Voices from the Hill

By Jorie Logan-Morris and Jeannette Rotondi

Every year in February, advocates for migraine and headache disease come together in Washington, D.C., for an event known as Headache on the Hill (HOH). HOH is organized by the Alliance for Headache Disorders Advocacy (AHDA) and has been running now for 12 years.

During HOH, advocates of all kinds — migraine and headache patients, caregivers, doctors and specialists, and more — work together to lobby and meet with Congress, presenting important legislation and “asks” related to migraine and headache disease in hopes that lawmakers will support our requests. This in turn helps bring more national awareness to migraine and headache disease and ultimately further supports the millions who suffer all across the country.

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Last week, the Consumer Pain Advocacy Task Force (CPATF)–a coalition of pain patient-related nonprofits, including U.S. Pain Foundation–submitted a letter to Department of Health and Human Services (HHS) Secretary Alex Azar regarding the draft report on pain released by the HHS Pain Management Best Practices Inter-Agency Task Force.

The CPATF also plans to submit a longer letter to the federal docket with more specific feedback by April 1.

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By Reese Jones

Rare Disease Day was last month, but it’s always a good time to raise awareness about unique disorders.

Paroxysmal extreme pain disorder, or PEPD, is a little-known and discussed illness — even among people that are affected by chronic pain. Characterized by skin redness, flushing, and severe pain attacks in various parts of the body, this debilitating condition has been documented by scientific literature and only currently affects 80 individuals, according to a report by the National Library of Medicine. Like many other rare diseases, PEPD is generally thought to be caused by a genetic mutation. This condition often manifests from infancy all throughout a patient’s life, while other studies have pointed to the likely possibility of it being felt even in utero.

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Belleville, Illinois, March 12, 2019 (GLOBE NEWSWIRE)Allsup, the nation’s premier disability representation company, is participating with the U.S. Pain Foundation to present an online seminar called, “Navigating Employment Challenges and When to Apply for Social Security Disability,” on Tuesday, March 19. The webinar provides an overview on assessing chronic pain’s effects and the ability to work, making choices about work and finances, working with medical providers, understanding eligibility for Social Security Disability Insurance (SSDI), and applying for SSDI with chronic pain conditions.

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U.S. Pain Foundation has partnered on a survey with Tamadé, a Virtual Reality (VR) company that has developed a program for chronic pain, to learn more about how pain impacts your life and how VR might help.

The survey takes approximately 20 minutes to complete. Everyone who takes it will be entered to win one of 30 $10 gift cards to Amazon. (Remember to use Amazon Smile, which automatically donates 0.5% to a charity of your choice, if you win!)

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By Deborah Ellis, ND, CTN

If you’re like me, and millions of others, you’ve probably suffered with chronic pain for a year or longer. Chronic pain affects 50 million Americans, 20 million of whom have high-impact chronic pain. It has been linked to increased risk of major mental conditions including depression, anxiety, and post-traumatic stress disorder. Science understands a body in chronic pain continually sends stress signals to the brain, leading to a heightened perception of not only the pain itself but also the perceived level of threat. It’s a vicious cycle that’s hard to break or control.

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Did you know that pain is the leading cause of long-term disability in America? During a webinar on March 19, we’ll be talking about the challenges of working with chronic pain and considerations for applying for Social Security Disability Insurance (SSDI). Our featured speaker is Rebecca Ray of Allsup, one of the leading national providers of SSDI representation.

Through the webinar, you’ll learn about:

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In late December, a high-ranking federal task force released a draft report with recommendations for improving the management of chronic and acute pain nationwide. The landmark report will be finalized and submitted to Congress at the end of May. The pain community is being asked to give feedback on the report by April 1–less than a month away.

“It is vital that people with pain weigh in,” says Cindy Steinberg, National Director of Policy and Advocacy, who was the only patient and patient advocacy representative on the task force. “This report could change people with pain’s lives for the better. It promotes a multidisciplinary, multimodal approach to pain care and addresses barriers to accessing effective treatment. It says that treatment decisions should be made on a case-by-case basis that considers the unique situation of each patient. It addresses the stigma around chronic pain and lack of public, provider and patient education on pain management. It provides a comprehensive view of the gaps in pain care in the United States today and detailed recommendations on how to ameliorate them.”

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From Feb. 10 through 13, representatives from U.S. Pain Foundation proudly participated in Headache on the Hill (HOH) in Washington, DC, for the second year in a row. Organized by the Alliance for Headache Advocacy, HOH is an event that bring together patients, caregivers, and providers to advocate for people with headache, migraine, and cluster diseases at the federal level.

This year, a total 160 advocates attended, including 23 individuals–a combination of staff, volunteers, INvisible Project participants and individuals from Chronic Migraine Awareness–sponsored by U.S. Pain Foundation.

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Photo courtesy of HELP committee

On Feb. 12, for the first time in years, Congress held a hearing on chronic pain. We were proud to have Cindy Steinberg, National Director of Policy and Advocacy, as one of the four selected witnesses who gave testimony. As a reminder, you can watch a recording of the hearing here.

Hearing makes headlines

The hearing–and Steinberg’s remarks in particular–received a multitude of coverage at the national and local level. Here are some of those articles.

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