The #icebucketchallenge and funding in biomedical research

EDIT: Since writing this, updated donation figures have been posted, with the ASL Association now stating they have received $2.3M in donations since July 29th. While it is difficult to differentiate donations from people participating in the challenge who do not usually donate and yearly donations that may have been moved to coincide with the challenge, $2.3M is pretty close to the $2M I discuss here, so I believe my point still stands.

If you have a Facebook, it is very likely you've run into the #icebucketchallenge.

In essence, the viral fundraiser began when some high profile celebrities were challenged to either i) dump a bucket of ice water over themselves, or ii)  to donate $100 to charity, and then challenge others in the same way. While some of the early videos don't even mention charity (such as Martha Stewart's video above), currently the video trend has picked up a very specific focus on Amyotrophic lateral sclerosis (ALS), often using the #strikeoutALS hashtag and requesting donations be made to the ALS Association. As my younger brother Dylan challenged me yesterday, I thought I'd respond, but not by completing the challenge as described. While I agree that the challenge has made important, tangible contributions to awareness and fundraising, I think that many people are missing the bigger picture, and instead of raising awareness for ALS by dumping a bucket of ice on my head, I'm going to hopefully raise awareness about biomedical research funding in general, and why we need to do a lot more if we really care about saving and improving the lives of loved ones suffering from debilitating illness, including, but not limited to, ALS.

Science is an expensive enterprise. Using ALS as an example, the National Institutes of Health (NIH) reports that it provided $39M in funding to ALS related research in 2013. In comparison, more prevalent diseases  such as diabetes and cancer bring in $1B and $5.4B, respectively. At the rate of $5.4B a year, you might expect that we'd quickly find a cure for cancer. However, biomedical science is not a machine that intakes money and outputs cures. Science takes time and hard work on the part of hundreds of thousands of scientists. Not only does science take a lot of money, there's no guarantee of success within a given time frame - we can't simply say "cure ALS by Friday". For us to find a cure, whether it be a cure for cancer, diabetes, or ALS, we all need to make a large, long-term financial commitment to funding the research. 

That brings me to my main point. Awareness is important to biomedical science because if no one knows a disease exists, no once cares if research on the disease doesn't get adequate funding. If #icebucketchallenge has raised public awareness of ALS, and the public now believes it deserves more funding, what should be done? Should we all pour buckets of ice on our heads? Or alternatively, should we all forgo the showmanship and just donate?

If we wanted to increase the total research budget of ALS by just 5% of the NIH-funded budget for a single year, we would need to raise about $2M. $2M is a lot of money - it's actually over 10x what the ALS Association says it raised from the ice bucket challenge last week. While this might be possible if everyone involved donated, it doesn't appear that most do. Will the challenge stay strong at it's current donation rate for 9 more weeks? Even if we assume it does, what does that $2M do in science? Does an extra $2M cure a disease?

I have a pre-doctoral fellowship at the NIH through the Ruth L. Kirschstein National Research Service Award (NRSA) program, often referred to as an F31 fellowship. These highly competitive fellowships are intended to fund the training of young scientists who are in the process of completing their PhDs. The fellowship covers graduate school costs and provides a stipend, but does not cover the costs of any laboratory resources required to actually perform experiments (or in the case of computational scientists like myself, calculations). By the end of my fellowship, the NIH (specially the National Institute on Drug Abuse, NIDA) will have spent over $200K on my pre-doctoral training. This means that as of Friday, the ice bucket challenge has not even raised enough to fund one graduate student's training. Even if the viral fundraiser hit the $2M mark I described earlier, and spent it on paying for graduate students (who perform a majority of scientific labor), it would only fund about a dozen of them. While most graduate students would be more than happy to be funded thanks to the ice bucket challenge, you have to admit that it seems a bit underwhelming.

This might seem like I'm saying that no single person can impact medical research, ALS or otherwise. In a sense, I am saying that. However, this is where awareness comes into play. Like I said earlier, if the public isn't aware of a disease, the public doesn't care if the disease doesn't get adequate research funding. If those partaking in the ice bucket challenge really believe ALS deserves more funding, the best place to get that funding from is the NIH. ALS research currently received about 0.1% of the total 2014 NIH budget of $30.1B, a slight increase from the 2013 budget of $29.2B. If we want to increase funding for ALS, convincing the NIH that the public wants to increase that 0.1% might be the way to go. However, the current NIH budget is significantly less than the past budget from 2003 - 2012.

Take from http://www.aaas.org/news/senate-committee-nearly-meets-administration-request-nih

Science is currently in a funding crisis, and it's been quite the topic of discussion in many of the major scientific journals. Grants have become more competitive and payouts decreased, and this especially affects young scientists starting their careers. Because of the crisis, advocating for more money for ALS in specific may be difficult, because all of biomedical science is currently scrambling to obtain whatever resources they can find. In an age where biomedical science has provided humanity with countless cures and treatments, scientists are fighting for funding, and because so few scientists go into politics, we have little voice in Washington.

So what should you do? The situation seems impossible - perhaps all there is to do is to douce yourself in ice water. However, there is something can be done. Be vocal about your concerns regarding the country's funding for biomedical science, and make sure your representatives are vocal as well. Don't let the government continue to cut the NIH budget, slowing our progress towards cures. If we returned to pre-2009 NIH budgets, ALS would already gain over $2M in research funding, never mind the impact on other important biomedical research. Make a long-term commitment to advocating for biomedical research, and don't limit yourself to social media. While the Facebook page "I fucking love science" may have over 17M followers, NASA has continued to see significant budget cuts. If we want to keep working towards a cure for ALS (or any other disease), it will take much more than hashtags and ice buckets, but that doesn't mean we can't all play our part.