AHDA HeadNotes

Congress Is Listening. Is NIH?

Tuesday your advocacy efforts paid off. As a result of past Headache on the Hill events and the on-line petition (almost 9000 signers so far), Congress has taken notice.

A hearing on Pain in America; Exploring Challenges to Relief was held Tuesday before the full Senate Health, Education, Labor, and Pensions Committee. At the hearing, Senator Bernie Sanders (VT) entered into the Congressional Record our written testimony on the impact of headache disorders. Take a look at the submitted testimony, including some of your comments, and listen to the hearing. The exposure provided by this hearing represents real progress in gaining congressional awareness of the disabling nature of headache disorders.

Congressional attention is crucial because the funding for headache research remains abysmal. The new numbers for NIH expenditures for ‘headaches’ and ‘migraine’ were posted on Monday. While NIH funding for headache research rose overall from $19M in FY10 to $21M in FY11, it is estimated to drop to $20M through FY13. Likewise, migraine research rose from $15M in FY10 to $16M in FY11, but is predicted to remain at that level through FY13. Where are the significant funded initiatives that were to emerge from the NIH planning workshop of 2010? Furthermore, the Department of Defense is not following-up their past funding of headache research with any new funding in FY12. Essentially research funding levels are static everywhere, where they ought to be doubling every two or three years to make up for decades of lost research opportunities.

So we still need your help now. We still seek a full airing of the state of headache disorders in devoted hearings before committees on both the Senate and House sides of Congress.

If you haven’t signed the petition already,

please sign the petiton now.

Please encourage others to do so too. Here's a URL that's easy to remember that will take you directly to a petition page: www.HeadacheAdvocacy.org/petition.

There's also a one-page flyer you can download and share with others via email or by printing and giving it to them. It even has a QR (quick response) code on it that can be read by apps on many smart phones. When read in those apps, it goes directly to the petition page so people can sign it. Download the flyer.

Thanks very much.
Bob Shapiro

Updates and Needed Action

The current advocacy goals of the AHDA are focused on increasing US federal funding for research on headache disorders to levels that are appropriate to their enormous individual and societal burden. Our analyses point to an increase in such funding as the single most important change that we could effect to transform the landscape for sufferers with new effective therapies and improved access to doctors and other health care providers with specialized care.

A key strategy that the AHDA employs towards gaining equitable federal research funding is to make our case directly to congressional legislators in Washington, DC, during advocacy events that we call Headache on the Hill (HOH). To date, AHDA has sponsored three HOH events on September 26, 2007, February 24, 2009, and, most recently, February 23, 2010 (click here for group photos). Coordinated with these HOH events, the AHDA has made grassroots appeals to all Americans to contact their Senators and Congressmen to support our goals through emails delivered directly via the AHDA website.

The February, 2010, HOH event was our largest ever. It was attended by 49 advocates including patient activists, physicians, psychologists, research scientists, dentists, bloggers, memoirists, English and sociology professors, foundation executive directors, nurses, medical students, fellows, and even a high school student. What all of these people had in common was a commitment to reducing the impact of migraine for sufferers. Mrs. Cindy McCain, a migraineur and staunch supporter, provided keynote remarks during an issues briefing and training session. Then the advocates visited 144 Senate and House offices from 35 states, including 70% of the congressional offices with direct jurisdiction over the National Institutes of Health activities (click here for Leahy photo). Closely coordinated with the 2010 HOH event was a very well-attended congressional briefing on post-traumatic headaches and migraine among military service personnel which was intended to educate Members of Congress about this important issue and the great need for further research.

What have the HOH events achieved so far? The principal direct legislative results emerging from the first two HOHs were inclusion of very strongly worded statements (click here) supporting increased headache research in both the Senate and the House appropriations bills that determine the NIH budget for the last two fiscal years. These statements, called ‘report language’, do not have the force of law, but clearly inform the NIH regarding specific congressional priorities for federally funded research.

As a direct result of the report language, several pivotal developments have occurred in favor of headache research. First, as mentioned in the 9/18/09 HeadNotes blog entry, the NIH will begin next year to report their annual expenditures on headache disorders research to greatly improve transparency. Secondly, the NIH has agreed, for the first time ever, to appoint a headache research scientist to a three-year term on a panel (called a ‘study section’) to provide peer-review of headache research grant proposals. This fundamental change should begin to level the competitive playing field in assuring fair and well-informed evaluations of such proposals. Finally, the NIH is convening a major NIH-sponsored conference (called a ‘workshop’) on May 16th and 17th that they state is intended to “develop a long-term strategy to support and promote headache research and develop Headache Disorder Research Benchmarks.” We hope and expect that the outcomes of this workshop will bring major new NIH funded research programs that will indeed transform the field of headache medicine and markedly improve the prospects for tens of millions of sufferers.

In order to assure that the proceedings and recommendations that emerge from the May NIH workshop are taken seriously and followed-up with substantial funded programs, Senator Patrick Leahy (VT) and Representative Peter Welch (VT) have drafted a letter (click here) of firm support to Dr. Francis Collins, the Director of NIH, which will be copied to the Honorable Kathleen Sebelius, the Secretary of Health and Human Services. Senator Leahy and Representative Welch are very eager to have as many other Members of Congress co-sign this letter as possible in order to send the strongest possible message that headache research must become a major NIH priority. We are asking that you contact your Senators and Representatives as soon as possible through the AHDA website (click here) to ask them to co-sign this letter. We encourage you to add a few words to our message that can express to your Members of Congress what better therapy for migraine and other headache disorders would mean to you. With only a few mouse clicks you really can make a significant difference. Please join us now.

Best Regards,
Bob Shapiro
President, AHDA