By Jeanette Rotondi.
The National Pain Report occasionally shares acts of activism by the chronic pain community. This is another example of advocacy, recently conducted with Congress in Washington, D.C.
Headache on the Hill is an advocacy event held annually on Capitol Hill and hosted by The Alliance of Headache Disorders Advocacy. It is an important event for those advocating for migraine and headache disorders. Each year, advocates gather to support one another and bring about legislative action with their states’ representatives. 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 chronic pain, specifically, was part of the actionable request being made to Congress. There were 156 advocates from 40 states at Headache On The Hill .
For five years now, I have been an ambassador with U.S. Pain Foundation which was a sponsoring organization of this advocacy. The organization has helped me find a voice in advocating for chronic pain solutions and a way to give my pain a purpose and a voice. It also sponsored both my husband, Dennis, and I, as well as several other colleagues to the event.
This year’s “ask” was particularly exciting to me because it united the migraine, headache disorder and chronic pain community on one initiative. We 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. In no way does the bill promote removing opioid treatment from patients benefiting from it.
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.
Let me say the obvious – With 30% of Americans having chronic pain, this bill addresses a huge audience and perhaps a bigger need. Some obvious data points that we shared:
• 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.
• With few treatment options, 6.2 million chronic pain patients are prescribed opioids each year.
• According to the AHDA the chronic pain and opioids crisis combine to create the costliest healthcare problem ever, a staggering $1.1 trillion per year. Pain costs $560 to $635 billion to treat while opioid addiction costs $504 billion.
The AHDA stated that more NIH research for pain and opioids is a fiscal imperative. To put it perspective, remember that in 2016 NIH funded 29 times more money for research of cancer than for pain.
Our HOH Adventure:
Our first official leg of HOH was a three-hour Advocacy Training. The most essential part of the training was to have a clear understanding of the “ask”, 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 team from New Jersey included six individuals, 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 myself, a person 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 and mostly received 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 patient advocates. Due to my chronic illness, Ehlers Danlos Syndrome (EDS), co-occurring conditions, and chronic pain,
I was very grateful to U.S. Pain Foundation, they made every effort in planning to help each of us have a successful outcome despite pain and physical limits. One such offering were mobility aids, due to the substantial amount of walking. I accepted a mobility aid, as did others. This was a personal learning experience for me, about unapologetically accepting assistance when needed. Asking for help, discussing limits is something I still struggle with. What I realized is by accepting help I got farther than I could get on my own.
Regardless of the amazing support, my pain flared and several migraine attacks were triggered. I was not alone in this. However, it was worth it, 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 150 advocates united in the fight, helping and supporting one another on this journey.
It’s too early to claim victory. Much work—staying in touch with legislators, creating other advocacy opportunities—needs to be done.
But if we as pain patients are going to have our point heard by elected leaders—it starts with this type of advocacy.
Editor’s Note: If you are advocating with a Congressional or state representative, please share your experience in our comments section, tell our audience how it’s going and what you plan to do next!