Headache On The Hill 2018

Last Tuesday marked the 11th year of Headache on the Hill and my first time as a participant.  Headache on the Hill (HOH) is an annual lobbying event put together by the Alliance for Headache Disorders Advocacy (AHDA).  Participants include health professionals, migraine and cluster headache advocates, patients and caregivers.  They come together with specific requests or "asks" for Congress.  The asks usually focus on raising awareness of headache disorders in order to impact the increase in NIH funding for research into headache, cluster, migraine, and pain.

I was extremely excited to be a part of such an important advocacy event.  This is the epitome of what I do and to finally advocate on this level was really amazing.  Don't get me wrong, I was very nervous! I had no idea what to expect.  It was all very intimidating at first.  I mean, Congress!  What pain patient gets to speak with their Members of Congress? Talk about a humbling day!

This year's event was the largest HOH with 145 participants from 39 states visiting 212 Congressional offices.  This year's ask was to get our Members of Congress to co-sponsor the Opioids and STOP Pain Initiative Act of 2017 (S.2260/HR.4733).  This bipartisan bill would provide $5 billion emergency appropriations over five years for new NIH research to understand pain, discover and develop non-addictive pain therapies (pharmacological or non-pharmacological), and discover and develop medication-assisted and opioid overdose reversal treatments.

Headache on the Hill
February 13, 2018
©Alliance for Headache Disorders Advocacy

Headache on the Hill takes place over two days.  The first day comprises of an issue briefing and advocacy training session.  We meet with the other people in our group, which is delegated by state.  Day two is when we visit the offices of our state and district congressional delegation.

My group included myself, my dear friend Rosa Sundquist who is migraine patient, Sarah Stone who is a Health Communications Consultant and migraine patient, and Dr. Carrie Dougherty who is a headache specialist, assistant professor of neurology at MedStar Georgetown University Hospital (MGUH) , and the program director for MGUH's Headache Medicine Fellowship Program.

From L to R:  Sarah, myself, Dr. Dougherty,
and Rosa at our first meeting of the day
with Rep. Barbara Comstock's office

CBD oil, coffee, morning and
pain meds

The morning of HOH I woke up with such an excruciating migraine.  I had no idea how I was going to make it through a day filled with back to back meetings and lots of walking.  So my day started off with meds, coffee, and lots of praying that the pain would subside.

We had a total of eight meetings, beginning at 9AM and the last one was scheduled for 4PM. The offices are not all in the same building. The House and Senate office buildings are on opposite sides of the Capitol building, so there was a lot of walking involved.  It took about 10-15 minutes to get from one side of the campus to the other, plus the time it took to get through security at each building.  Time management is very important on a day like HOH!  By the end of the day we had reached almost 15,000 steps.

Circled buildings are where our meeting took place

Our meetings were with the following Congressional staff members:

• Allison Feikes, Healthcare Legislative Correspondent, Office of Rep. Barbara Comstock (10th-VA)
• Mary Brazier, Health Policy Staff, Office of Senator Mark Warner (D-VA)
• Brent Robinson, Deputy Chief of Staff, Office of Rep. Rob Wittman (D-VA)
• Maggie Ayrea, Health Policy Staff and Gavin Proffitt, Legislative Correspondent, Office of Rep. Bob Goodlatte (6th-VA)
• Noelle Jones, Health Legislative Assistant, Office of Delegate Eleanor Holmes-Norton (DC-At-Large)
• Lauren Covington, Health Legislative Assistant, Office of Rep.Gerry Connolly (11th-VA)
• Kristin Seum, Legislative Director and Legislative Counsel, Office of Rep. Morgan Griffith (9th-VA)
• Courtney Segman, Health Legislative Fellow, Office of Senator Tim Kaine (D-VA)

All of our meetings went really well.  Everyone we met with really listened to our patient stories and how important it is for pain to be better understood so that better, safer and more effective treatments could be developed.  It was great having a combination of patients and healthcare professionals in the meetings because all sides of headache, migraine, and cluster were represented and vocalized.

By the end of the day, we were all exhausted but also felt like it was well worth the discomfort, pain, nausea, fatigue, and whatever else we all were experiencing.  It is not easy taking on such a feat with a headache disorder.  Triggers are everywhere and cannot always be avoided.  I was armed with my TheraSpecs, pressure relieving earplugs, essential oils, emergency pain and anti-nausea meds, and lots of water.  Thankfully, I made it through the day without my head pain spiking.

The following morning was another story.  I woke up with my pain ranging between an 8 and 9.  The day before definitely took its toll on me.  And boy was I sore!  Capitol Hill is just that...a hill.  So we all got a really good workout that day.  Although I was in tremendous pain, I felt as though it was so worth it.  HOH is such a rewarding and humbling experience.  There's nothing like being able to speak directly to your Members of Congress or their staff and explain why you need them to listen and take action.  And to be the voice of so many Americans who could not participate was such an honor.  I'm super excited to do this again next year.

For those of you who could not be there this year, you can still support our ask of co-sponsoring the Opioids and STOP Pain Initiatives Act by sending a pre-formatted email to your members of Congress.  ADHA has an online tool you can use here.

Below is a slideshow of all of the pictures we took throughout the day.  If you'd like to learn more about Headache on the Hill and the history of the Alliance for Headache Disorders Advocacy, visit their website here.