By Katie M. Golden
No matter what side of the political aisle you prefer, many in the pain community are concerned about the future of healthcare. Since the surprise ending of the presidential election, I’ve decided to focus my anxiety into a cause that is near and dear to my heart, while being a part of the political process.
I have chronic migraine disease, meaning that I experience 15 or more migraine days a month. On Feb 13 & 14th, I will be attending Headache on the Hill for the third time to have my voice heard on the importance of funding and research for the 36 million Americans who have some form of migraine.
This event is celebrating its 10th year and is sponsored by the Alliance for Headache Disorders Advocacy (AHDA). This year over 115 patients and headache specialists will gather. The night before going to Capitol Hill, the group will be briefed at an advocacy training meeting on the items (called “asks”) that should be discussed in every meeting with a state representative or their health legislative assistant in Congress. These asks are important in trying to further the agenda of AHDA, which ultimately wants to see more funding allocated for migraine.
In previous years, the “asks” have been:
- NIH Should Account for Disease Burden in Funding Decisions:
- The Veterans Association Should Prepare for the Wave of Post-Traumatic Headache and Chronic Migraine Patients:
- Renew and Support Funding for Research on Chronic Migraine and Post-Traumatic Headaches:
The first ask listed above relates to diseases and conditions that affect fewer citizens sometimes receive more funding than those that are affected more. Migraine is the 6th highest disabling illness in the world, yet only receives less than .10% of funding in America.
In 2016, the CARA Act (Comprehensive Addiction and Recovery Act) was signed into law. 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. With this provision, the NIH will consider the burden of pain when directing funds, which should directly benefit migraine research.
Another win related to the Headache on the Hill ask was that the Senate Appropriations report language call for the (1) eligibility of headache disorders research proposals for Defense Dept funding, and (2) increase NIH attention to chronic pain research relative to its impact.
Of course, Headache on the Hill did not do accomplish this on their own, as the whole law-making process is quite complicated. However it shows that our voices are being heard, along with other advocacy groups and even individuals. It’s too late to join us this year, but we’ll let you know how it went and information about the 2018 event when available.
Katie Golden lives in Southern California. She is a member of the American Headache and Migraine Alliance (AHMA), the National Headache Foundation and the US Pain Foundation and community moderator for Migraine.com.