Migraine Advocacy, Headache on the Hill, and Meeting Julie

Teri Robert @trobert Health Guide
  • The impact of Migraine was a major topic on June 1 when a group of medical professionals and patients visited their Senators and Representatives for Headache on the Hill, an event organized by the Alliance for Headache Disorders Advocacy. A group of 68, representing 35 states went to address issues of great importance to everyone with Migraine and other headache disorders.

     

    We had three "asks," requests to make of our Senators and members of the House:

    • In both the Senate and House, we requested Congressional hearings about Migraine and headache disorders. Topics for such hearings would include the impact of these disorders, exploring the roles of government and industry in conducting research, the social and financial burden to our society, the need for more research and better treatments, and more. Just as the hearings held regarding Parkinson's resulted in better public understanding of the disease and a reduction in the stigma attached to it, we believe Congressional hearings could similarly help American citizens with Migraine and other headache disorders.
    • Also in both the Senate and House, we requested full funding of the Cures Acceleration Network (CAN), which would provide grants and  contracts for critical early stage research to bring innovative breakthrough drug therapies and promote American industrial competitiveness. CAN is included in the Patient Protection and Affordable Care Act of 2010, but has not yet been funded.
    • In the Senate, we asked for support for S.597, which would add neurology to the list of medical specialties eligible for the primary care incentive created by the Affordable Care Act. Many neurologists who are Migraine and headache specialists spend a great percentage of their time on exactly the type of care defined in the act - evaluating and diagnosing patients and working with them on their treatment regimens (as opposed to surgical and other procedures). Other specialties have already been included. There's concern that the exclusion of neurologists will negatively impact the already short supply of Migraine specialists.

    The West Virginia delegation included Dr. David Watson of the West Virginia University Headache Center, Brian Booth, and me. As is often the case, in both Senate offices I visited, the staff members we met with were interested and attentive. Whether we'll win the Senators' support remains to be seen. This is also often the case, waiting to see what happens after our visits. Two of our three visits to House offices resulted in promises of letters of support for Congressional Hearings from Representative Capito and Representative Rahall. All in all, a productive day.

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    In Representative Shelley Moore Capito's office:

    Brian Booth, Teri Robert, Representative Capito, Dr. David Watson

     

    I have to say that my favorite moment of Headache on the Hill did not, however occur on the Hill. It occurred the day before our Hill visits when we were all meeting to review information and learn more about lobbying. My favorite moment was when Julie Zellner McDonald walked into the room. You see, Julie has been one of our forum members here for quite some time, and she has struggled mightily with severe, chronic Migraines. For so long, Julie couldn't even have considered traveling to Washington to participate in such an event, yet there she was! Her darling husband was there at her side, and it was a pleasure to tell him how wonderful he is to be so supportive of her.

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    After we'd returned home, I asked Julie if she'd please email me a quote that I could share with you about her experience. Here's what Julie had to say:

    "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 overwhelming to learn all the ins and outs of Congressional advocacy, and all the information we needed to share to have the best chance at getting a positive response to our “asks.” When I heard the statistics about how many Americans really do suffer with migraines each year, and realized that little ole me was one of 68 people there to advocate on their behalf that day, well, yes. Let’s just say, overwhelming! But, it was an amazing experience overall. Traveling is tough on me because of migraines, navigating Capitol Hill and Washington, DC is tough, being up early and having a long day wasn’t fun, but it was 100% worth it. I have no idea what the outcome of our efforts will be, but I know I went and I asked for something that really, really matters.

     

    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 also exciting to meet and have a chance to correspond with an expert in the field like Dr. Robert Shapiro, who is one of the driving forces behind the AHDA. I felt like I had the opportunity to be in the room with the people who were somehow going to change my life and the life of other migraine sufferers someday through all the work they do.

     

    I’m always inspired and humbled to hear stories of other migraine sufferers. I had the chance to meet quite a few of the other patient/advocates there, and it was kind of amazing the immediate bonding that occurred. We all came from different parts of the country, with different backgrounds and life stories, but we shared a common bond that almost made us family. Every time someone told me their “migraine story”, I wanted to hug them. Maybe that’s a Southern thing, I don’t know for sure. I was reminded again of how comforting it is to know that I am not alone, yet how painful it is to hear how much others have suffered and I wondered again why it has to be this way, and why more isn’t being done to ease and prevent our suffering. I was thankful that others took the time to come to DC. I know many of them didn’t feel much better than I did some of the time."

    It's a bit difficult to explain the experience of Headache on the Hill. It could be described in many ways - exciting, frightening, exhilarating, exhausting, necessary, worthwhile.

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    Julie's presence was a shining example of why the AHDA exists and why there are web sites like MyMigraineConnection. We must continue to lobby for the awareness, research funding, and other needs of people with Migraine and other headache disorders. We must also continue to offer educational information, support, and encouragement to those who are feeling overwhelmed. I remember telling Julie early on to remember two things - She wasn't alone, and there IS hope. It didn't happen overnight, but she's making progress in managing her Migraines and getting her life back. If you're feeling overwhelmed, I hope her experience strengthens and encourages you.

     

    Live well,

     

     

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    Last updated June 20, 2011.

Published On: June 20, 2011