Educating Congress About Migraine: Headache on the Hill

There’s no question that lack of understanding about Migraine makes life more difficult for people living with Migraine disease. This lack of understanding, unfortunately, is still pervasive throughout our society. Members of Congress are no exception.

On June 1, 78 people from 35 states — patients, doctors, nurses, researchers, and more — gathered in Washington for Headache on the Hill. Organized by the Alliance for Headache Disorders Advocacy, Headache on the Hill is a lobbying event during which we visit the offices of our Senators and members of the House to educate them about the impact of Migraine and other headache disorders and ask them to do certain things to help with awareness, research funding, and more.

This year, we had three “asks:”

  1. We requested support for Congressional hearings about Migraine and headache disorders. Discussion in these hearings would include the severe personal, societal, and financial impact of headache disorders; the need for more research funding, and the potential roles of government and industry in conducting research. This “ask” was in the Senate and the House.
  2. We requested full funding of the Cures Acceleration Network (CAN), which would provide grants and contracts for early stage research to bring innovative break-though drug therapies and promote American industrial competitiveness. CAN is part of the Patient Protection and Affordable Care Act of 2010, but is not yet funded. This “ask” was also in both the Senate and the House.
  3. In the Senate, we asked for support for S.597 to add neurology to the list of medical specialties eligible for the primary care incentive created by the Affordable Care Act. This incentive is meant to cover doctors who provide services considered to be primary care — evaluating and diagnosing patients and working with them on their health issues — as opposed to performing surgical and other procedures. Many Migraine and headache specialists provide this type of care, and 85% of them are neurologists, so the concern is that the exclusion of neurologists will result in fewer doctors going into “headache medicine.”

In visiting the West Virginia Congressional offices, I was with Dr. David Watson of the West Virginia University Headache Center and Brian Booth. We visited the offices of Senators Jay Rockefeller and Joe Manchin and Representatives David McKinley, Shelley Moore Captio, and Nick Rahall. As is usually the case, we met mostly with staff members rather than the Senators and Representatives. We did, however, meet with Shelley Moore Capito, who was very gracious and promised to support Congressional hearings. Representative Rahall’s chief of staff also pledged support of Congressional hearings. We’ll have to wait and see what comes of our visits to the other offices.

A true high point of this year’s Headache on the Hill occurred they day before our Hill visits, during advocate training, when I met Julie Zellner McDonald and her husband in person for the first time. Julie is a Migraineur I met a few years ago in an online discussion forum. Julie has severe chronic Migraines, and when I first met her, she wouldn’t have been able to even consider traveling to Washington and participating. She and her Migraine specialists still have a great deal of work ahead of them in bringing her Migraines under control, but they’ve made enough progress that she was able to be there.

Seeing Julie there was so very exciting! To me, it was a sign of hope for all Migraineurs and demonstrated the value of patient education and support. I asked Julie for some comments on attending Headache on the Hill. She wrote:

“I have so many friends who also suffer with migraines and feeling like I could advocate not just for myself, but also on their behalf gave me a great sense of pride and joy…

It was an honor to be asked to attend. It was exciting to be able to meet people that I had only communicated with online up until that point and who I considered heroes, such as Teri Robert and Nancy Bonk. It’s all the information that Teri provides through the websites she manages that has kept me informed and given me even a remote sense of control over this illness. Plus, that information is how I found Dr. Young, who has finally given me a treatment plan that has provided enough relief that I felt comfortable traveling to DC in the first place…”

It was an exhausting, yet exhilarating and inspiring two days. We educated members of Congress and their staff about Migraine and other headache disorders while pursuing our “asks,” working to increase understanding and awareness. It was a productive way to start the month of June, which is National Migraine Awareness Month.

In Representative Shelley Moore Capito’s office:
Brian Booth, Teri Robert, Representative Capito, Dr. David Watson.

 

Headache on the Hill participants


This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (19)
  • Kittens Austin
    8 years ago

    Teri…
    I want to THANK YOU for all that you are doing…you a very special lady. People who don’t get these debilitating migraines don’t have a clue to what we are going through…I just got my shots today in the back of my neck…do they work? Very little…Has this summer been brutal for me? Yes….I hate the fact that I have to stay inside on a beautiful day and I know that so many others on here feel the SAME way…Like everyone on here…Good days and bad days…Thank you so much Teri <3.

  • April Kenney
    8 years ago

    Thank you so much Teri for being our voice in the politicial arena. You give us hope!

  • Teri Robert
    8 years ago

    You’re very welcome, April! Thanks for reading.

  • Kevin Drake
    8 years ago

    Thank you Teri, great work. Having a PFO closure I recently have been learning about.
    migraine’s, something I have had for a very long time without an idea of what triggered them. Keep rattling those cages on the Hill!

  • Kevin Drake
    8 years ago

    Better, I also started taking magnesium citrate which seems to help. Thanks for asking..

  • Teri Robert
    8 years ago

    You’re welcome, Kevin! How are your Migraines doing?

  • Whitney O'Neal
    8 years ago

    Thank you all for your dedication and passion! It is very comforting to know that we have advocates.

  • Teri Robert
    8 years ago

    You’re welcome, Betsy!

  • Helen Williams Lopez
    8 years ago

    Migraine’s are not just headaches! Frequently employers do not understand the difference. I have blind spots and lights iin my vision prior to a migraine, sometimes lose feeling in my hand and/or arm, and sometimes either cannot understand what people are saying or else cannot make sense when I talk. These events can last several hours — needless to say working during this is not an option. THEN I get the headache, nausea, etc which can last a couple of days. It has always astounded me that there is not more understanding about the impact of migraines — even from Doctors. I have had migraines for 45 years and they are not getting better. Thank you so much for trying to get Migraine Awareness out there.

  • Teri Robert
    8 years ago

    You’re welcome, Helen!

  • Betsy Blondin
    8 years ago

    Ditto from me — thank you Teri and to all of you who attended HOH this year and made these advocacy efforts on behalf of all migraine and headache survivors!

  • Anne-Marie Allen
    8 years ago

    I have been praying for this meeting…let’s hope they get IT and really give us some help. Thanks to the 78 people and especailly Teri for going to Washington and representing all us Migraineurs all over the U.S. Bless you.

  • Teri Robert
    8 years ago

    You’re very welcome, Anne-Marie.

  • Louise M. Houle
    8 years ago

    Fantastic! Thanks to all of you for your hard political work and determination. It gives me hope that the U.S. will be in the forefront of research that will hopefully one day provide greater chances for relief from chronic migraines and other persistant or refractory headache conditions. I hope someday to do the same kind of work here in Canada, so I’m reading these post with great interest. You are all an inspiration!

  • Teri Robert
    8 years ago

    Thank you, Louise, and you’re very welcome!

  • Kelly Richardson
    8 years ago

    I am so greatful that there are some people out there that actually understand that a migraine is NOT just a headache! My mother has suffered for years, and unfortunately, after I turned 30, mine have grown in frequency…my first real one was when I was 26. I remember that because we were on vacate in NYC. It’s a pain that you just can’t explain. Please keep up the great work and hopefully there will one day, be an understanding and a little more compassion for all that suffer.

  • Kelly Richardson
    8 years ago

    I know. Whe my mom first started having them, she thought she had a tomber! Because there was no education and very little info about migraines. One of these days…. 🙂

  • Teri Robert
    8 years ago

    Thanks, Kelly. We’ll definitely keep at this. We’re making progress, but we still have a long way to go.

  • Carla Fernandes Ceurvels
    8 years ago

    To date my migraines have cost me thousands of dollars on Dr. visits and medicines. I do not go on trips in fear of getting one of my crippling headaches while I am away on vacation. It really does run my life, and if they could actually find something that would relieve these monsters that would be the best thing in the world. I even feel guilty when I have to have my prescription refilled because I am embarrassed as being looked as a pill user. Which I am NOT! I need them for every day normal life. When I am out of medicine I cry and have anxiety that I will get a migraine. I, at one point, paid the pharmacy 279.00 dollars for 4 pills because my insurance would not pay due to the fact that it hadn’t been 30 days since my last prescription…Keep in mind that I only get 6 pills a month. Sometimes 1 migraine warrants more than one pill, not enough to alleviate the distress I am feeling with the migraine. Good luck on Capital Hill and I hope that they realize the severity of this life crippling disease…Thank you for standing up for all sufferers.

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