Several lawmakers have used their large public platforms to raise awareness for ALS research by participating in the ice bucket challenge, which is more than the average American can do. At the same time, Congress also has the power to sustain funding for medical research long after the social media campaign dies out.
As Sam Stein at The Huffington Post reported, at least 18 members of Congress who've done the ice bucket challenge also voted to cut funding to the National Institute of Health through the Budget Control Act of 2011. Congressional Republicans agreed to the budget in exchange for across the board budget cuts — the sequester. That cut the National Institute of Health's budget by 5 percent, and ALS research from $44 million a year to $39 million.
And funding looks even worse when you compare it to 2010, when NIH spent $59 million on ALS research (that includes a $12 million boost in funding from the 2009 stimulus.)
As Stein notes, none of the lawmakers specifically wanted to see ALS research cut, and obviously support private donations to the charity. Meanwhile, the ALS Association is making way more than what was cut from public funding. The ice bucket challenge made $31.5 million for ALS research since it started, compared to $1.9 million during the same time period last year. For fiscal year 2014 the ALS budget is $40 million, $19 million less than its 2010 peak.
Does that mean the system works, and the public should leave medical research funding to the private sector? Not exactly. As Mary Woolley, the chief executive of Research!America, told The Washington Post, a brief surge in funding isn't the same as the sort of sustained funds the government provides. "It takes the level of funding on a sustained basis that very few foundations can provide. And then the federal government really has to sustain that process," she said.
Government funding is especially critical to diseases like ALS and other so-called "orphan diseases" — they're so rare pharmaceutical companies don't have a financial incentive to spend money researching a cure. Ice bucket challenge donations will help researchers develop their proposals so they can apply for NIH grants, which have become more competitive in the wake of the cuts, Wolley said. So members of Congress can rest somewhat easy, knowing that their ice bucketing will help some up-and-coming scientist compete for funding they've helped limit. But if they really wanted to make a longterm difference in the search for a cure, it's going to take more than a bucket of ice and a $100 check.
This article is from the archive of our partner The Wire.