Monday, February 17, 2020

Headache on the Hill: Behind the Scenes

As I began writing about my Headache on the Hill 2020 experience, I found a post that was written but never posted from last year's event. The following post is from 2019, though much of it is timeless.

Photo by Ian Schneider on Unsplash
In writing about my experience and the asks of Headache on the Hill (HOH) 2019, I realized that there's another side that needs to be shared.

Every person that went through the process to participate in HOH has their own story of the event. Some people weren't able to make the trip because of health, financial, or other reasons. Some pushed to make the trip, but were then unable to attend training and/or their meetings on the Hill because of health. Some pushed to participate, and then crashed hard afterward.

Headache diseases can be unpredictable. And, everything that participating in a lobbying event like HOH entails adds up and can be difficult to do while living with the uncertainty of chronic health conditions.

Sometimes you can push through, and sometimes you can't. There is no shame in that. Oh! But, I know that those unable to attend their meetings were overwhelmed by enormous emotions.

Traveling alone

I haven't traveled much alone, since I became chronic after my car accident in 2008. My husband and I have traveled, but my only solo travel has been to visit and stay with family. Attending HOH was the first non-family related travel that I ventured out on my own. I was both excited for the independence and anxious about managing on my own. Knowing that I had friends also attending HOH helped put my mind at ease.

The day before the HOH training was a travel day for me. I flew across the country alone. Time in a plane is hard on the body, and I was hurting badly, when I arrived in Washington, D.C. I made it to the hotel, checked in, and collapsed onto my bed. A friend of mine invited me to dinner and encouraged me to come, despite my exhaustion and pain. I appreciated being around people that get it, and I know that my body needed an actual meal after a day of snacking. I made it back to my room after dinner, but I was completely spent. The weather outside was worsening, and my head and body pain mirrored that.

Reaching out for support

I reached out to my sister, in tears. The exchange of messages revealed the spiral that pain often takes me on.
"When I hurt, my brain catastrophizes. I'm trying to not be overcome with thoughts about not being prepared tomorrow, should I take meds today, if I take today I can't take more tomorrow, etc... It's just a spiral I go through. It's hard."
My sister doesn't experience migraine herself. She has a truly beautiful heart, though, and has taken note of things that I've mentioned help me in the past. She recommended heat... all I had were hand warmers, but she encouraged me to use them to try to help manage the pain (specifically my neck pain).

One thing that I appreciated was that she made a couple simple recommendations (heat and ice), which can sometimes slip my mind. She acknowledged what she wasn't equipped to guide me on. Through it all, she offered me what I needed most... herself. Knowledge that I wasn't alone. Prayers being sent up on my behalf. Reminders that my my painful groans are wordless prayers that reach our Father, when we cannot find the words. Sharing a beautiful song to speak truth to my heart in a way that it could hear it. The song she sent on that night: Fear is a Liar by Zach Williams.

The person that was supposed to be my roommate wasn't able to make it because of a status migraine, but she did her best to try to help from afar... even going so far as to try to get some supplies delivered to me to help me through the attack.

I ended up treating the migraine attack, and made it through the night. My mind and body felt the effects of the battle that had raged on the previous day, but I was able to attend the training day. After training, I gave my body rest and quiet.

The day we went to the Hill for our meetings, one of the people in my group was having a bad migraine attack. I offered support in the ways that I was able to, and checked up on him throughout the day. We shared that he was missing the day's meetings due to a migraine attack, which highlighted the impact of this disease.

I've observed, heard others' stories, and experienced first-hand, the love and support that this community has among its members. There is an often unspoken understanding that we all experience pain and other symptoms, allowing for deeper connections and support in ways that can feel like home. There is such great power and hope in knowing that we're not alone.

“Give your weakness to one who helps.” - Rumi

Saturday, February 15, 2020

Headache on the Hill 2020

This week, I joined a group of 174 advocates from 45 states in Washington, DC at the 13th annual Headache on the Hill lobbying initiative, which is organized by the Alliance for Headache Disorders Advocacy (AHDA).

2020 Headache on the Hill
This was my second time participating in Headache on the Hill (Headache on the Hill 2019: My Experience). We spent Monday in training and preparing for our Hill visits. On Tuesday, we loaded onto buses to head to the Capitol for a group photo, before splitting up to head to our congressional meetings.

Team Arizona
Team Arizona

The group for Arizona was made up of six amazing advocates: Kerrie Smyres, Dr. Amaal Starling, Amy Tees, Jenn Tingwald, Jamie Valendy, and Don Vanderpool.

We had a full schedule, meeting with the offices of: Senator Kyrsten Sinema, Senator Martha McSally, Representative Greg Stanton, Representative Ruben Gallego, Representative Paul Gosar, Representative David Schweikert, Representative Ann Kirkpatrick.

Our meetings went well, and we were able to make some connections with the staffers we met with. I never cease to be amazed at the prevalence of headache disorders. Everyone has some connection to them. It reminds me that my voice and story speak for so many others that live with migraine or other headache disorders... and that gives me a push to continue advocating.

Migraine Impact

The impact that migraine has on individuals, families, and society is profound. Sharing my story with legislators gives a face to the disease, while sharing statistics speaks to the pervasiveness and burden of migraine and other headache disorders. 

Migraine is a prevalent and serious public health issue:
  • Migraine is the 2nd leading cause of disability in the United States (1).
  • 47 million Americans will have migraine attacks this year (1).
  • 5 million Americans with migraine will have 10 or more days with headache per month (2).
Migraine is part of the Chronic Pain Crisis in the United States:
  • There are more than 1.2 million emergency department visits for migraine annually in the United States (3).
  • 59% of emergency department visits in the United States for migraine include opioid treatments (2).
  • Opioids are not indicated for the treatment of migraine (4), and opioid use may increase the frequency and severity of migraine attacks (5).
Migraine disease management requires patient access to headache medicine physicians:
  • At least 8 headache medicine physicians are needed per 100k people with migraine (6).
  • There are currently only 1.2 certified headache medicine physicians per 100k people with migraine in the United States (7).
There are only 574 headache specialists in the United States (6). Given the prevalence and burden of all headache disorders, the disparity of current and needed headache specialists is devastating.

The 'Asks'

The United States is facing a huge shortage of doctors, including specialists (8). The Opioid Workforce Act H.R.3414 / S.2892) would fund 1,000 new physician training positions in addiction medicine, addiction psychiatry, and pain medicine.

However, there is a problem with the bill language. It explicitly supports "approved residency training programs in... pain medicine." However, residency training programs do not exist in pain medicine. There are only approved fellowships in pain medicine. There is also no specific mention of headache medicine, which also has only fellowships.

The asks:

  • Urge amendment to H.R.3414 / S.2892 to ensure support of US physician training in:
    • ACGME-accredited pain medicine fellowships
    • UCNS-accredited headache medicine fellowships
  • Co-sponsor the bill and support pain medicine and headache medicine fellowships.

Advocacy Work

Taking part in advocacy work is an important part of my journey living with chronic pain. Being surrounded by others that are passionate about coming together as a unified voice for all people living with headache disorders fills me with hope. There is power in sharing our stories and making connections with others. I'm honored to have been able to participate in Headache on the Hill, again; and I look forward to continuing to do so. 

"Unity is strength... when there is teamwork and collaboration, wonderful things can be achieved." 
- Mattie Stepanek

(1) GBD 2016 Headache Collaborators (2018). Global, regional, and national burden of migraine and tension-type headache, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. The Lancet. Neurology, 17(11), 954–976.
(2) Blumenfeld, A., Varon, S., Wilcox, T., Buse, D., Kawata, A., Manack, A., Goadsby, P., Lipton, R. (2011). Disability, HRQoL and resource use among chronic and episodic migraineurs: Results from the International Burden of Migraine Study (IBMS). Cephalalgia, 31(3), 301–315.
(3)   Friedman, B. W., West, J., Vinson, D. R., Minen, M. T., Restivo, A., & Gallagher, E. J. (2015). Current management of migraine in US emergency departments: An analysis of the National Hospital Ambulatory Medical Care Survey. Cephalalgia, 35(4), 301–309.
(4) Loder, E., Weizenbaum, E., Frishberg, B., Silberstein, S. and (2013), Choosing Wisely in Headache Medicine: The American Headache Society's List of Five Things Physicians and Patients Should Question. Headache: The Journal of Head and Face Pain, 53: 1651-1659.
(5) Thorlund, K., Sun-Edelstein, C., Druyts, E., Kanters, S., Ebrahim, S., Bhambri, R., Ramos, E., Mills, E. J., Lanteri-Minet, M., & Tepper, S. (2016). Risk of medication overuse headache across classes of treatments for acute migraine. The journal of headache and pain, 17(1), 107.
(6) Begasse de Dhaem, O., Burch, R., Rosen, N., Shubin Stein, K., Loder, E. and Shapiro, R.E. (2020), Workforce Gap Analysis in the Field of Headache Medicine in the United States. Headache: The Journal of Head and Face Pain, 60: 478-481.
(8) The Complexities of Physician Supply and Demand: Projections from 2017-2032, AAMC, April 2019.

Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.