Headache On The Hill: One Advocate’s Journey

By Jeannette

Headache on the Hill is an advocacy event held annually on Capitol Hill and hosted by The Alliance Of Headache Disorders Advocacy with additional sponsorship by partnering organizations such as U.S. Pain Foundation. This year both my husband, Dennis, and I attended together. There were 150 advocates in total at Headache On The Hill 2018, representing 40 states.

Headache on the Hill is an important event for those advocating for chronic pain, migraine and headache disorders. Each year, advocates gather to support one another and bring about legislative action with their states’ Congressmen. Members must first apply and be accepted to participate in HOH each year, and then go through training and seminars to better prepare themselves for the Congressional visits.

This Year’s “Ask” – the Opioidsand STOP Pain Initiative Act

An “ask” is the actionable request we made to our Congressmen during meetings. This year, participants of Headache on the Hill asked representatives to co-sponsor Bill S2260/HR4733, also known as the “Opioids and STOP Pain Initiative Act of 2017.” The purpose of this bill is to improve the understanding of pain and increase funding for the discovery and development of safer and more effective treatment and preventative intervention for pain, migraine and headache disorders.

Advocates are requesting $5 billion in emergency appropriations over 5 years for new NIH (National Institute of Health) research to understand pain and develop safer, non-addictive, more effective treatment and preventative interventions. Furthermore, we want this to be used to discover and develop medical-assisted and opioid-overdose reversal treatments.

This bill should be a priority because thirty percent of Americans have chronic pain. (1) Chronic pain is a complex disease with many types. Back and neck pain, followed by migraine are the first and second leading cause of global disability (2). With few treatment options, 6.2 million chronic pain patients are prescribed opioids each year. (3)

According to the AHDA, the chronic pain and opioids crisis is the most costly healthcare problem ever. This crisis costs over $1.1 trillion per year, making it the most costly health care problem in our nation’s history. Pain costs $560 to $635 billion (4) and opioid addiction costs $504 billion. (5)The AHDA states that this is equal to the combined revenues of 4 of the largest U.S. companies or 5.6% of the U.S. government’s revenue.

The AHDA stated that NIH research for pain and opioids is a fiscal imperative. Reducing U.S. costs of pain and opioids by just 1% would save $11 billion per year. Development of novel, safe, effective and affordable chronic pain therapies wouldreduce pain, suffering, disability and Social Security Disability Insurance claims.

According to the AHDA, underfunding of NIH is a principal cause of the lack of pain treatment. NIH funded investigators are responsible for discovering new drugs, pharmaceutical companies develop them. Regardless of the impact of chronic pain in 2016 NIH funded 29 times more research for cancer than pain, relative to this economic burden. (1, 4)

Our Personal HOH Adventure

Our first official leg of HOH was the Advocacy Training. This was an extensive 3 hour training on advocacy issues and “Hill Visit” preparation. Most importantly, we met our New Jersey team with whom we would attend the congressional meetings.

The most essential part of the training was to have a clear understanding of the “ask.” An “ask,” as stated earlier, is the actionable request we were making to our Congressmen and Senators. We had to have a clear understanding of bill HR4733, aka “Opioids and STOP Pain Initiative Act of 2017” and ask our representatives to co-sign this bill.

Our New Jersey team of six individuals was made up of one person with cluster headache and 4 of us with chronic migraine; myself also having additional chronic pain conditions. The sixth was my husband, a health care provider and support person to someone with chronic pain and chronic migraine.

The second leg of Headache on the Hill were the “Hill Visits” or meetings with our NJ representatives. We had 6 meetings in total scheduled, with the offices of Senator Cory Booker, Senator Bob Menendez, Representative Frank Pallone, Rep. Leonard Lance, Rep. Josh Gottheimer, Rep. Chris Smith and Rep. Bonnie Watson Coleman.

At each office we told our individual stories and why Bill S2260/HR4733 is important to us personally. We described a narrative using our individual experiences.

The experience was positive, we were treated respectfully and felt heard. The majority of offices had positive responses.

For example, at the office of Senator Cory Booker, we met with Health Policy staff member, Kimberly Miller-Tolbert, who stated “this bill definitely seems along the lines of something the Senator would support.” At the office of Senator Bob Menendez, after meeting with Health Policy staff member, Doug Levinson, he stated, “I am going to run this upstairs, we should hop on this bill.” Marissa Kovacs, Legislative Director for Representative Chris Smith shared information about his involvement in the Rare Disease Community. Ms. Kovacs had quite a good understanding of the stigma that comes with invisible illness. She shared with us that she has a family member with debilitating chronic pain.

This journey on the Hill was not an easy one for myself or any of the advocates with chronic pain, migraine, cluster headache, etc. Due my chronic illness, Ehlers Danlos Syndrome (EDS), co-occurring conditions, and chronic pain, I accepted a mobility aid due to the substantial about of walking, as did others. This was a personal learning experience for me, about unapologetically accepting assistance when needed.

Regardless, my pain flared and several migraine attacks were triggered. I was not alone in this. However, we are fighters; we are used to getting knocked down and getting back up. We are used to fighting and advocating for ourselves. What was beautiful to see was 156 other advocates united in the fight, helping and supporting one another on this journey.


1.NIH. Estimates of Funding for Various Research, Condition, and Disease Categories. October 24, 2017. https://report.nih.gov/categorical_spending.aspx

2. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990-2016: a systemic analysis for the Global Burden of Disease Study 2016. The Lancet, 2017; 390: 1211-59. www.thelancet.com/journals/lancet/article/P11S0140-6736(17)32154-2/fulltext

3. Hwang, CS, et al. Trends in the concomitant prescribing of opioids and benzodiazepines, 2002-2014. Am J Prev Med. 2016; 51:151-160. www.ncbi.nim.gov/pubmed/27079639

4.Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. Institute of Medicine (US) Committee on Advancing Pain Research, Care and Education. The Economic Costs of Pain in the United States. Washington (DC): National Academies Press (US); 2011. https://www.ncbi.nim.nih.gov/books/NBK92521/

5.The underestimated cost of the opioid crisis. The Council of Economic Advisers. November 2017. https://www.whitehouse.gov/sites/whitehouse.gov/files/images/The%20Underestimated%20Cost%20of%20the%20Opioid%20Crisis.pdf

6. Kesselheim, AA, et al. The roles of academia, rare diseases, and repurposing in the development of the most transformative drugs. Health Affairs 2015; 34: 286-293. http://www.ncbi.nim.nih.gov/pubmed/?term=25646109

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