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…
ALS Conference
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…
Dr. Bruijn spent a lot of time on “why drugs fail.” Is it because they’re ineffective? Or is it because they’re tried too late, when the person is too ill to make a difference? Or is it because the person has a different genetic mutation? (so far there are ~30 possibilities identified)
Or is it because researchers are lumping everyone with all these diverse symptoms and rates of progression into one disease and the same clinical trials? What if “ALS” is actually an umbrella term, like “cancer”? So instead of brain cancer, breast cancer, bone cancer, prostate cancer, etc, they’re basically trying to find one drug to cure cancer. Oh geez.
- 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.
ALS Advocacy Day on the Hill
…which leads me to Tuesday. On Tuesday, pALS, caregivers, family members and supporters took Congress by storm. Which for me entailed three 20-minute meetings with congressional staffers. (Oh geez.)
Not to be too flip. I was impressed with the staff we met from Senator Barbara Mikulski and Rep. Chris van Hollen’s offices (my Maryland reps). They had met with the local ALSA chapter folks recently, remembered the issues, and genuinely seemed to be listening.
Basically, the meetings went like this: I was in a group of six consisting of our leader (a volunteer advocate whose first wife died of ALS last year, his new wife (married on Saturday!), two women who lost family members to ALS, one ALSA staffer, and one pALS (me). Our leader, Steve, would cover the basics of ALS (3 min), we would go around the table and tell our stories (5-7 min), Steve would present ALSA’s legislative priorities* (5 min), and the staffer would ask questions or talk about what his/her boss has done to support ALS legislation (5 min). Then we would close the meeting and leave behind materials (I slid in a copy of Endurance magazine 🙂 ).
[*Legislative priorities, if you’re interested: Continuation of the same $20 million as funded last year ($10M for the CDC registry of pALS, $10M for the DoD research program mentioned above), support for “dormant therapies” that would extend patents for promising medical compounds to incentivize industry to develop them, and support for the Steve Gleason Act to fix some incredibly stupid policy decisions by Medicare (which passed the Senate 99-0, yet to be taken up in the House)].
While I think our little group did a good job, it was hard to feel impactful. We were part of a “fly in day,” insider speak for causes like ours descending on the Hill on one day for these 20-minute meetings. We were sharing our fly in day with the American Heart Association, at least, if not others. I’m sure they had just as gut-wrenching stories as we did. And that’s just one day in the life of Congress.
On the other hand, it was better than not being there. And it was something I could do when so many other pALS can’t.
My overall takeaway from this experience? After it was all over, I felt every bit of the Blazeman Foundation‘s tagline: “So Others May Live.” Waiting on a miracle drug when Phase I clinic trials are just starting…waiting on Congress…it was just…depressing.
But I feel more passionately than ever about Team Drea’s focus on fundraising for research to find a cure for ALS. Advocacy is important, assistance to offset the financial burden of ALS is important, but research is the only way to get off this crazy ride for good.
SO much more happened last week — I was asked to be an ALS ambassador, a friend’s passing, a reunion of friends from high school, and Team Drea at Ramblin’ Rose Raleigh. Stay tuned!
18 Comments. Leave new
Well thought out and written!! You are a true ALS ambassador, Andrea.
Ten years later after Jon's diagnosis I am still blown away by the difference in presentation of symptoms…which does make us wonder how an effective treatment will work…
Breast Cancer…my mother and 3 paternal aunts had breast cancer in the 60's and seventies. Only one died from the disease as she ignored the symptoms much too long…and that was before all the cutting edge treatments of today…so why does that get more funding? Politics maybe?????
For bmom and bdad…it is a labor of love for Jon…it is not our income…we take none.
Andrea…we are so blessed to know you…you are a true warrior in the War on ALS…
With much love,
Mary Ann and Bob,
Jon's mom and dad
xxxooo
Andrea, wanted to say it was great spending the day on the hill with you. You are an amazing woman. Roseann Flyte
Thank you for sharing this update. I didn't know that people experienced so many different symptoms. I guess that would make sense why it can be difficult to get a diagnosis of ALS.
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