July 22, 2010 Update:

We’re pleased to update you on the interim progress of 2010 AHDA legislative efforts. Bob Shapiro has prepared a comprehensive update that can be found on our blog, HeadNotes.

Since our last update, we've seen some excellent progress.

It's an exciting time.
Please read this update.

There are no current action Alerts, but you can be prepared for the next one...

What YOU can do to help

Now:
Look around our site and sign-up for email updates. We will notify you by email when important information is added to our site or action needs to be taken. Take special note of the link in the left column, "What We Can Do ALL the Time."

Spread the word to your friends and family. You can download our flier and distribute it to friends, family, whomever you know to encourage them to participate in this project. CLICK HERE to download the flier.

2009 House of Representatives "Dear Colleague" Letter:

As a result of Headache on the Hill and AHDA activities, including emails sent by patients and other supporters, 11 members of the House of Representatives sent a letter to Chairman David R. Obey and Ranking Member Todd Tiahrt of the House Appropriations Subcommittee on Labor, Health, Human Services, and Education requesting inclusion of language in the appropriations bill for NIH that supports programmatic changes at NIH requested by AHDA.

The lead co-signers of this letter were:

• Peter Welch of Vermont

• Jean Schmidt of Ohio

Nine members of the House joined them by signing the letter:

• Raul Grijalva of Arizona

• Michael Capuano of Massachusetts

• Robert Brady of Pennsylvania

• Ed Whitfield of Kentucky

• Mary Jo Kilroy of Ohio

• Jim Gerlach of Pennsylvania

• Dennis Kucinich of Ohio

• Rush Holt of New Jersey

• Tammy Baldwin of Wisconsin

To see a copy of this letter, including the signature page, please click on the image below:

Downloadable Information Sheet

We have a basic information sheet/flier available for download and sharing with colleagues, family, and friends. To download this PDF document, please click HERE.

Headache on the Hill 2009

2/21/09 Update: Registration for HOH '09 is now closed. We will report on the event soon. Thank you!

Colleagues

We’re delighted to announce that the second Headache on the Hill (HOH) advocacy event will be held in Washington, DC on Monday, February 23rd and Tuesday, February 24th 2009. We hope that you can make this event.

The long-term goal of the Alliance for Headache Disorders Advocacy is to provide equitable NIH funding for research on headache disorders. You might ask, why bother going to Congress now, when the prospects for increased discretionary spending appear to be so dim? First of all, we intend to make specific programmatic requests of Congress during HOH that should have lasting benefits but that will require relatively modest short-term increases in NIH expenditures. Secondly, this spring is a unique advocacy opportunity: the “honeymoon” of a new Democratic President and a Democratic Congress promises action on a broad legislative agenda. Furthermore, a new NIH Director will be chosen next year and, even in the leanest of times, NIH initiates some new programs and adjusts its priorities. Finally, successful advocacy is often a slow iterative process requiring continuous engagement. We are building on the legislative progress that began with the first HOH in September 2007 and resulted in language in the recent US Senate Appropriations Committee Report strongly urging increased NIH attention to headache disorders. If we are to realize these necessary changes in NIH funding, we must continue to make our issue heard before Congress.

We truly hope that you will be able to be join us at HOH. Your participation can make a difference. Please apply and reserve your hotel room as soon as you can.

Thanks,
Bob Shapiro
Bill Young
Teri Robert
Brad Klein

Alliance for Headache Disorders Advocacy
http://www.allianceforheadacheadvocacy.org/  
 

2007 - 2008 Summary
(in reverse chronological order)

An open meeting of the people interested in the AHDA was held on Friday June 27 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.

(Click on the letter to see the full size document.)

Update on AHDA advocacy efforts:

• Our proposed congressional appropriations report language (below) 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.

Proposed appropriations report language:

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.

House of Representatives "Dear Colleague" Letter:

As a result of Headache on the Hill activities and AHDA activities, including emails sent by patients and other supporters, 12 members of the House sent a "Dear Colleague" letter to Congressmen David R. Obey and James T. Walsh of the House Appropriations Subcommittee on Labor, Health & Human Services, Education and Related Agencies.

Senators Leahy and Sanders also requested that the Appropriations Committee include the same report language on the Senate side.

To see a copy of this letter, including the signature page, please click on the image below:

The Alliance for Headache Disorders Advocacy grew from a September, 2007, meeting and project to address the NIH funding issue described below. That inadequate funding is the first issue that the AHDA has undertaken, and will continue to address.

As the AHDA grows, we will be addressing other important issues as well.

NIH Funding of research into Headache Disorders:

There can be little doubt that the healthcare system in the United States has problems. One of them is the lack of adequate funding for basic research, much of which must be funded by the National Institutes of Health (NIH). Not only is the NIH underfunded by Congress, but research funding is not allocated in a way to best meet the needs of American citizens. Diseases and conditions that affect fewer citizens sometimes receive more funding than those that affect more. Migraine disease and other headache disorders are among those conditions that receive less research funding than other conditions that receive more funding. Addressing this disproportionate funding is the first undertaking of the Alliance for Headache Disorders Advocacy (AHDA).