I wanted to roll all of last week into one blog entry but I got through Tuesday and realized that was insane. So here’s Part 1. Part 2 (and Part 3?) coming shortly…
On Monday, I went to the ALS Association’s national conference, which conveniently is always in DC. I learned a ton from Dr. Lucie Bruijn, ALSA’s chief scientist. For a poli sci major/city planner who hadn’t had her coffee yet, some of it was over my head.
…but in general, she did a great job of breaking down the information. Here are the facts that stuck with me mixed with some of my thoughts and takeaways:
- What if ALS is really an umbrella? My neurologist said once, “if we put 30 ALS patients in a room, they would all look different. Imagine trying to design a clinical trial for that.” I believed her, but didn’t really get it until I saw it for myself with hundreds of pALS at the conference. There were people who couldn’t move their legs (or arms, or either), but could talk completely normally. There were people I assumed were caregivers because they were walking around just fine, but then they’d speak and it came out as a croak. And everything in between. People on respirators, people controlling computers with their eyes to speak. Old people, younger people. A cross-section of races and ethnicities…
- Drug development is expensive. Dr. Bruijn estimated that it could take $1-2 billion to get an effective ALS drug to market. The ice bucket challenge raised $119 million for ALSA and that’s not all going to research. Oh geez.
- Still, IBC mattered. Researchers have had theories and hypotheses for years, but not enough money to get started. The ice bucket challenge fundraising means that the most promising clinical trials are now moving forward.
- DoD research funding is where it’s at. Veterans are TWICE as likely to get ALS as the general population. Why? No one knows. DoD has an ALS research program, which has received $46.9 million since 2007. Interestingly, DoD also has a breast cancer research program, which has received $3 billion since 1993. It started with supporters hand delivering 600,000 letters to their congressional representatives.
I am not knocking funding for breast cancer research — quite the contrary. Look at the progress in breast cancer research and treatment over the past decade. Not only thanks to DoD’s program but you get the point: funding = research = breakthroughs = lives saved. You’d think that a guaranteed fatal disease that veterans are 100% more likely to get would have some more attention and funding. But that’s Congress…or more accurately, that’s what lobbying efforts can do in Congress.