On March 23, 217 advocates from 47 states held 272 virtual House and Senate meetings with Capitol Hill staffers, and in some cases Congress members themselves, as part of the 2021 Headache on the Hill event. U.S. Pain sponsored the attendance of 23 patient advocates.

“U.S. Pain was proud to join fellow chronic pain advocates in efforts to improve research and care for the 60 million American who live with chronic headache disease,” says Cindy Steinberg, National Director of Policy and Advocacy, who participated in the meetings.

The annual advocacy day, organized by the Alliance for Headache Disorders Advocacy, is now in its 145th year.  The two “asks” this year were both connected to the annual Appropriations spending bills:

1. For Congressional representatives to sign on to or send their own letters to Appropriators on the Senate and House Labor Health and Human Services Subcommittees to direct $50 million dollars from the National Institutes of Health (NIH) Helping to End Addiction Long-term (HEAL) Initiative to research on headache disorders.
2. For Congress members to sign on to or send their own letters to members of the Military Construction and Veterans Affairs Subcommittee to appropriate $25 million to double the number of Headache Centers of Excellence (HCoE) within the Veterans Health Administration (VHA) from 14 centers to 28 centers.

“We are hopeful that Congress will answer our call for specialized headache medicine care within the VHA and for increased investment in headache research at the NIH,” says Steinberg.

In 2020, 408,000 veterans sought specialty care for headache disorders, yet only half of veterans seeking such care are within reach of an HCoE. Part of the statutory authority for the HEAL Initiative calls for disease burden to be a crucial consideration for research prioritization.  With 60 million Americans affected by headache disease, the level of funding for headache disorders research is not nearly commensurate with its burden. 

According to Steinberg, Congressional offices were very engaged and interested in the many constituents who took the time to tell their stories.  

To learn more about Headache on the Hill, visit its website. Leading up to Headache on the Hill, a special forum featuring comedian Jon Stewart and 9/11 first responder and U.S. Pain INvisible Project participant Joe McKay was held on the topic of chronic headache disorders and toxic exposure. To watch the recording, visit YouTube.  

U.S. Pain Foundation’s sponsorship of patient advocates was made possible through Amgen and Novartis as well as Eli Lilly.