The Horrifying Inadequacy of the ALS Ice Bucket Challenge

umass

The ALS Ice Bucket Challenge, like any internet phenomenon, has had its backlash and the inevitable backlash against the backlash.  But whether or not you like it, no one can deny that it’s one of the most effective fundraising campaigns in recent memory.

But at the end of the day, one horribly depressing fact makes it all seem like a heartwarming act of staggering futility:  The tens of millions of dollars raised by fundraising gimmicks like this are drops in the bucket (excuse the bad pun) compared to the tens of billions spent by the federal government on medical research.  By far the largest contributor to ALS research is normally the National Institutes of Health, a taxpayer-funded government agency which has lost 25% of its purchasing power over the last decade as an insatiable thirst for budget cuts has become the new normal on Capitol Hill.

As of this post, the ice bucket challenge has raised $70 million, which means that this year private ALS research funding will actually surpass public funding.  But the problem with internet phenomena is they die quickly.  Of course The ALS Association will probably receive some permanent bump from cultivating long-term donors, but no one expects this level of funding or even anything close to it to continue indefinitely.

Let’s say the ALS ice bucket challenge plateaus out after raising about $100 million.  Federal government funding for ALS research has declined from $59 million annually in 2010 to $40 million this year.  That would mean over five years, federal budget cuts completely wipe out the gains from all those ice buckets.  Unless the ALS Association can come up with an equally successful online fundraising campaign every five years, in the long run the future of ALS research looks pretty bleak.

Once you look not just at ALS, but the broader picture of countless deadly diseases the scientific community is simultaneously trying to combat, it becomes abundantly clear how impossible it is to adequately fund medical research through social media fundraising campaigns.  It’s difficult to imagine research on another disease having an equally popular viral marketing campaign at the same time—there’s simply limited space in our social media newsfeeds and our attention spans.  Even if every couple years, research on one particular disease saw a surge in a few tens of millions in funding from momentarily trending on social media, it will never be enough to make up for tens of billions in slashed federal funding for disease research as a whole.

The larger question we need to ask ourselves is:  How should we as a society be funding medical research?

As Republicans in Congress have forced billions in cuts to public medical research, far outstripping anything that can be raised from individual donors on the internet, one can only wonder:  What about the diseases who don’t have such a brilliant viral social media campaign?  Hell, what about ALS a year from now?  Are we moving towards a society where public priorities like curing diseases must rely on appealing to the whims of social media trends, competing for our short attention spans in the jungle of the internet by coming up with increasingly flashy ways to raise money?  Are we becoming a society where charities must devote enormous resources to trying to come up with the next viral video or trending hashtag to fill the gap of services the government should be providing?  A society where resources are distributed not based on scientific expertise, but based on which cause has the best marketing campaign?

Government is and always will be more effective at raising money to cure diseases than the internet is.  Tens of millions of dollars for ALS, which took a social media campaign of one-in-a-million success, could be financed by literally pennies added to an average American’s taxes.

But we don’t like this because taxes mean coercion and coercion means controversy.  If I personally don’t want to contribute a few cents every year in my taxes to research ALS, should I be forced to?

The answer is yes: this is what democracy is for.

As a society we can collectively decide some priorities are too important to leave charities scrambling to scrap together resources, and we can democratically choose to raise much larger sums of money through taxing ourselves to fund public goods like scientific research.  We can adjust the amount people are required to contribute based on their income, so CEOs give more than janitors.  We can have scientists, public health experts, and health economists make decisions about where to spend that money so that even if I have no idea what ALS is (I didn’t before the ice bucket challenge) some small portion of my income is still directed to finding a cure.

We can get serious about curing and preventing disease, ending poverty, improving education, caring for the elderly, keeping our air and water clean.  But only if we’re willing to do the hard thing.  If we’re willing to say to people: “I don’t care if you don’t know what ALS is.  I don’t care if even if you did know, you wouldn’t contribute 50 cents a year to cure it.  You can’t get out of this by dumping an ice bucket on your head.  Those of us who do care outvote you.”

The ALS Association is doing a great thing, but they are hopelessly outmatched by the callousness and political power of the budget-slashers in Washington.  We will never, ever, ever be able to give medical researchers the resources they deserve, no matter how many internet fundraising campaigns we have, unless we recognize the politics of this issue and take a stand against those who would gut medical research in order to pay less taxes, who place private profits over public good.  What we need is not fleeting interest from the American public to string together temporary private dollars for the latest cause.  What we need is a commitment to using democracy to achieve our goals.  Democracy means controversy, democracy means conflict, but democracy is the way to create true lasting systemic change.

 

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3 comments

  1. Jamie McGonnigal

    You base your claim on the idea that ALSA exists primarily as a research organization and that’s simply not true. Of course they’re not going to raise the billions cut from NIH budgets, but research is far from their sole purpose. More than half of their budget goes to direct services for those living with ALS and their families, and to education about ALS. I can’t agree with you more on the premise of your point that we need that money back into research, but the ice bucket challenge has been anything but inadequate for these families.

  2. ahwillia

    This is a great point, and I’m glad that its being made (both here and elsewhere on the internet). However, nobody seems to be talking about senator Tom Harkin’s recently proposed “Accelerate Biomedical Research Act”, which aims to re-establish the purchasing power the NIH had in 2003. Right now, the bill has been sent to the Senate budget committee, and 7 of the 20 senators (some republicans, some democrats) have already taken the ice bucket challenge. If the American people pay attention to this fact, this would put strong pressure on Congress to push this bill forward.

    So I applaud the fact that you are bringing attention to the deficiencies in the NIH budget. But you should also do something about it! If we can raise millions of dollars in donations, surely we can get people to call their representatives, or upload videos dumping ice on their heads before calling out members of the budget committee.

  3. Dion Hansen

    When you mention coercion, don’t forget to include the ice bucket challenge itself in that category. I heard about the challenge weeks ago, and immediately resented the implication that I must participate. You also make some good points about funding medical research via tax revenue, and it is a worthwhile use of taxpayer money, as is any expenditure that contributes to improving the general wellbeing of the taxed society.

    What I wish to see tax revenue being used for is infrastructure development and maintenance so another freeway overpass doesn’t drop into a river and drown families, or the removal of the defunct dam a few miles upstream that is obstructing the natural supply of sand to local beaches, or a year-round homeless shelter and rehabilitation center.

    What I most certainly do NOT want to see tax revenue used for is subsidies to ANY industry or social segment to support artificial economies of operation or profit margins. I don’t want to see tax revenue being sent to foreign nations that will never identify or ally with the donor nation, and that cannot sustain their own populations because of the irrepressible greed of those in the government of those nations. I don’t want to see tax revenue forfeited by means of unnecessary tax breaks or dodges to monstrous multi-national corporations who have bribed their way to near-omnipotence.

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