear, dear, dear friends who a spouse and father died of ALS. So and it is a horrible way to die and it is a disease in great need of interventions that work.

So but there’s a long road to go. And $13 million is very unlikely to be transformative. We need to put this in a much larger context, the National Institutes of Health, which funds a lot of basic research in this country, over $30 billion per year. So $13 million is 0.05 percent of that kind of investment. This is very unlikely to be transformative.”

Sure, if you compare it to the entire budget of the National Institutes of Health. But Rob Goldstein, the chief executive of ALS TDI, tells me that the entire amount spent annually on ALS by the feds and charitable organizations like his is $80 million. Against that background, a sum that looks likely to exceed $20 million starts to look significant.

Beyond that, we’ve seen in the world of disease charities that small amounts of money can have a huge impact if they are invested in the right way. To understand why, you have to think like a drug executive. You might believe, for instance, that a drug for ALS is too much of a long-shot to develop. But if a charity defrays all or part of the cost of keeping the project going, it becomes a free bet.

This is exactly how Kalydeco, a cystic fibrosis drug sold by Vertex Pharmaceuticals, was developed using funds from the Cystic Fibrosis Foundation. There are complaints now that after taking money to develop the drug, Vertex still charges more than $300,000 per patient per year for it, but there is no doubting either Kalydeco’s effectiveness for those with a particular genetic mutation or the effectiveness of funding drug development in this way. The Michael J. Fox Foundation has used similar principles in putting Parkinson’s disease back on the biotech map.

I’d bet that an organization like ALS TDI, which works much like a biotech company, spending all the money it brings in, would be the best way to get bang for your charitable buck. But there’s no reason to doubt that the money could really have an impact, whichever of these organizations people are donating to. And, honestly, I’d think giving money to a program that backs ALS research is a welcome change from disease foundations that devote much of their money to awareness or screening programs that may actually have less of an impact.

I think the people trying to throw cold water on the Ice Bucket Challenge should stop. It’s great that ALS charities are getting these donations.

 

Source: Matthew Herper, August 19 2014, www.forbes.com

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