The cost of sustaining vital research on brain diseases may be more than we’re willing to pay, but less than we imagine.
By now, you’ve likely either participated in the ALS ice bucket challenge or you know someone who has, even if it’s only your favorite celebrity. It’s safe to say that it’s one of the most successful viral fundraising efforts for a neurodegenerative disease, perhaps ever. Over $100 million has been raised as of Aug. 29th to support research against Amyotrophic Lateral Sclerosis, a dread disease also commonly called “Lou Gehrig’s”. The disease almost invariably kills all who receive the diagnosis, trapping those suffering from it inside a body that no longer responds. The disease robs the victim of movement through death of key motorneurons, eventually extinguishing the neurons necessary to operate the diaphragm that powers the lungs.
Apart from a goofy way to turn fundraising into a viral meme, the challenge has accomplished a lot of really good objectives. It’s united people across the political spectrum in an effort to raise tremendous sums of money for the ALS association – including Barack Obama (who donated but was prohibited by federal rules from dousing himself) and Mitt Romney (who went for it suited). The meme-like quality of the challenge seems to at once hold the horror of the disease at arm’s length, while providing a personal connection to the giving, even in those not directly touched by the disease. At the same time, there are challenge videos by those directly affected by ALS that do the opposite – by looking it square in the eye in a way that is both moving and informative.
The enormity of the success of the ice bucket challenge is staggering: the amount raised is over double the amount allocated for ALS research by the National Institutes of Health this past year ($40 million), and leaps well beyond the $2.7 million raised by the ALS association during a similar period last year. So it raises the question: Why can’t we just “challenge” our way out of everything? Or put another way, why are things like ice bucket challenges necessary?
Federally funded research is hurting. For example, federal investment in the National Institutes of Health isn’t even keeping pace with inflation. At a time when the public is threatened, not only with ALS, but other uniquely terrible diseases that affect millions more people, our government is spending less to combat them – about 20 percent less in inflation adjusted dollars than in 2003. Even the funding provided for government sponsored research for ALS has been cut $4 million (in unadjusted dollars) since 2011 (see chart).
Why is government important in this context? Critics of federally funded research often point out that pharmaceutical companies will step in and develop new treatments and cures. And a few companies are working on drugs that may delay the progression of ALS: including Biogen Idec, Sanofi, Avinir, Isis and Bristol-Myers Squibb. But it’s important to continue to search for new mechanistic insights as well as focusing down on developing specific drugs, which has a high rate of failure.
Federal research does the heavy lifting that big Pharma often can’t or won’t do because companies can’t easily reconcile development with a purely economic calculation involving the numbers of people affected. And unlike the pharmaceutical model of drug testing and target identification, federally funded research emphasizes discovery of the mechanisms underlying disease. Often, it’s the identification of key mechanisms by federally funded research that leads to the discovery of drugs that target it.
Decisions driven by economics are not always humane. But that’s the thing the ice bucket challenge has shown us – we can choose to be humane.
The challenge phenomenon is lightning in a bottle – and those battling the disease deserve every penny that is being raised this year, even though it isn’t yet clear how the money will be spent. But they also deserve something more than this: because a world where our health depends on the fickle nature of viral fundraising risks creating more losers than winners.
That’s why my tweak to the challenge would be this: for every donation to support ALS there would also be an email or phone call to your member of congress to support expanding the budget of NIH and NSF. We need a sustainable scientific research enterprise that can vigorously pursue treatments and cures long after the excitement of the challenge is over.
What would a sustainable national research effort cost you? For every dollar in taxes, right now the investment in biomedical research is less than a penny. For someone with an income of $90,000 the estimated federal tax burden would be somewhere around $7,500. That one penny for every tax dollar means that your current rate of funding for health related research – which benefits all diseases – is somewhere around $75 – much less than the amount many are freely giving right now for the ice bucket challenge.
Let’s think about what simply raising that amount to $120 would mean. To you, it would mean giving a little more in taxes than many are giving now, but to only one disease. And for that extra investment, you’d not only support ALS funding but sustainable levels of research funding for Alzheimer’s and dementia, cancer, epilepsy, substance abuse and Parkinson’s – basically every disease that affects you and those you love. The funding would directly increase the numbers of excellent research program grants currently being awarded to scientists to find treatments and cures. It would rescue the biomedical enterprise from the slim funding margins that threaten the future of biomedicine by driving away young would-be scientists to more stable careers. When biomedical science is diminished, so too will be the treatments on which you may someday depend.
Is $120 a lot to ask? For some in congress, the answer is yes. But consider that the average American spends about $1000 a year on coffee, and about $200 per year on lottery tickets. I’m not saying you should give up your coffee – instead I’ll just point out that your chance of winning the lottery is 1 in 175 million. Your chances of dying with dementia or Alzheimer’s disease?
That’s 1 in 3.
With those odds, 120 bucks sounds like a pretty good bargain.
[Disclaimer: The author’s research is funded through a grant from the NIH. And he wishes more investigators were funded, too.]