This is an annual event, organized by the nonprofit Alliance for Headache Disorders Advocacy (AHDA), to advocate on behalf of Americans with disabling headache disorders. This is primarily a grassroots advocacy for increased funding of headache research. Its founder and thought-leader is Robert E. Shapiro, MD, PhD and its president is William B. Young, MD. AHDA is supported by a confederation of nonprofit headache organizations.
This group of roughly 50 participants comes from all parts of the country to meet their congressional representatives. Some are clinicians and others are patient advocates. The first afternoon is spent reviewing the congressional process and the specific actions that the group wants to ask their representatives to take. The next day, each group, divided by their home state, is scheduled to meet their House Representative or Senator. The meeting is arranged with the health care policy executive. There were three requests for action, or “asks”.
The significant advances from previous HOH events are that, by underscoring the paltry level of National Institute for Health (NIH) funding for headache grants ($24 million in 2014) relative to heart disease, diabetes, cancer and other neurological diseases, the NIH has evaluated the disease burden of migraine and found that migraine carries the heaviest economic and social burden of all the neurological diseases and is the #10 of all US disability. Currently the members of HOH are advocating for a commitment to award research grants in proportion to their disease burden. If this new paradigm is adopted it could represent a potential increase of $253 million in research monies for the study of headache disorders.
HOH members were asking their representatives to support this concept in letters to the influential chairman and leaders of the Senate Appropriations Subcommittee on Labor, Health, Human Services, Education and Related Agencies. The goal is to adopt the concept of grant allocations linked to disease burden in the final language of their report to the NIH.
Additionally, the HOH request was for the committee to include 5 concepts in their recommendations to the NIH:
fund long-term research projects (5 years),
recruit new researchers into the field of migraine through various fellowships and awards,
include headache specialists in the grant review program,
expand the cost-effective Anticonvulsant Screening Program that has centralized and accelerated the process of screening new drugs for epilepsy to include migraine medications, and
fund the new national American Registry for Migraine Research.
Of interest, the HOH leaders have also argued that the study of migraine disorders is essentially the study of pain. This distinction broadens their mission to include the study of pain mechanisms of post-traumatic headaches, concussions and opioid abuse.
Request to the senators was to renew the annual inclusion of the term “Chronic Migraine and/or Post-Traumatic Headaches” as an eligible research topic area in the Department of Defense (DOD) Medical Research Program. Since 2010, this DOD program has funded more than $10 million of grants to the study of chronic migraines and post-traumatic headaches.
To raise the importance of finding affordable and nonaddictive pain-controlling therapies to replace opioid medications over concentrating only on prevention and treatment of drug abuse.
The Association of Migraine Disorders is not currently a member of the AHDA, but it recognizes its unique value in the overall strategy of improving the lives of migraine sufferers through research. Our organization endorses this activity as one of the most powerful ways to influence and accelerate change in this fight against migraine.
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