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Headache On The Hill 2013: Perseverance Will Pay Off

A wave of patriotism washes over me as I sit here in the café in the basement of the Cannon House office building in Washington, DC. I’m waiting for my first meeting of the day for “Headache on the Hill 2013”. I just left the steps of the Capitol Building where some 60 plus other members of the Headache on the Hill delegation just took a group photo. If you have never been to our nation’s capitol in the spring, you must add it to your to do list.

After a long winter and unusually cold spring here in the northeast, this might just be the finest day we have had all year weather-wise, and the capitol city is resplendent with cherry blossoms, blooming flowers and signs of spring everywhere. The sun shone upon us as we posed in front of the Capitol building, which by the way, is one of the most beautiful buildings I have ever seen. Last year’s Headache on the Hill (my first) was held on a notably cold day, so the contrast from year to year is striking.

But the dedicated team of patients, physicians and other people interested in furthering the cause of those impacted by disabling headaches makes this trip every year to talk to members of congress about the overwhelming need to increase funding for headache disorders.

We spent yesterday being briefed by Dr. Bob Shapiro and others on the legislative environment and on the key issues that we are here to discuss with legislators. The fact is that although migraine and headache are among the most disabling conditions in terms of a common metric called DALYs, which speak to the time lost due to disability, they are grossly underfunded by the National Institutes of Health (NIH) and other federal funding agencies.

To impact change at the federal government level is an act of patience and perseverance. During the program yesterday the HOH leadership team outlined for us delegates the labyrinthine process of how budgets are appropriated and funded and how it is the committee members and/or chairmen of both the appropriating and authorizing committees that we need to try to reach and influence. Not that all members of congress aren’t important, but some are more important than others.

We were briefed on our “asks” (specific elements that we would ask the member of congress to do) and given instructions on the etiquette and logistics of meeting members of congress and/or their staffs. They did inform us how young some of these staffers (called “L.A.s” or Legislative Assistants) can be. Having been here last year I must say that’s true. I admire the hard work and dedication of these young people who work so tirelessly to support their member of congress. Often, we meet with an LA who has specific responsibility for health care. It is his or her job to understand the issues, sort through the myriad of topics and to brief their boss on all the various, sometimes conflicting, priorities.

So we will now spend the day in small groups divided up by geography to call on the offices of members of the house and senate. Sometimes the “member” (the actual congressman or woman) will be there and sometimes we will meet only with the LA. Meetings can take place in offices, waiting rooms, cubicles or hallways and are often brief and to the point. When I think of how many other groups are in line before and after us, there to discuss issues that are just important to them as headache is to us, it’s easy to see why this is an act of perseverance. But it does pay off, and we must continue.

Diana, Ellen, and Teri who all serve as patient advocates here on join me today in Washington, although they are in different groups representing their own home states. They will all write stories and blogs about their own experiences at Headache on the Hill and will cover some of the successes the program has delivered through persistence and hard work.

So stay tuned to for more updates from Headache on the Hill.


  • tucker
    6 years ago

    great job guys! I was just checking out my doctor’s office website for an upcoming appt and saw that my doc also went. How cool is that? I had no idea she did that. Her 4th year! THAT is why I travel 2+ hours for great care!

  • Ellen Schnakenberg
    6 years ago

    tucker, There are some truly AMAZING docs and patients who do this every year. Maybe you’d like to try to join us next year?!

  • lara
    6 years ago

    Go team!

  • Julie
    6 years ago

    I pray that the diligence will pay off and we finally get the recognition and funding needed for Migraine Disease treatments! And to hopefully start the process of getting this disabling disability the recognition it needs so that it is no longer “Invisible”. I’m with Wmianno-GO TEAM “M”.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Tim,

    Thanks, Tim. I wish I could be there with you all this year! I hope it all went well and I can’t wait to hear from Diana, Ellen and Teri!

  • Wmianno
    6 years ago

    Thank you for your dedication to “our cause”. It is remarkable to me that you have the energy and stamina to do all that all of you do! I’ll be lucky to drag my post-migraine hiney into the shower and to work today. GO TEAM “M”!

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