The Uncertain Future of Migraine Research

Last Monday, President Obama submitted his fiscal year 2012 budget proposal to Congress. Embedded within this mammoth document is a report (referred to as the ‘RCDC’) with estimates of the annual National Institutes of Health expenditures related to research on 229 different conditions and diseases. This year, as a direct result of AHDA advocacy, the RCDC lists two categories for the first time ever: “Headaches” and “Migraines”. With inclusion of these new annual categories, migraineurs are finally now assured of transparency for NIH funding of headache disorders research. That’s the good news.

The bad news is that the level of NIH funding for headache disorders research is dismal. (Unfortunately, this is no surprise.) In FY2010, NIH spent $18M for “Headaches” research, with $15M of that amount for “Migraines” and presumably $3M for non-migraine “Headaches” research. While $15M is a huge sum for almost any individual, it is nearly inconsequential relative to federal research funding devoted to other disorders and in the face of the vast burden of migraine; this year, over 60 million Americans will experience an attack of probable or definite migraine leading to immense collective disability and a total economic cost exceeding $31B.

But even more concerning than the abysmal FY2010 funding is that the new RCDC data also indicate that there are no anticipated increases in NIH funding for headache research through FY2012. That is, there are apparently no new budgeted NIH programs to increase headache research to be implemented through September 30, 2012. This is dispiriting. Here’s why.

As a consequence of AHDA advocacy and the vital support of like-minded Members of Congress, the US Senate and House included requests in their appropriations bills in June 2008 urging the NIH to work with research investigators, health care providers, and the interested public to develop Headache Disorders Research Benchmarks to track research progress in this area. These congressional requests prompted discussions in the summer of 2008 between NIH administrators and the AHDA regarding the organization and convening of an NIH Headache Research Planning Meeting. The goals of this meeting were to develop consensus plans for increasing research in this area, as well as to define concrete benchmarks to mark progress.

Well, the implementation of this benchmarks process has been very slow. Actually, slow would be too generous a description. It has been glacial. On April 24, 2009, the NIH hosted selected research investigators at a “preliminary” planning meeting in anticipation of the actual planning meeting. The larger planning meeting itself occurred over a year later on May 16-17, 2010. That was 9 months ago, 32 months since the original congressional requests, and the NIH has not yet released the findings and reports of that meeting. Bear in mind that the conference was simply intended to develop plans for further research activity, not to review actual grant proposals for possible funding and then to begin research studies. Why is there such a delay?

Perhaps the delay just reflects NIH administrative inefficiency. On the other hand, the new RCDC data suggest another possibility. The NIH apparently has no intention of implementing any new initiatives in foreseeable future; that is, there is no money set aside to increase NIH headache research through FY2012. When are the plans from the planning meeting going to be realized?  How many more planning meetings will be convened before adequate NIH funds are committed to the performance of actual experiments? What does the delay say about the seriousness with which the NIH views the burden of migraine for Americans?

The immediate and complicating context of this problem is that the NIH budget is in near maximal limbo right now. In his State of the Union speech last month, President Obama declared that “we’ll invest in biomedical research” and his FY2012 budget calls for a $745M increase in the NIH budget which is 2.4% higher than the FY2010 level. This is actually just about enough to keep ahead of inflation. Meanwhile a funding bill (H.R. 1) is being debated this week in the US House of Representatives to roll back the NIH budget by $1.6B for what remains of this year (FY2011). This would immediately cut the NIH back to its 2008 funding level. We can only speculate about what further drastic cuts will soon be proposed in the House for next year (FY2012), and what legislative compromises will be made to avoid a government shutdown, ultimately to the detriment of health care research and the hopes of patients. In this bleak and uncertain climate, who can blame the NIH for not committing to new programs in headache disorders research?

Well, we can. This is not such a big request when seen in context. A full tripling of the current migraine research budget to $45M annually would still constitute less than 0.15% of the overall NIH budget. Furthermore, even in their leanest years, the NIH has always found room for the funding of some new initiatives.

Finally, this is a matter of inequity. Migraineurs should not be left to endure continued inadequate therapies and limited access to specialized care when focused research is being denied and represents the only viable prospect for lifting the burden. Migraineurs are entitled to equal access to the benefits of their own tax-payer funded research.

What can we do about this issue right now? The clear and immediate threat is to the NIH budget for the remainder of this year. Certainly, any reduction in the total NIH budget would make it that much harder for the NIH to prioritize migraine research.

Please contact your Member of the US House of Representatives immediately through this website and urge her/him to vote NO on H.R.1 and support continued full funding of federal biomedical research.

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Thank you for your participation and interest.

Comments

[Mike]

$15 million out of $18 million to Migraine research. Every other disorder gets to split 3 million. If $15 million is inconsequential, what does that make $3 million? You poor unappreciated migraine sufferers. What will you do?

As a sufferer of a headache disorder other than Migraine, I am incredibly tired of hearing about how bad migraine sufferers have it. You supposedly represent ALL headache disorders. How about tossing the rest of us a bone, eh? I am getting really tired of living off the scraps that fall off the migraine banquet table.

Alliance for Headache Disorders Advocacy indeed. More like Alliance for Migraine Advocacy.

[Bob Shapiro]

Mike, thanks for your comments. I hear your frustration and you raise a very important point. It is certainly not the case that migraine is our sole concern. Myriad other neglected headache disorders are no less in need of research funding and of better therapies. Our citing of migraine in our current communications with Congress is solely tactical. You’ve got to start somewhere with educating legislators. And it is far simpler to make the case about a disorder that they have heard of (even if gross misconceptions exist about it), for which compelling data are available to clearly illustrate the funding disparities, and (unfortunately probably most importantly) that effects a large percentage of their constituents, than it is to persuade them about fighting for a rare condition that is utterly unknown to them. We are very concerned about the nearly complete absence of research on such utterly disabling disorders as cluster headache, hemicrania continua, paroxysmal hemicrania, new daily persistent headache, RCVS, SUNCT, etc., etc. There is much to do and we’ve only begun. Please be assured that as our voice is increasingly heard we will be telling these stories too. For example, at the next Headache on the Hill in June, we intend to focus on post-traumatic headaches in our conversations with members of Congress. We are also very eager for a congressional hearing to finally be held on headache disorders, and we would plan to discuss publicly the full range of unappreciated headache disorders at that time. I’m sorry if you felt as if your concerns were neglected. There is no migraine banquet; all headache disorders are being insufficiently studied.

Bob Shapiro

[Cristy]

It seems that funding through the NIH for research pertaining to any particular disease is unreliable and inconsistent. With all of the headache disease evident in our returning service men and women, it seems to me that there should be a place for this research specific to post-traumatic headache disorder in the DOD CDMRP budget. These allocations are competitively awarded by the CDMRP for peer review research specific to the disease (no competing with other diseases). Research for several diseases (such as breast cancer, that has no direct link to military service) are funded through through these programs. The DOD budget is less subject to budget cuts. I wonder if one of the congressional supporters of headache and migraine research would champion such an inclusion?

~Cristy
(just returning from a "march on the hill" to advocate for continued funding of tuberous sclerosis complex through CDMRP)

[Teri Robert]

Christy,

We're certainly not ignoring possible research funding through the DOD programs. In fact, they had a chronic Migraine and post-traumatic headache section this year. Some of us served on the peer review panel for it. Out of all the grant proposals submitted, two were funded.

One of our points is that federal research funding amounts should be related to disease burden - not just the number of people who have a disease or condition, but the impact on their lives and health, the economic burden to our economy, and all the rest that goes into a true measure of disease burden. NIH funding seems to have absolutely no correlation to disease burden. So, while we're not overlooking other sources of research funding, we will continue to lobby for more equitable distribution of NIH research funds.

Make sense?
Teri Robert