Last month, Facebook newsfeeds were inundated with videos of friends pouring buckets of ice water over their heads. Beginning in July, this very strange piece of performance art blossomed into the full-blown explosion of social media fueled fundraising for the ALS Association. Friends, family, celebrities, businesses and more joined in the effort, and the ALS Ice Bucket Challenge became an unexpected sensation. By August, the ALS Association had raised over $70 million in donations.
So what is the ALS Association going to do with this extra money? Last year over the same time period, they raised only $2.5 million. Unfortunately, the association only has a few options, and none of them is ideal. They could use all of the money to markedly increase research funding immediately, but since scientific endeavors often take decades to complete, this would be shortsighted. If they wanted to dole out the funds slowly, most of the money will just sit unused in an account. As strange as it sounds, the ALS Association simply has too much money, and this kind of massive fundraising can often have starkly negative repercussions.
The truth is, donating to foundations that focus on researching a single disease is remarkably inefficient. Medical research is extraordinarily vast and complex, with diseases that vary in their impact on public health, prevalence, mortality and treatment options, and research grants need to be allocated appropriately. With finite resources available, providing research funds solely on the basis of the marketing success of a private foundation will almost certainly lead to improper distribution.
Importantly, we already have a much better system. The National Institutes of Health is the largest supporter of biomedical research in this country. Although it is far from perfect, it allocates these research funds, some $30 billion annually, on the basis of scientific merit and disease impact. If we care about advancing medical care through scientific discovery, supporting the NIH would be the best way to do it.
But even if the money was effectively spent toward ALS research, it represents money that will now not go toward other causes. And millions have exhausted energy and time in raising money for ALS instead of other pressing medical or humanitarian causes.
But what about the goal to raise awareness for ALS? It certainly has done this, but it is an empty achievement. ALS is not a preventable disease, and knowledge of it will certainly not impact its occurrence. Spreading HIV and AIDS awareness can serve to improve safe sex practices and reduce stigma. Improving cervical cancer awareness can improve early detection and decrease mortality in women. But the only information in the ice bucket videos is that ALS is a terrible disease, and there is little we can do about it.
Moreover, even knowledge itself has a cost, and disease-specific advocacy spawns a fabricated landscape of public health in the United States. The two greatest killers in this country are heart disease and cancer, but few can name any of the others on the list. Have you ever heard of chronic lower respiratory diseases? It sounds relatively obscure, but it is the third leading cause of death in the United States. It is a shame that these diseases that kill more than 140,000 per year in the United States are less well known than ALS, which does not even make the list among the top 100 causes of death.
That isn’t to say that funding the research of ALS won’t be useful. ALS is a disease with more questions than answers. Even its name, “amyotrophic lateral sclerosis,” is composed of three words that take at least a year of medical school to truly understand. And the only way we can ever begin to treat ALS through funding both basic science researchers and clinical investigators is to first understand all the minute processes that occur within our cells. But ultimately, we cannot forget that this very sentiment applies to nearly every disease, many of which have a much greater need for research money.
Perhaps you are still unconvinced. In that case, the next time a viral donor campaign makes the rounds, simply consider donating to another foundation or cause. For example, mental illness research, specifically depression and suicide, is terribly underfunded. There are plenty of charitable causes you can support, but just make sure you do not forget to support the largest medical charity of them all, the NIH.