At first glance, the term “Headache on the Hill” may not seem to describe anything unexpected or extraordinary in the daily grind of business in our nation’s capitol. But a few weeks ago, for one day, I witnessed it being used in an entirely different way all over Capitol Hill–with wholehearted enthusiasm and drive, in an actual concerted campaign.
I’m referring to the largest lobbying effort to date to urge legislators to finally fund federal research programs on migraine, primarily a women’s disease, which has gone virtually ignored to the point of absurdity by the National Institutes of Health. The sponsor of Headache on the Hill is the 3-year-old unsexily named Alliance for Headache Disorders Advocacy, an umbrella group of nine headache organizations. It modeled the effort, its third so far, on the successful Neurology on the Hill campaigns which began in 2003, initiated by the American Academy of Neurology.
In the whirlwind and exhausting single day of Headache on the Hill–which I can describe as a combination sales pitch, civics tutorial and speed-dating marathon–49 lobbyist-constituents from 35 states made our case in 144 offices of our own senators and representatives. In six short meetings with disconcertingly young congressional staffers, my headache and I served to help represent the great state of Illinois.
This campaign is one of several encouraging factors aligning to build awareness of and knowledge about the dearth of public funding for migraine, especially when compared to other diseases causing similar levels of disability. Ironically, a major factor in the visibility of the cost of this mostly women’s illness could be the experiences of mostly men returning from the blast-heavy battlefields overseas: A recent study reveals that 36 percent of them report a likely migraine problem upon being discharged from service. The day before HOH, I sat in on a congressional briefing about the epidemic problem that GIs are facing with migraine, which is the leading cause of lost duty and medical treatment sought. (I’ll write about this in detail in a future blog, as well as other women’s health issues.)
We were boosted in our lobbying efforts by the support of a real famous person, Cindy McCain, so far the most prominent migraine sufferer to come out of the closet to advocate personally for federal research dollars. She phoned in a brief greeting to us at our training session from the Arizona campaign trail, and since last fall, she has been speaking out nationally about the issue, in everywhere from the New Yorker to the less skeptically toned People, which featured a cover story. Pain makes interesting bedfellows, which I’ll gladly take even in the form of Republican beer heiresses.
I wasn’t interested in Headache on the Hill just because it was a good cause for womankind; I was most enthusiastic about its potential to ameliorate the pain of one woman in particular: yours truly. This year, I’m marking my nearly 20-year anniversary with a very unwelcome companion, a constant headache.
And that’s not as freakish as it might seem. About four percent of the population have what doctors term “chronic daily headache” (CDH). About half of those folks are seriously disabled with the subtype of “chronic migraine,” which means they also have migraine attacks of severe pain, visual disturbances and nausea, in addition to the continual background pain. Those who suffer from CDH are still basically medically confounding to doctors, and have fewer means to speak out publically about it, as the least educated and with the lowest incomes.
But no matter what the diagnosis, chronic headaches are a major problem in this country and beyond, and are a surprisingly huge cause of disability and lost work time. The World Health Organization estimates that migraine causes more lost years of healthy life in the U.S. annually than multiple sclerosis, epilepsy, ovarian cancer, and tuberculosis combined; however, the combined NIH research funding on those four disorders is more than 117 times greater than that of migraine.
As I said, it’s well known to be experienced mostly by women, who account for 75 percent of the estimated 60 million migraine sufferers. And that large female patient pool is a reason why, as doctors now openly acknowledge, funders have neglected migraine in this country and in Europe.
I have much more to say about how research funding affects our personal day-to-day experience with such disabilities–and what YOU can do to make change. Stay tuned for that in my next post.
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