Big News From Headache On the Hill
Every year, the Alliance for Headache Disorders Advocacy (AHDA) coordinates a day of stomping on Capitol Hill for migraine research. Patients, caregivers, advocates and doctors spend a day meeting with multiple offices in Congress and the House of Representatives to educate and ask for specific laws or suggest guidelines in order to maximize funding for headache research. Each participant is matched up with their own state Representatives so the Rep can hear from their own constituents that migraine disease is an issue affecting people in his/her state. The day before heading to the Hill, a training session is given to educate the participants on the “asks” for this year that they will discuss the next day.
Previous “Asks” have been:
- NIH should account for disease burden in funding decisions. For example, there are 36 million migraine patients and funding for research from NIH equates to $0.67 per patient. In contrast, there are 350,000 patients with multiple sclerosis and they receive funding equivalent to $291 per patient from the NIH.
- The Veteran’s Association should prepare for the wave of post-traumatic headache and chronic migraine patients. Many veteran’s experience concussions during their tour of duty, which can cause chronic headaches or migraines. Taking care of their brain health is just as important as taking care of their mental health.
- Renew and support funding for research on chronic migraine and post-traumatic headaches. The message here is to not forget us. If we stopped talking to our Representatives, they could easily move money that had previously been set aside for migraine research and divert it to another cause.
Dates for Next Year Have Been Set
If this seems like something you want to be a part of, mark your calendars now, the 10th Annual Headache on the Hill (HOH) has announced the dates for next year:
When: February 13 & 14, 2017
Where: Ritz Carlton, Pentagon City, VA
What: Feb 13th Training Session in the evening
Feb 14th Go to Capitol Hill to meet with members and aides of Congress and the House of Representatives. Meetings are prescheduled and personalized for each Headache on the Hill participant.
How: If you want to receive updates and information leading up to the event, go to http://allianceforheadacheadvocacy.org/headache-on-the-hill/
After 10 years, HOH efforts are paying off in the form new laws and funding appropriation guidelines!
In July, President Obama signed the CARA bill into law. CARA stands for Comprehensive Addiction and Recovery Act. This law is designed to address the opioid and heroin crisis in our country. Within the law, a provision was included that has been one of the many “asks” during Headache on the Hill.
A provision was included in the CARA law that directs NIH “to consider the relative burden of pain in prioritizing the overall NIH research portfolio” (joint quote by Dr. Young and Dr. Shapiro). This relates to the first “ask” explained above. With this provision, the NIH will consider the burden of pain when directing funds, which should directly benefit migraine research
The first and second “asks” above have now been incorporated into the Senate Appropriations report language. It calls for the (1) eligibility of headache disorders research proposals for Defense Dept funding, and (2) increased NIH attention to chronic pain research relative to its impact.
This is incredibly exciting to see the efforts of Headache on the Hill become incorporated into Federal Law and impact how the Department of Defense treats veterans with headache disorders. Of course, HOH did not do this all on their own as the whole law-making process is quite complicated. As a two year participant, I am thrilled to see that our voices, along with many others, have been heard. I strongly encourage you to join us in February 2017 to continue the fight to educate lawmakers on migraine and headache disease!
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