Posted on 03/03/2019
This blog was originally run on Migraine Mantras
Every year in February, advocates for migraine and headache disease come together in Washington, DC for an event known as Headache on the Hill. HOH is organized by The Alliance for Headache Disorders Advocacy (AHDA), and has been running now for 12 years.
During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.
HOH 2019 just recently passed, and we all had an amazing experience together. We also had a record number of advocates attending this year: 160 people turned out to advocate from 46 different US states.
Our “asks” that we presented to Congresspeople and staffers were two-fold this year:
Our first ask requested an allocation of NIH (National Institutes of Health) pain funding specifically for migraine and headache disorders. We asked NIH pain director Francis Collins and Congress for The HEAL Initiative to create comparable RFA (Resource Family Approval) programs focused on migraine and headache disorders research in the same way they have found non-opioid pain therapy programs specifically for back pain and hemodialysis pain. This does not require more funding, but instead asks for the existing budget to be reallocated in proportion to the disease burden.
Our second ask was to create a blue book listing specifically for migraine and headache disorders in order to make social security disability insurance more accessible to people with migraine or headache disease. Per the current standards, a patient with one of those diagnoses applying for SSI/SSDI has to apply under the unfair pretense of epilepsy, a very different neurological disorder that is incomparable to migraine.
Since HOH 2019 has passed, we asked several attendees and members of The US Pain Foundation what made the HOH experience so special and memorable for them, and here’s what they had to say:
“It was empowering to connect with others who understand the unique challenges of living with migraine disease, to join our voices and share our stories with lawmakers. I hope telling my story will help bring policy change. It has already brought change within me. I now know that I am not alone and that my pain does not define me.”
– Peggy Stumhofer, pictured with Rep. Joe Wilson from SC
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