A creative campaign to raise attention and money for ALS (Amyotrophic lateral sclerosis) has circulated across the web and through virtually every social media channel. You’ve seen a friend or a celebrity post a video of themselves dumping ice water on his own head, announcing a donation to research on ALS, and challenging others–by name–to do the same. It’s generated an enormous amount of money for research on ALS, by one estimate $42 million, more than twenty times the money raised over the same time period last year.
ALS is a terrible disease. There’s no cure, limited understanding, limited treatments, and not enough research, and a terrible decline for those diagnosed which doesn’t last very long before death. Because the population affected is so small–relative to other health conditions–there’s just not much private sector interest in investing in research. But the ice bucket provides an odd marketing redress. Is it just wonderful that a viral marketing campaign took off and produced a windfall?
Absolutely, but not really. Research on ALS is drastically underfunded, but that’s true for just about every disease or condition you can imagine. Government funded scientific research has stagnated since the George W. Bush administration, and ongoing battles about taxes and the deficit have kept federal investment in science very low. Effective political advocacy slices bigger shares of this limited pool of funds to selected conditions like AIDS and breast cancer. Biotech and drug companies invest in research to develop products they think they can sell profitably–ideally to large markets. As the rate of diabetes increases in America, it becomes a more attractive research and development area for the drug industry. (Treatable but incurable? That’s maybe fifty years of drug purchases per patient!)
Non-profits raise and spend money to fill in where government and industry falter, and they dedicate a great deal of money and effort to keep the dollars flowing. This viral ice bucket twist has been incredibly successful–for now–but it’s hard to imagine it morphing into an organized annual event–like an AIDS Walk, MDA (once muscular dystrophy) telethon, or Breast Cancer Run for a Cure.
The fundraising calendar gets crowded, and you really can’t imagine racing and fundraising for every worthy cause. Causes of all sorts, including nonprofits concerned with diseases, have to innovate and find some new way to break the clutter of fundraising appeals and regularize and stabilize their income. Even then, funding is cyclical, as people and foundations are more flush and more generous when the economy and the stock market are stronger.
Research on ALS is critical and funding it completely worthwhile. But I don’t have a way to compare the value of funding ALS with funding research on AIDS, Breast Cancer, Celiac Disease, Depression, Ebola….all the way through the alphabet. Should funding be based on the state of the science?, the number of people affected?, the likely development of knowledge that helps with other diseases? And what about funding scientific research on disease at the expense of action on education or poverty? I don’t know the answers on this stuff, and would distrust any flip opinion.
I am sure, however, that I don’t trust the wisdom of the charity market on these matters. Nonprofits hire fundraisers who build careers moving across charitable causes. The quality of the campaign is, I fear, more important than the worthiness of the cause.