The ALS Ice Bucket Challenge is a distraction, not a solution

A medical researcher friend of mine made a really good point about the Ice Bucket Challenge yesterday, that the largest source of ALS research funding in the world comes through the NIH, which has lost 25% of its funding due to combination of overzealous federal budget cuts and inflation.

Why is it that our government is arguing that we can no longer afford this, while simultaneously increasing its expenditure on sending weapons to Israel, on drone warfare, and on building a massive surveillance apparatus that watches the activities of pretty much everyone on the internet?

The $23 million (to date) raised through this challenge is literally a drop in the bucket. As part of my job, I review small business expenditures for NIH research grants to a university. The average grant that I review is around $5-8 million dollars. That’s just for one academic study covering about five years of research. We've got a smaller number of subcontracting plans to review this year because the government cuts means that grants are more competitive and many valuable research proposals are not getting the financing that they deserve.

If you really want to do something about ALS, maybe drop some ice buckets over the heads of members of congress who voted to cut medical research funding?

I’ve mentioned before to friends that I don’t like the ALS challenge because the success of internet selfie activism shows that there’s something really narcissistic with the way that millennials are seeking to change the world. A few days ago, I shared a very old blog post called the “Cult of Self Sustainability”, which criticized a trend where “eco-conscious” individuals are compelled to go green in their personal lives, while ignoring the structural factors behind environmental crimes and climate change. In doing so, I argued, well-meaning people are distracting themselves from working collectively to resolve the real causes behind our ecological crisis. In the case of environmentalism, I think that this is more deliberate. With the Ice Bucket Challenge, I think people have become too used to the assumption that “raising money and awareness” should be a default answer to solving society’s problems.

If as many people who have dropped ice on their heads actually got together to demand an increase in NIH funding from Congress, it would happen. Medical research is not a partisan issue, nor should it be. And we also need to stop framing it as charity: until we are able to build a framework where money is not a precursor to how we take care of one another, government funding for credible medical research is a necessary component of a healthier society.