Back again for another installment of Headache on the Hill, the annual lobbying effort coordinated by the Alliance for Headache Disorders Advocacy (AHDA), over 60 physicians, patients and patient advocates suited up to raise awareness on Capitol Hill. Small groups - ranging from a single person to about four people - visited over 100 Congressional offices, both houses and both sides of the aisle.
Despite the contentious political situation - especially considering that this event took place on Day 2 of the Supreme Court hearing the case against the Affordable Care Act (or "Obamacare") complete with protesters and counter-protesters galore - this was a decidedly non-partisan event. This isn't about politics, it isn't about parties, it isn't about leadership or voting or politicians. This event, quite frankly, is designed to raise awareness for migraine and headache disorders and to request our elected officials to consider certain achievable goals that could help address the future of these conditions.
According to the AHDA guidelines given to us in our training sessions, we were to present three main issues about migraine and headache disorders: prevalence, cost and neglect. The figures really are staggering - roughly one in five Americans will have some form of migraine this year, and 75 percent of those people are women. One in 25 Americans, or roughly 4 percent, suffers from chronic migraines, where headaches last more than four hours and occur more than 15 times per month. This 4 percent accounts for roughly 40 times the number of Americans who are diagnosed with breast cancer in a year. Among Iraq and Afghanistan war veterans, 37 percent of men and 57 percent of women reported ongoing migraine with a deployment history of concussive injury and a pre-deployment history of migraine.
From a cost perspective, headache disorders cause $31 BILLION in economic costs each year. This includes disability, health care, lost productivity in the work force and countless complications that are linked to headache disorders. For the number of individuals affected and the amount of economic impact, the neglect by both the government and the scientific community may be the most troubling aspect of this analysis.
Consider that headache disorder research accounted for .07 percent - that's seven-one-hundreths of one percent - of the NIH budget in 2011, amounting to $21 million. With no money for effective research, no new drugs are in development nor is the condition being adequately studied. In fact, there has been one single innovative drug (sumatriptan) developed in the last 50 years. No drugs have been developed for cluster headaches, as the NIH has funded no research on it in the past 25 years.
We took to the Hill to discuss these points with staff for the Representatives and Senators. We wanted to hammer home these figures - migraine and headache disorders hurt so many people yet receive little to no attention. We asked those on the House side for a Congressional hearing on migraine and headache disorders - the first ever for these conditions - so that light can be shined on this issue. Recent hearings have been held on Traumatic Brain Injury and Pain in America to stress the severity and social burden of these conditions; why can't there be a similar hearing for migraine and headache disorders?
In the Senate, not only did we request a hearing, but we also requested direct funds under the Congressionally Directed Medical Research Program, a $50 million sum allocated by the Department of Defense for a variety of conditions, of which migraine and headache disorders had been included in 2010 and 2011 but not in 2012. Though a small cut of a $50 million pot may not seem like a substantial amount of money to send at this issue, it is something.
I personally visited the offices of Rep. Paul Tonko (D-NY), Rep. Jim Moran (D-VA), Senator Jim Webb (D-VA) and Rep. Frank Wolf (R-VA). In each case, we met with a member of the staff (the legislative assistant on health issues in three of four cases) and expressed our points. Some meetings were better than others, as to be expected. Understandably, minority party candidates and those not sitting on the appropriate committees (HELP in the Senate and Energy and Commerce, Subcommitee on Health in the House) did not have the leverage to demand hearings. However, signing a letter to be sent to those on the committee was not out of the question in any of our meetings. Follow-up will be key, but if the results were similar across all participants of Headache on the Hill, the future may be promising for Migraine research and funding.
What you can do:
Contact your representative - let he or she know that this is an important issue to you. If you are so inclined, you can even include a copy of the letter from the AHDA to forward to the committee chairmen.
You can also sign the petition - currently 11,000 strong - to urge Congress to hold hearings on the impact of Migraine and headache disorders.
This issue needs to be brought to light, as evidenced by the aforementioned statistics. Really, truly - every voice matters in this campaign.
Alliance for Headache Disorders Advocacy. (2012). House of Representatives Leave-Behind. Retrieved from http://www.aan.com/globals/axon/assets/9406.pdf.
Published On: March 28, 2012