I recently had the privilege of attending Headache on the Hill and the American Headache Society annual conference, essentially a three-day guided tour of Migraine and headache issues, as led by Teri Robert and Nancy Harris Bonk. Admittedly, I am far from a Migraine or headache expert. I am the Producer for the Migraine page here at HealthCentral.com, and I can honestly say that I knew very little coming into this job about Migraine.
This experience was eye-opening on many levels. Primarily, I saw this as an "immersion" tactic, similar to an immersion course for a foreign language where a student is "thrown into the deep end" and left to learn on the fly. I knew some of the terminology, some of the doctors' names, and some of the issues that were facing the Migraine community, but this conference really opened my eyes to the world in which Migraineurs live.
On the first day of our excursions, I "rode along" with Teri Robert, Brian Booth and Dr. David Watson of the West Virginia University Headache Center for Headache on the Hill. This event is used to help promote Migraine and headache awareness among members of Congress, where we lobbied for efforts to raise public awareness and research dollars. This was said by many to be the most successful Headache on the Hill throughout its four year existence; around 70 people, doctors and patients alike, visited the offices of elected officials and presented the case for investing more energy and money towards the cause. The key point: an estimated 12 percent of Americans suffer from Migraine alone, not counting other headache disorders, yet all Migraine and headache research put together receives less than one-tenth of one percent of the research budget from the National Institutes of Health. As set in the mission statement of the event, this has to change.
Though there were certainly mixed reactions from the individuals we met with - I attended meetings with the staffs of West Virginia Senators Jay Rockefeller and Joe Manchin - the movement appears to have gained some traction. We were certainly not introducing these topics to those on Capitol Hill. Reports from others who participated in the event felt similarly - ground may finally be made. Unfortunately, as is the nature of the political process, we just have to wait and see.
The second and third days of the headache immersion crash-course were spent at the 53rd Annual Scientific Meeting of the American Headache Society, a conference for the practitioners of headache medicine. I had the privilege of spending the days with HealthCentral's Migraine team, Teri and Nancy Harris Bonk. We attended seminars on a variety issues, ranging from abuse during childhood as a possible cause of Migraines (and other conditions) to Medication Overuse Headache to the genetics of Migraines. Due to my inexperience, some of the topics were way over my head (and any use of the word "thalamus" going forward will certainly give me goose bumps), but the guidance and education provided by my hosts was invaluable.
I walked away from this conference with a new-found knowledge and appreciation for this field. The expertise that surrounded me was incredible - these really were the best and the brightest in the field having a debate about treatment options for Medication Overuse Headaches, among other issues. I learned some very interesting facts - did you know that only 37 percent of Chronic Migraine sufferers are employed full-time? - and got to tap the brains of true thought-leaders in a very important industry.
I would like to extend a personal thank you to some of the doctors who entertained my questions and helped educate me: Dr. Richard Lipton, Dr. David Watson, Dr. Peter Goadsby, Dr. David Dodick, Dr. Roger Cady, Dr. Elizabeth Loder, Dr. Alan Rapoport, Dr. Rob Nicholson, Dr. Bill Young and Dr. John-Claude Krusz. I had only seen the names on research reports, or heard them referenced by Teri, yet these were some of the nicest, most accommodating people I have met. The nature of the conference was very friendly and social despite the weight of the material being addressed.
I also want to stress what it is like to spend time with Teri and Nancy. To some, they may just be the community leaders or semi-anonymous writers on a web page. In reality, they are some of the most genuine, passionate people on Migraine awareness. I cannot speak enough about what it was like to go around and have every doctor, from the President of the AHS and down the line, approach our group and give warm greetings. A number of doctors took the time to pull me aside and explain how important it is to this movement to have engaged patient advocates present. Teri and Nancy truly were rock stars at this meeting. I urge everyone (myself certainly included) to take full advantage of the resource that is available on MyMigraineConnection.
Headache on the Hill participants
Published On: June 17, 2011