MS Patient, Ph.D.: Lightning (and the Ice Bucket Challenge) Doesn’t Strike Twice

In the past month, my Facebook feed has been full of videos of friends dropping buckets of ice water on themselves to raise awareness about amyotrophic lateral sclerosis (ALS). Commonly known as Lou Gehrig’s disease, ALS is a progressive neurodegenerative disease that attacks and kills neurons in the brain and spinal cord, causing paralysis and eventual death. The 1-second paralyzing effect that the ice water has on people is supposed to be an analogy for what it’s like having this disease. Whatever the reason, it has been a very effective fundraising tool. While this campaign wasn’t started by the ALS Association (ALSA), as of August 29 they have received over $100 million in donations, 35 times more than during the same time period last year and with 3 million new donors.

ALS researchers are probably frantically typing up grant requests—that’s a lot of money to go around! Especially if you compare this amount to what is given to ALS researchers as part of the National Institutes of Health (NIH) budget. In 2013, just $39 million was appropriated for ALS research, $8 million less than in 2010.

So what was raised in the last month is actually a substantial amount of research dollars, but of course the ALSA (like most similar associations) does not give 100% of its collected funds to research. In 2012, the ALSA reportedly contributed approximately 10% of the funds raised by the national office and its chapters toward research, which amounts to less than $7 million. (Depending on how you calculate the totals, this has also been reported as 28%, but the dollar amount toward research remains the same.)

Using a conservative estimate, $10 million of the money raised since July 29th will be going toward research if the percentages hold. Maybe it will be $28 million or even more (less money will have to be spent for fundraising efforts, for example), but I don’t really want to discuss how ALSA distributes its money here.

Unsurprisingly, I find myself drawing comparisons between MS and ALS. While neuroscience research into ALS might help MS research as well, there is a large difference in the target of the disease and its prognosis. ALS is also a lot rarer; it is estimated that 22,600 people live with ALS in the U.S., compared to approximately 400,000 people with MS. So, could we replicate this successful social media marketing campaign and raise even more money for MS research? Most likely not. A unique combination of elements made the ice bucket challenge go viral: funny videos that people could easily share on social media, targeting three specific friends to take the challenge, giving a short deadline to respond (usually 24 hours), and most importantly, something like it had never been done before. This last element is what makes it virtually impossible to replicate. Even if you changed the parameters a little bit, it wouldn’t have that novelty factor that makes people watch and take action. While there’s always a need for new fundraising efforts, you have to be creative and come up with a new strategy.

The major MS association in the U.S. is the National MS Society (NMSS), which is already doing really well in terms of raising funds. In 2012, they raised over $216 million, and about 20% of this amount, or $43 million, went toward research. This is a significant amount of research dollars; for comparison, the NIH awarded $112 million in grants for MS research in 2013 ($21 million less than in 2010). But what makes disease associations so helpful is not just the amount of money they give toward research but also the money that they give that directly or indirectly affects patients. The NMSS gave $65.4 million in 2012 for client and community services, or 30% of funds raised, and $33 million for public and professional education, or 15%. This forum also receives some funding from the NMSS, for example.

But most people taking part in the ice bucket challenge were doing so to support research into ALS. So, one final point that I want to return to is the total amount of money the NIH has available to distribute for research. The amount of research funding that may become available from the ice bucket challenge (using the conservative estimate) is about the same as the total of the NIH budget cuts for ALS research between 2010 and 2013. A seemingly small 5% cut in the NIH budget resulted in billions of research dollars vanishing. So, I posit that everyone’s time is better spent contacting their lawmakers to increase the NIH budget—and that will help not just one particular cause but research toward all diseases!

Read other MS Patient, Ph.D. blog posts.