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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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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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Even though the draft report from the Pain Management Best Practices Inter-Agency Task Force is vitally important, it’s understandable that people with pain may not have the time or energy for reading a 91-page report. With that in mind, we have pulled together some excerpts from the report to help the pain community understand its key tenets.

To read the full report or learn more about how to submit comment, click here.

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Pain patients need and deserve a seat at the table (even if it means bringing in a cot!). On Feb. 12, they finally got one.

“We are incredibly grateful to the Senate Committee on Health, Education, Labor, and Pensions (HELP) for including Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain, during its hearing on ‘Managing Pain During the Opioid Crisis,'” says Interim CEO Nicole Hemmenway. “We are even more grateful to Cindy for bravely sharing her story and perspective.”

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Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation, has been selected as one of four expert witnesses to speak at a hearing of the U.S. Senate Committee on Health, Education, Labor, and Pensions. The hearing, “Managing Pain During the Opioid Crisis,” will take place in Washington, D.C., next Tuesday, February 12, at 10 am EST.

Steinberg will be allotted five minutes to speak and will answer questions from committee members. One of her key messages: While we must ensure that Congress’ large investments to ameliorate harms from opioid use disorder are accomplishing that important goal, we also must correct unintentional harms suffered by Americans living with pain and ensure that policy reform going forward considers pain patients’ needs as well.

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A high-ranking federal task force has released its much-anticipated draft report with recommendations for improving the management of chronic and acute pain. The public is being asked to provide feedback on the report by April 1.

On Jan. 16, Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation and the only patient and patient advocacy representative on the task force, presented a webinar on the report, why it matters and how to weigh in.

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It can seem, sometimes, like the federal government is weighing in on pain care without understanding what patients go through. Fortunately, a new task force charged with creating recommendations for pain management has worked hard to include the patient perspective.

This task force, called the Pain Management Best Practices Intra-Agency Task Force, recently released a much-anticipated draft report with recommendations for managing acute and chronic pain. After a 90-day public comment period ending April 1, the report will be finalized and submitted to Congress.

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