Headache on the Hill 2016
On February 8-9 the Alliance for Headache Disorders Advocacy (AHDA) gathered for its 9th Annual “Headache on the Hill,” (HOH). This is a chance for patients, advocates and even doctors to talk to legislator representing their respective states about the importance of Migraine research. Having had an amazing experience last time, I was really looking forward to this event.
Our group of about 60 advocates from 30 states 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 $0.67 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 asked that the NIH take into account the disease burden when allocating funds for research.
Each Senator was asked to send their own letter to the HELP Committee requesting that increased pain research funding be included in the NIH/FDA (“Innovations”) reform bills that are currently being considered by that Committee.
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 asked 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, with virtually none in the VA system. Our Veterans deserved better care. Each House and Senate offices were asked to send their own individual letter to L-HHS Appropriations requesting our NIH headache disorders Report Language.
Renew and Support Funding for Research on Chronic Migraine and Post-Traumatic Headaches: In 2014, funding for research of headache disorders was less than 0.08% of the entire NIH budget, which equates to $24 million. We recognize that it is hard enough for Congress to agree on a budget. We asked that the level of funding at least stays the same. At such a small amount in comparison to other diseases, it could be easily forgotten. By participating in Headache on the Hill, it served as a reminder to our legislators that our problem is real and we need all the funding we can get. Each Senator was asked to send her/his own individual letter to Defense Appropriations Committee requesting the Congressionally Directed Medical Research Program (CDMRP) include Migraine-friendly language in an upcoming bill Report Language.
Gotta Have a Little Fun
Last year, I noticed that after the briefing, people peeled off into different groups for dinner. In prep for this year’s event, a few people I had met online where planning on being there and set up a dinner date. And then the word spread. At a headcount of 25, I reserved a room at a nice seafood and steak restaurant near the hotel. Migraine.com sponsored this event, which drove down the cost of everyone’s meal to about $20 instead of $40 or $50. Their generosity was much appreciated.
I asked everyone to introduce themselves and to tell us something that was NOT related to Migraines, because we shouldn’t be defined by our illness. I was very proud of creating another opportunity for doctors and patients to interact before going to the Hill the next day Feedback was great and I hope to make this an annual event as part of the schedule for Headache on the Hill.
Stomping on the Hill
The next morning we all gathered for a photo in front of the Capitol Building amid cold rain. Each person had their own agenda that typically covered the states they are from. So some only had 2 or 3 meetings while I had 7 meetings due to my connections in multiple states and friends working in Senator’s offices.
You were never alone in a meeting. Typically at least one Headache specialist was in the room to answer more technical questions, while the patients quickly told their personal stories about how Migraines have changed their lives in a negative way.
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.
My groups were lucky to do a quick meet and greet with 4 representatives including photo ops. The most inspiring story from the day was a patient who came last year and was just so excited to meet Sen. Charles Schumer. We were able to get a picture with him. This year he was in a better condition and could walk using a cane instead of the wheelchair from the previous year. He proudly has two pictures with the Senator showing the progress he’s made in a year. That was very special to watch.
For me, by my second to last meeting I had gone into full Migraine meltdown. I went to the bathroom and breathed and stretched and found the courage to get into the meeting. The 2 neurologists with me in the meeting were able to help me tell my story since it was very difficult to form coherent sentences. Luckily I knew them both well and they were able to fill in the blanks. While I was slightly embarrassed, I think it was important for others to see the effects of Migraines.
Is it working?
Yes, our efforts are being recognized. At the first Headache on the Hill, NIH funding for Migraines was about $8 million. It has now increased to $24 million. I believe that it takes a long time to educate each legislator and their office about how debilitating Migraines are and how returning Vets have an increased risk for Migraines due to Traumatic Brain Injury.
After almost a decade of HOH, some advocates and doctors have formed relationships with the Health Legislative Assistants in each office of their home representatives. Connecting with these offices over the course of the year and not just during HOH, remind the staff that this is an important issue that needs attention.
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. Check out the AHDA’s website for information on asks, leave behinds and statistics. If you couldn’t be there in person, you can draft letters to ask your representatives to get on board.
If you were able to talk to your political leaders, what would you want to tell them about Migraine disease?