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The new report on pain management, mandated by Congress and finalized on May 30, is an important milestone for people with pain. The report emphasizes the need for access to affordable, multidisciplinary care, and urges an individualized approach to pain management–instead of broad one-size-fits-all limits and policies.

But how do we move it forward from a piece of paper to actual change?

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The new report on pain management, mandated by Congress, has the potential to improve pain care for millions of Americans. But how do we move it forward from a piece of paper to actual change?

To learn how you can help, please join us this Wednesday, May 22, at 12 pm EST for a special webinar with Cindy Steinberg, U.S. Pain’s National Director of Policy and Advocacy, and the only patient and patient advocate on the task force that created the report.

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Golden, left, and Steinberg.

On May 9 and 10, the Pain Management Best Practices Inter-Agency Task Force–an advisory group convened by Congress and overseen by U.S. Department of Health and Human Services (HHS)–held its last public meeting to finalize a report on improving pain care in America. The task force, comprised of 29 members, includes Cindy Steinberg, U.S. Pain’s National Director of Policy and Advocacy, the only patient and patient advocacy representative.

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An incredible 6,000 groups and individuals stepped up to give feedback on the draft report from the Pain Management Best Practices Inter-Agency Task Force during the comment period that ended April 1. Among the groups was a coalition of pain-patient related organizations, including U.S. Pain Foundation, which submitted a united letter outlining their feedback.

On May 9 and 10, the task force will hold its last public meeting to vote on the final version of the report and discuss plans to disseminate it. The meeting will run from 10 am to 5:30 pm EST Thursday and from 9 am to 12 pm EST on Friday in Washington, D.C.

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Last month, the Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) reacted to the unintended harm to people living with chronic pain as a result of policy measures intended to ameliorate the opioid crisis.

On April 9, the FDA issued a Safety Announcement citing “serious harm,” including “withdrawal symptoms, uncontrolled pain, psychological distress and suicide” as a result of sudden discontinuation or rapid dose decreases in opioid pain medication. The FDA will now require changes to the prescribing information for health care professionals that will provide guidance on how to safely reduce or taper patients off opioid medications. The agency states that there is no standard opioid tapering schedule; rather, a schedule must be tailored to each patient’s unique situation considering a variety of factors, including the type of pain the patient has.

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Patient and provider groups are celebrating the introduction of the “Safe Step Act,” a federal bill aimed at lessening treatment delays and barriers to the access of prescription therapies. Filed by Representatives Raul Ruiz (D-CA) and Brad Wenstrup (R-OH), HR 2279 would reform the potentially harmful insurer practice known as step therapy, which allows insurers to force patients to try and fail on a series of insurer-preferred medications before offering coverage for the originally prescribed option. This is the second time a bill to limit step therapy has been introduced at the national level.

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The 90-day public comment period for the Pain Management Best Practices Inter-Agency Task Force’s (PMTF) draft report came to a close April 1, with more than 6,000 individuals and organizations submitting feedback.

Among those to comment was the Consumer Pain Advocacy Task Force (CPATF), a coalition of pain patient-related nonprofits, including U.S. Pain Foundation, which submitted a 25-page joint letter. In addition to U.S. Pain Foundation, the CPATF letter was signed by the Center for Practical Bioethics; CHAMP (Coalition For Headache And Migraine Patients); Chronic Pain Research Alliance; For Grace: Women In Pain; Global Healthy Living Foundation; Headache and Migraine Policy Forum; International Pain Foundation; Interstitial Cystitis Association; RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and The Pain Community.

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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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