From Feb. 10 through 13, representatives from U.S. Pain Foundation proudly participated in Headache on the Hill (HOH) in Washington, DC, for the second year in a row. Organized by the Alliance for Headache Advocacy, HOH is an event that bring together patients, caregivers, and providers to advocate for people with headache, migraine, and cluster diseases at the federal level.
This year, a total 160 advocates attended, including 23 individuals–a combination of staff, volunteers, INvisible Project participants and individuals from Chronic Migraine Awareness–sponsored by U.S. Pain Foundation in thanks to Amgen and Novartis.
More than 220 meetings took place with members of the House and Senate. The advocates’ ask of Congress for 2019 was two-fold: 1) to add headache disease to the “Blue Book” of eligible impairments for Social Security Disability Insurance and 2) to allocate some of the funding available through the HEAL Initiative to headache disorders.
“We are so grateful to everyone that made the trip to DC,” says Katie Golden, Migraine Advocacy Liaison for U.S. Pain. “Change starts with migraine and headache disease advocates sharing their stories.”
The U.S. Pain contingent of the group capped off the event with a dinner, where attendees shared their perspectives on the experience.
“I felt that everyone we talked to was more receptive to listening to us then in years past and that was powerful,” said Becky Sweet-Dwyer, whose daughter, Melissa, who lived with migraine disease and died by suicide, was featured in a previous issue of the INvisible Project. “And I’m happy to be with all of you–this is my home.”
To find out more about Headache on the Hill and to sign up for updates, visit the Alliance for Headache Disorders Advocacy.