Our History

2022

Headache on the Hill (virtual): 204 participants, 48 states, 264 Congressional offices visited.

2021

Headache on the Hill (virtual): 217 participants, 47 states, 272 Congressional offices visited. AHDA WIN! Following AHDA advocacy, the Center for Medicare & Medicaid Services (CMS) announces a decision to cover home-use of oxygen therapy for Medicare beneficiaries with Cluster Headache.

2020

Headache on the Hill: 173 participants, 45 states, 225 Congressional offices visited.

2019

Headache on the Hill: 160 participants, 42 states, 223 Congressional offices visited. AHDA WIN! Following AHDA advocacy, the Social Security Administration issues the first-ever formal guidance for navigating its disability evaluation process for SSDI/SSI claimants with impairments arising from migraine and headache disorders.

2018

Headache on the Hill: 145 participants, 39 states, 212 Congressional offices visited. AHDA WIN! Following AHDA advocacy, Congress appropriates $10 million to establish a national system of Headache Disorders Centers of Excellence within the Veterans Health Administration. Following further AHDA efforts, this system now includes 19 national sites that direct headache care for more than 400,00 veterans annually. Following AHDA advocacy, the FDA formally states that migraine is a “Serious Condition”, a regulatory designation that qualifies drugs for migraine to be considered for priority review, breakthrough status, accelerated approval, or fast track status. Following AHDA advocacy, grant funding becomes eligible for “chronic pain management research”, specifically citing “migraines and chronic headaches”, under the Department of Defense Congressionally Directed Medical Research Program (CDMRP). Since 2019, more than $35 million in research has been funded under this program.

2017

Headache on the Hill: 93 participants, 33 states, 158 Congressional offices visited. AHDA WIN! In follow-up to the STOP Pain Act, AHDA assists in drafting the bipartisan “Opioids and STOP Pain Initiative Act of 2017” that directly anticipates 2018 appropriations to establish the NIH Helping End Addiction Long-Term (HEAL) Initiative to advance NIH research on pain and opioids. Research funding under this Initiative has now totaled more than $3.5 billion.

2016

Headache on the Hill: 60 participants, 30 states, 123 Congressional offices visited. AHDA WIN! AHDA assists in drafting the “Safe Treatments and Opportunities to Prevent (STOP) Pain Act of 2016”, which is then signed into law. These provisions authorize NIH to intensify and coordinate research regarding the understanding of pain; the discovery and development of therapies for chronic pain; and the development of alternatives to opioids for effective pain treatments.

2015

Headache on the Hill: 68 participants, 34 states, 138 Congressional offices visited.

2014

Headache on the Hill: 91 participants, 34 states, 131 Congressional offices visited.

2013

Headache on the Hill: 64 participants, 28 states, 129 Congressional offices visited.

2012

Headache on the Hill: 62 participants, 33 states, 120 Congressional offices visited.

2011

Headache on the Hill: 68 participants, 34 states, 138 Congressional offices visited.

2010

Headache on the Hill: 52 participants, 35 states, 144 Congressional offices visited. AHDA WIN! Following AHDA advocacy, grant funding becomes eligible for “chronic migraine and post-traumatic headaches” research under the Peer-Reviewed Medical Research Program (PRMRP) of the Department of Defense Congressionally Directed Medical Research Program (CDMRP). Since 2010, more than $50 million in research has been funded under this program.

2009

Headache on the Hill: 35 participants, 27 states, 127 Congressional offices visited.

2008

An umbrella organization is established to ensure the future success of Headache on the Hill: The Alliance of Headache Disorders Advocacy (AHDA). Shapiro is named president. For the first time, all national and regional headache advocacy organizations are united for a common cause.

2007

The first Headache on the Hill event takes place. A group of 45 volunteer advocates pay their own way to Washington, D.C. They visit 136 Congressional offices, representing 29 states. AHDA WIN! AHDA successfully requests for the Congressional Appropriations Committees to issue statements (“Report Language”) that urge an increase in NIH funding for migraine and headache disorders research, and annual reporting of amounts of such funding.

2006

Inspired by the AAN, headache advocates gauge support for their own lobbying event, “Headache on the Hill.” Organizers include Shapiro and Kathy Gardner, a headache neurologist. AAN supports the event with advocacy training. The World Health Organization and eleven other influential national and international organizations send letters of support.

2004

The scarcity of headache-related NIH research grants is brought to the attention of the American Academy of Neurology (AAN). Shapiro attends Neurology on the Hill, the Academy’s formal lobbying event in Washington, D.C.

2003

Neurologist Robert Shapiro becomes aware of the dire lack of NIH research funding for migraine and other headache disorders.