Headache on the Hill 2015
On Thurs, April 23rd the Alliance for Headache Disorders Advocacy (AHDA) gathered for its 8th Annual “Headache on the Hill,” (HOH). This was a chance for patients, advocates and even doctors to talk to the legislators representing their respective states about the importance of Migraine research. This was my first HOH and luckily I live in DC. Our group of about 70 advocates came from as far away as Montana and California just to lobby Congress for this cause. At an informational session the night before, the group was prepped on the discussion topics to be focused on this year.
- NIH Should Account for Disease Burden in Funding Decisions: The AHDA states that “many diseases and conditions receive NIH funding at levels far below those warranted by their impact on Americans.” For example, there are 36 Million Migraine sufferers and funding from NIH equates to $0.55 per patient. In contrast, there are 350,000 Multiple Sclerosis patients in the US and yet they receive $291 per patient in NIH funding. As the AHDA reports, “Migraines cause more lost years of healthy life in the US annually, than multiple sclerosis, epilepsy, ovarian cancer and tuberculosis combined.” In contrast, the NIH budget for these four diseases is 35 times higher than that of Migraine. Not wanting to take research money away from any debilitating disease, we are simply asking that the NIH take into account the disease burden when allocating funds for research.
- The Veterans Association Should Prepare for the Wave of Post-Traumatic Headache and Chronic Migraine Patients: Almost half a million veterans of war in the past decade have experienced concussions, Traumatic Brain Injuries (TBI) and Post-Traumatic Stress Disorder (PTSD). Roughly 30% of these Veterans will return home with a chronic headache disorder. Migraines are 5 times more likely to occur in this population of Veterans compared to their civilian age group. We ask that the VA recognize the issue and have a plan in place to treat these soldiers. There are only 510 Headache Specialists in the country. That means there is 1 specialist for every 125,000 Migraine sufferers. Our Veterans deserved better care.
- Renew and Support Funding for Research on Chronic Migraine and Post-Traumatic Headaches: In 2012, funding for research of headache disorders was less than 0.08% of the entire NIH budget, which equals only $24 million. We recognize that it is hard enough for Congress to agree on a budget. We are asking that the level of funding at least stays the same. At such a small amount in comparison to other diseases, it could be easy to cut out our funding. By participating in Headache on the Hill, it serves as a reminder to our legislators that our problem is real and we need all the funding we can get.
Stomping on the Hill
The next morning the troops gathered for a group photo in front of the Capitol Building and then dispersed to our meetings. Depending on the geographical region in which you live, you’d get grouped together with others from the same general area. Your group usually included Headache Specialists as well as patients to present a united front. Before each meeting, the group would gather in the hall to discuss strategy. Who wants to hit on Point #1? Who is going to share their personal story? Was there anything we should change from the last meeting? These quick pre-meetings and debriefing sessions not only gave structure to our discussion, it allowed the participants to really get to know each other and learn.
The meetings in each Congressional office was typically with the staff health legislative aide, who screens all advocacy/ lobbying groups before the message is then later presented to the elected official. Legislative Aides can see up to 15 groups in a day, so their time is precious and our message had to be short, personal, succinct, and memorable.
I met with the office of five different Representatives and Senators. After presenting our three key points, each group asked the members of the Senate to sign a letter to the Secretary of Veterans Affairs urging that a plan be devised to specifically help Veterans coming home with Headache Disorders. Feedback from each office was positive and follow-up contact will be made to ask if the letter to the VA has been sent.
Running between the Senate and House offices to get our message out was exhilarating. Our “Headache on the Hill” badges created questions from others visiting the Hill for their causes, giving us additional opportunities to educate others about the severity of Migraine.
As you can imagine, this was an extremely long day, especially for the Migraine patients who participated. Each of us had our own ways to sustain the day. Some were armed with water bottles and Tiger Balm, while others took rescue meds to ward off an attack. By my fourth meeting, a level 8 Migraine had set in. I was able to say to my teammates that I probably shouldn’t speak in the next meeting as I was having trouble putting words together. There was only a small group of advocates in my last meeting of the day. Realizing I needed to be an active participant, I put my sunglasses on and contributed to the conversation. Sometimes “faking it” is the only option. Actually I think seeing me in that condition, made our cause more tangible to the person we met with. I’m sure I wasn’t the only one whose health declined during the day. But it was worth it.
With each new shift in power it can become easy for a small category like Migraines to be cut from funding. The purpose of Headache on the Hill is to remind our leaders that this is a serious disease that should not be overlooked. It gives a face to a relatively invisible illness. I’m already looking forward to Headache on the Hill next year. If you are not able to make it in person to DC for this event, there are other ways to participate: http://allianceforheadacheadvocacy.org/what-we-can-do/
If you were able to talk to your political leaders, what would you want to tell them about Migraine disease?