The ALS ice bucket challenge is tapering off, but the ALS Foundation is now $100 million richer. Here’s why the challenge still matters, even in its waning days – and why, if we’re lucky, the effects of the challenge won’t be going away.
“All good things must come to an end.” That’s an unfortunate fact of life. And only about two weeks after my friends poured a bucket of water over my head on a chilly Alaska evening, the ALS ice bucket challenge appears to be on the way out.
That decline was always to be expected. The nature of viral marketing is that it disappears as quickly as it appears; while the ALS Foundation is still pulling in nearly twice as much money in a day as it used to in a month, it’s also collecting half the daily receipts that it was just a week ago. A purposefully viral phenomenon was always going to tail off eventually, and even though the challenge has now made its way to the U.K., it nevertheless won’t have the same sort of cultural presence in September that it did in August.
What is the future of the ice bucket challenge, then? Where do we go from here?
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Most criticisms of the challenge seem to be directed at the fact that
a) Not that many people suffer from ALS, and there are more important diseases to fight – and research donations are rarely targeted properly. Funding ALS research takes donations away from other organizations.
b) Viral/“trendy” philanthropy isn’t done for the right reasons, and is therefore unworthy of our attention. And regardless of the reasons, short-term philanthropy doesn’t generate sustainable research.
c) California’s in a water crisis, you know.
I’m not going to lie – I just threw the last one in there. I’ve heard it before, I get it, and as a Californian I do sympathize with it (although you could just donate and skip the water part). But the other issues that have been raised are all worth addressing.
Why ALS? It’s absolutely true that if the point of healthcare donations and funding is to provide the greatest good for the greatest number, then ALS should not be our number-one priority. Indeed, the National Institutes of Health (NIH) only allocated $40 million to ALS research this year from a $30.1 billion budget. But the chart I linked to above shows that we’ve never had a very strong grasp of what scientific research, from a mortality standpoint, “needs.” Two “wrongs” don’t make a right, to be sure, but here’s the thing: The ice bucket challenge, and in particular the way it’s been popularized, has potential for more than just ALS research.
Whether the challenge is for ALS or for another disease is (mostly) beyond the point. The ice bucket phenomenon is a short-term one, and we don’t know what the long-term effects will be for ALS research. The challenge has raised $100 million in a month – that’s marvelous, isn’t it? Well, we can look at it two different ways. The first is that since the NIH only devotes $40 million a year to ALS research, the challenge has been transformative. But it’s fair to say that since this is a short-term phenomenon, we’re likely not going to see the sort of long-term research commitments that scientists will probably need in order to make legitimate breakthroughs. Experiments funded by this windfall may spark something incredible, but the odds are against it.
Complaining about ALS donations otherwise going to cancer research misses the point. Ultimately, everyone benefits when a disease can be cured. Certain aspects of healthcare, including healthcare funding and preventive medicine, do need to be viewed at the community level. This is true for ALS and even more so for contagious diseases where herd immunity is paramount.
When it comes to research dollars, even if you don’t necessarily believe in social healthcare, we shouldn’t be fighting over how to divide the pie – we need to expand the pie. Breast cancer gets the lion’s share of donations when heart disease kills far more, but that doesn’t mean that breast cancer funding should be reduced: It means that heart disease research should be increased. As such, we have to look at research a different way. $100 million isn’t that much in the grand scheme of scientific healthcare research, not when the pharmaceutical industry and the NIH can spend billions developing a single drug.
The ice bucket challenge drives home this key fact: By check and by ballot, the true transformation in healthcare will have to come from us.
The genius of the ALS ice bucket challenge is that it shows an understanding of how humans really think. We focus our efforts on what is personal to us. We fear that which we don’t understand, to be sure, but we may well fear even more that which we see every day. Nobody’s going to change that, and I would argue that since personal philanthropy is ultimately an outgrowth of love, changing that attitude wouldn’t necessarily be a good thing. Rather, we can take advantage of it.
What’s so incredible about the ice bucket challenge is that it made a disease that was previously distant – confined in the public imagination to Hawking, Gehrig and nobody else – a general phenomenon. If only for a short period of time, the ice bucket challenge redefined how we saw the disease: as an issue that concerned everyone and a challenge that everybody could help solve. If we are trying to build long-term support for scientific research, both from crowdfunding and increasing government funding, then community activities like the ice bucket challenge are the investments of our time and energy that we will have to make. ALS may not happen to you (in fact, it most likely won’t), but it still needs to matter to you.
The only long-term way to improve healthcare funding is to build a culture that values breakthroughs in health care, even when immediate advances are not immediately visible. If ALS only takes away donations from other health causes, the campaign won’t really be a success; if it gets people enthusiastic about research in general, then everybody will benefit. To build a larger culture where people actively demand research funding and real results, we have to redefine health research as a community aspiration. Say what you will about the ice bucket challenge, but it has given people the feeling of being stakeholders in this struggle. Crowdfunding is probably not a long-term solution to the research funding challenge, and ALS may not be the big thing in even a few weeks, but when you’re talking about tangible investments in an intangible solution (i.e. we don’t actually have a cure yet), we need to be creative in order to rally people who otherwise wouldn’t see any point.
From public school funding to Navy patrols in the Strait of Malacca, humans consistently fail to look to the long term: We see the costs, but we don’t easily see the benefits. The crowdfunding (to use an anachronism) for the March of Dimes only took off after polio threatened to cripple a generation of American children. First and foremost, we need to change our attitudes – we don’t evaluate the expected value of things whose effects we cannot see. The ice bucket challenge may go, but we will still need to make future research sustainable.
The real potential of the ALS ice bucket challenge lies 10 or 20 years from now. But if the spirit of the challenge is going to be maintained in that time, we need to realize that we have a stake in maintaining our leadership in the scientific arena. We should demand accountability, and ultimately we should demand results – but there’s no better exemplar of the tragedy of the commons than neglecting our need to healthfully live our lives.
Contact Winston Shi at [email protected].