Advocating for the Headache community at Headache on the Hill

This year, I’m thrilled to be attending Headache on the Hill, an influential advocacy event for the headache disorder community taking place in our nation's capital on March 18-19, 2024. Headache on the Hill is hosted annually by the Alliance for Headache Disorders Advocacy (AHDA). It brings together a passionate group of advocates - including medical providers, researchers, caregivers, and patients like myself. The mission is to meet with members of Congress and their staff to spotlight legislative issues affecting the nearly 40 million Americans who suffer from migraines and other headache disorders. Also on a personal note, as someone who spent my formative years in Washington, DC, participating in the political process is a dream come true (and as a West Wing superfan).

The power of Headache on the Hill lies in advocates personally sharing their stories and making specific "asks" of Representatives and Senators. An "ask" is a request to support a particular bill or policy priority relevant to the headache community. In 2021, a remarkable 90% of the Congressional offices visited by Headache on the Hill advocates signed a letter of preliminary support for the alliance's asks. This demonstrates the huge potential impact individual advocates can have when we make our voices heard collectively.

This year, our alliance is focusing on four key legislative priorities for Headache on the Hill:

1. Advocating for more NIH research funding on headache disorders, which affect 1 in 7 Americans but remain under-recognized and under-treated. We are requesting support for the Scientific Research into Headache Disorders Act (H.R. 3497/S. 2361) to establish a specialized program at NIH devoted to migraine and headache research.
2. Asking Representatives to join the Congressional Headache and Migraine Caucus, which raises awareness about headache disorders and advocates for patient interests. The caucus provides crucial education on headache issues for legislators.
3. Encouraging co-sponsorship of the Access to Preventative Headache Medications Act (H.R. 3709/S. 2268), which would require insurance coverage for preventative migraine treatments. Lack of access means many patients suffer unnecessarily.
4. Requesting enhancements to Social Security disability benefits for patients unable to work due to severe migraine. We want to specify migraine as a covered condition in the Social Security Act's "Listings of Impairments."

Unfortunately, people often dismiss migraine headaches as not that serious. However migraine attacks can completely derail work, family life and daily functioning. As someone who was diagnosed with migraine at 2, I know firsthand the physical pain, disability, and emotional distress headaches can inflict. Like many patients, I struggle to navigate insurance and coverage for my medications and treatments, even though I am an expert in health insurance from having worked at Collective Health, a tech insurance company. This is why advocacy events like Headache on the Hill are so essential - to help members of Congress truly grasp the severity of headache disorders and how legislation can make a difference. 

I look forward to sharing my experiences, meeting fellow advocates, learning from AHDA's advocacy experts, and ensuring that the patient perspective is heard. With our collective voices, we can generate awareness and spark policy changes to improve diagnosis, treatment access, medical research and disability benefits for the 40 million American headache patients. I'm honored to participate in this impactful advocacy effort that unites patients, providers and researchers working on behalf of the headache community. Our calls for progress will echo throughout the halls of the Capitol!