An open meeting of the people interested in the AHDA was held on Friday June 27, 2008 at 10:30 a.m., during the 50th Annual Scientific meeting of the American Headache Society in Boston.
Also at 50th Annual Scientific meeting of the American Headache Society, a letter from Michael O. Leavitt, Secretary of Health and Human Services was presented. This letter celebrated the 50th anniversary of the AHS and the 15th anniversary of MAGNUM. Leavitt also applauded the efforts of the AHDA.
Update on AHDA advocacy efforts:
- Our proposed congressional appropriations report language* is due to be discussed (“marked up”) later this month in the L-HHS Subcommittees of the Senate and House Appropriations Committees. 12 Representatives and 2 Senators made specific written requests to the L-HHS Subcommittees to include our language in the appropriations reports. While such inclusion would not carry the weight and force of law, it would provide NIH with the sentiment of Congress on this issue and we are told would be taken very seriously by NIH. We are very optimistic that our language, in whole or in part, will be included in the reports.
- To date, over 800 grassroots activists, representing > 75% of congressional districts nationwide, have signed-up at the AHDA website to participate in our advocacy efforts. Their emails this spring were instrumental in obtaining congressional support for our report language.
- The AHDA is now incorporated in Vermont. By-laws have been drafted.
*The Committee encourages intensified efforts by the NIH to produce breakthroughs in understanding the causes, prevention, treatment, and eventual cure of headache disorders, including migraine, cluster headache, and chronic daily headache. The Committee strongly urges the NIH to increase research funding for headache disorders by (1) actively soliciting grant applications with Requests for Applications, (2) aggressively encouraging new investigators with career training and transition (K) awards, (3) providing fair peer review by headache scientists of submitted headache research grant applications, and (4) taking any other steps to ensure that vigorous intramural and extramural headache research programs are established within five years that are commensurate with the high population prevalence and enormous economic costs and disability burdens of these disorders. To identify consensus research targets, the Committee further urges the NIH to collaborate with the national and international research community to develop “Headache Disorders Research Benchmarks”, following the successful “Epilepsy Research Benchmarks” initiative as a model. To improve the transparency of NIH research funding allocations, the Committee expects that ‘migraine’, and ‘headache disorders’ will be included henceforth as individual categories in the annual NIH “Estimates of Funding for Various Diseases, Conditions, Research Areas”, as well as in the forthcoming “Research, Condition, and Disease Categorization”. The Committee also expects to be informed of the steps taken to increase research on headache disorders.
Alliance for Headache Disorders Advocacy 