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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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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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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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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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U.S. Pain’s Director of State Advocacy and Alliance Development Shaina Smith was among the speakers at the Biotechnology Innovation Organization’s (BIO) Patient and Health Advocacy Summit held Oct. 25 and 26 in Washington, D.C. The annual event brings together patient advocacy organizations, academia, regulators, biotechnology industry, and other stakeholders to discuss timely policy issues and share best practices. This year, attendees were treated to a surprise appearance from U.S. Secretary of Health and Human Services Alex Azar.

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The U.S. Department of Health and Human Services (HHS) Pain Management Best Practices Task Force convened its second public meeting on Sept. 25 and 26 in Washington, DC.

“The main purpose of the meeting was for the three task force subcommittees to present a high-level summary of their recommendations arrived at through working sessions held every week since the end of May,” says Cindy Steinberg, a task force member and U.S. Pain’s National Director of Policy and Advocacy. “Other goals were to hear input from high-level officials representing stakeholder government institutions, including HHS, Congress, the Centers for Medicare and Medicaid Services, the National Institutes of Health, the Department of Veterans Affairs, the Indian Health Service, and the Department of Defense. The task force also heard from the U.S. Surgeon General, patients living with chronic pain, and members of the public.”

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TUCSON, ARIZ., AND MIDDLETOWN, CONN. (August 3, 2018)–The Massage Therapy Foundation announced today that it has awarded a $5,000 Community Service Grant to the U.S. Pain Foundation, the leading chronic pain advocacy organization in the country. The grant will fund free massage therapy and self-massage training to people living with pain, in an effort to understand whether massage therapy can help reduce the use of pain medications. U.S. Pain Foundation’s proposal was one of four recipients selected by the Massage Therapy Foundation from a total of 46 applications nationwide.

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