The ice bucket challenge has been ringing around the internet all summer, and dominating my Facebook feed for weeks. I've started to see some "backlash," or perhaps the better phrase is criticism. Wearing ice water doesn't cure diseases. No one learns anything about ALS when you post squealing videos to social media, so it's hardly an awareness campaign. There are other "better" places for your money. I read and considered all this before I was challenged.
I have also lost two colleagues to ALS in my brief career, so my plan was always to donate money and share some learning.
One of the reasons that this campaign has been so powerful is that so very few people had heard of ALS, or Amyotrophic lateral sclerosis, before this summer. This is in part because it is an orphan disease- meaning fewer than 200,000 Americans are affected each year. Many people die within a 3-5 years of diagnosis, after losing the battle to control their bodies so that they can no longer breathe. I've heard this described as a glass coffin, because unlike other neurodegenerative disorders, these patients are not cognitively impacted; their body simply fails them. Currently there is no treatment, and the only drug that is used in "treatment" may extend life 2-3 months without improving symptoms. The current state of treatment for ALS is appalling.
My quick review of recent publications on the disease suggests that everything from disease progression, risk factors for developing the disease, diagnostics and treatment are all currently being studied, and are not even close to fully understood. There is a mouse model of ALS, which has been used to illuminate the role of superoxide dismutase in the neuronal death of ALS. Clearly, a person could make a fruitful career studying ALS with an eye towards helping those affected, who are desperate for a quick intervention.
Unfortunately, a quick intervention is a long way off. The $100 that I give is unlikely to result in a cure or treatment for anyone currently diagnosed with ALS. ALS is that fast, methodical research takes that much time, and the pipeline for this inquiry has all but stalled as NIH budgets for this type of research have been cut continuously for years. I am joining in the chorus of nerdy voices to say that if you care about ALS (or Alzheimer's, or cancer, or mental illnesses that can result in violent psychotic breaks, or diabetes, or Ebola, or TB, or any other disease that may impact people or places you love), and want to see better diagnosis and treatment, support increased funding for the NIH.
The National Institutes of Health provide the majority of funding for basic research and much clinical research on all of these diseases. Tragically, funding for the NIH has been shrinking along with many federal budgets, particularly in the last 4 years. Due to the sequester, the NIH granted 8% fewer grants last year than the year before. The current NIH budget is around $30 Billion dollars, so an 8 percent drop represents the equivalent of a failure to fund many entire universities full of researchers. I have seen many bright and talented researchers leave their research because it cannot be funded. This is sad for them and their career. This is a crisis for the patients their research could have helped.
And let me just address the final point, that there might be "better" ways to spend your time and money. I've spent a lot of time in the last year thinking about how to best manage charitable giving and volunteerism. It's easy to look at this as a problem of finite resources: I have $100 for charitable giving, do I give it ALL to ALS? But I have found that living generously helps overcome those finite resources, it sets off a cascade of positive action. You support an ALS researcher, whose breakthrough provides a glimmer of hope for both ALS patients, and patients with chronic pain or other neurodegenerative issues. The chronic pain patient is able to work longer, earning them a chance to donate money to their local foodbank. That positively impacts other members of the community with an opportunity to get their life together, etc, etc. It's a virtuous cycle. Our time on this earth is short, and we ought to spend it trying to make it a little easier for eachother, in any little way that we can. Ice buckets included.
A similar concern about a "better use" is sometimes raised for supporting research- why spend money on research into something that might NOT be the cure, when patients are suffering now, and that money might be better spent on the care of the currently suffering. The beauty of basic research (which is also funded by the NIH), is that we always learn something. You may learn this gene is not involved in ALS, you may discover a drug that doesn't treat ALS. But this research is an investment in the future. In the future, we want scientists to have a huge body of work to look back on when they are developing and improving therapies for these conditions, which seems like a good use of our limited resources today.
Here is a challenge- it's not quite as fun as pouring ice on your head in the summer, but it won't take much longer.
1) Look up your legislators here:
2) Send them a note like this (you can probably email them via the webform on their contact page):
Dear My Legislators,
As a constituent of yours, I am concerned about the decline in funding for the NIH. Decreased funding for scientific research prevents us from being able to diagnose, treat and cure life threatening diseases. Please support an increase in funding for the NIH, which will contribute to a cure for ALS (or Alzheimer's, or cancer, or mental illnesses that can result in violent psychotic breaks, or diabetes, or Ebola, or TB, or any other disease that may impact people or places you love).
Thank you for your consideration,
Your name here
It's that easy to make your voice heard, and don't forget that your voice matters.
In honor of Denice Hougan and Ellen Fanning, PhD.