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DC & Headache on the Hill, Part Two

May 15, 2015

Sorry it took me so long to continue my posts about Headache on the Hill….

I had a beyond wonderful day Tuesday, my only day to myself.  I walked from the hotel to the tidal pool and lounged in the sun at the Jefferson Memorial.  I made it all the way around the tidal pool and walked back to a salon near the hotel to get purpled.  I think I walked about six miles, and my head cooperated!  Yay!

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Wednesday was really fun too.  I went to the Capitol Bldg and met up with Eileen, founder of Miles for Migraines, a wonderful organization that I have supported in the past.  We were escorted up the back stairs to a room of people waiting for their photo op with Senator Barbara Boxer.  We waited and waited, which was okay, because I had a chance to get reacquainted with Eileen.  We had met a few years back at one of the Miles for Migraines events.  Anyway, Senator Boxer came up the hallway, took a picture with a few groups, then came up to us.  It was so quick that there wasn’t really anything said, but I did whisper in her ear that I was born and raised in Marin (she used to live in Kentfield).  She then said, “oh great”, and was off to another group.  Quick, but pleasant.  What a beautiful part of the building – it was a privilege.

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Then Eileen and I cabbed our way back to the hotel and walked over to the Marriott Convention Center, where she attended a Alliance for Headache Disorders Advocacy (allianceforheadacheadvocacy.org) board meeting, and I met up with one of my best online migraine buddies, Rosa.  It was SO great to see her again, and we sat and chatted forever.  Our training for the Headache on the Hill advocacy events took place at the Marriott, where the American Academy of Neurology was having its meeting, so it was a quick walk to meet up with Teri Robert, the #1 migraine patient advocate on the planet and another one of my best online migraine buddies.  If it wasn’t for Teri, I’d still be at home feeling sorry for myself and wondering what the hell migraine disease is anyway.  It was so great spending some quick minutes with Teri, and the training went really well.  I was frankly exhausted and headed back to the hotel to collapse.

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Thursday was my big day.  We all met at the Capitol Building for some quick early morning pictures and found our group members.  There were seven of us total from California, so we were divided into two groups.  I was in group two, my lucky number, so I knew things were good.  Dr. Shashi Kori and Adam & Rhonda Chase and I found a coffee shop and quickly got acquainted.  We met with Senator Boxer’s office and Reps Swalwell, Speier, Honda & Huffman’s offices.  Our three “asks” were:

  • The Subcommittee on Primary Heath & Retirement Security hold a public hearing devoted to the topic of the NIH’s (National Institute of Health) efforts to account for disease burden in its researching funding priorities. It turns out that many diseases and conditions receive NIH research funding at levels far below those warranted by their impacts on Americans. Pain and headache disorders are prime examples. Migraine research funding by NIH is approximately 10% of the amount directed towards diseases with similar burdens – $25 million. We’d like to see that eventually raised to $250 million, where it should be. Diseases with much less burden on Americans, such as end of life issues, are receiving much more money, because they have celebrities or some other reason for publicity. Migraines and other headache diseases hit Americans in the prime of life, when they are the most “productive” – mostly women in their 20’s – 40’s. If we could get some of the 36 million American migraineurs back on their feet, we’d save some of the $31 billion dollars in indirect economic costs that we lose annually. There has been one prescription developed for migraine EVER, and it has helped many people. But NIH under-funding has resulted in too few headache research scientists and little interest in submitting grants for NIH funding.
  • We also requested a letter sponsored by Senators Coons & Ayotte to be signed and sent to VA Secretary Robert McDonald highlighting the direct connections between military service and post-traumatic headache. Traumatic brain injury is one of the “signature injuries” of the wars in Afghanistan & Iraq (20%, 20%!!! of service personnel sustained concussions or mild traumatic brain injuries). 98% of those with concussions reported headaches during their final three months of deployment. Recent studies suggest that combat exposure itself may be a risk factor for chronic migraine and PTH. We all know how difficult it is to treat migraine and headache disease, but combine that with veterans coming home from service and navigating the VA system, which I know anecdotally has NO IDEA how to deal with chronic headache, and we are really letting down our veterans. Again.
  • Finally we asked Congress to renew and support existing funding of research on headache disease in the Department of Defense Congressionally Directed Medical Research Program, apparently a separate pot of money that Congress delegates to further research.

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I felt like we did a great job. Adam Chase is a fourteen year old migraineur, whose mother and sister also suffer with severe migraine. He was amazing – speaking so well to all of the different Congressional staffers. His mother Rhonda was totally amazing, considering she is trying to take care of herself AND two kids with severe medical problems. I don’t know how she does it! And Dr. Kori is a research neurologist currently working on a research program at Stanford to help cluster headache sufferers. He is a wealth of scientific migraine and headache information and extremely well spoken. He was the one who kept pointing out that we have millions of chronic migraine sufferers at the prime of their lives, who cannot be the best that they can be. Like me, so many have had to give up dreams of careers and family. And believe me, this problem is just going to get worse. As women marry less, they will end up on their own, without financial help from a spouse and unable to work. As feminists we are encouraged to put our careers first, and hells yes, be self-sufficient! Even if we increased migraine funding 1,000%, which we think would get us to just an equitable level with other diseases, it would be years before drugs and treatments would become available.

In the end, all of my follow-up communications failed miserably.  None of the staffers even sent me an email saying they received my emails.  It was very disheartening, but I hope that if I attend again next year, and start building on relationships, it can only get better, right?  Anything is better than zero, right?  I apparently caught the flu from some wonderful passenger on my trip east, because my flight home was horrid, and I was sick for a good two weeks after the trip.  No good deed….

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Positives for the Day:

  • As long as we fight and push our legislators, we can be heard.  It may not lead to substantial action, but there is a lot of value in being heard.
  • I had a really good time and enjoyed the advocating/political life!
  • #HOH2015

Talk at ya again soon, and as always, stay positive! Sara

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