U.S. Pain and 31 patient and professional groups have submitted a letter to Congress urging it not to repeal the Ensuring Patient Access and Effective Drug Enforcement Act of 2016, which would upend essential protections for some of the most vulnerable patients in the country. The law aims to prevent the Drug Enforcement Agency (DEA) from limiting controlled substance pain medication distribution in a that way lacked transparency, due process, or safety.[...]

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How does the healthcare system provide value to people with chronic conditions? It’s a question that has puzzled experts for years, prompting research, systematic reviews and assessments. Existing models tend to measure values held by healthcare professionals, rather than relevant outcomes for patients.

The Innovation and Value Initiative (IVI) is a new collaboration of healthcare stakeholders whose goal is to promote the development and use of high-value interventions that advance health from a patient perspective and to change the way value is measured and rewarded. U.S. Pain Foundation is assisting in the cause through information sharing, brainstorming concepts with IVI’s leadership, and providing the viewpoint and voice of those individuals living with chronic conditions.[...]

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The Interagency Pain Research Coordinating Committee (IPRCC), the nation’s highest pain policy advisory committee, held its biannual meeting Oct. 23 at the National Institutes of Health (NIH) campus in Bethesda, MD.  The IPRCC is the committee that oversaw the development of the National Pain Strategy, as well as the recently released Federal Pain Research Strategy. U.S. Pain Foundation’s National Director of Policy and Advocacy Cindy Steinberg, a member of the IPRCC, was in attendance.[...]

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Policymakers, health care providers, and members of the public continue to grapple with how to address the ongoing opioid crisis. Most recently, President Trump deemed the opioid epidemic a national health emergency, calling on the country to work together to solve it.

But many people with pain feel the discussion about reducing opioid abuse is often one-sided, overlooking that these medicationss can be a critical part of treatment that allows them to function.[...]

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Many in the chronic pain community expressed concern after CVS pharmacy announced this month that it will limit opioid prescriptions to seven days for acute or new conditions. The wording of the new policy is as follows: “This program will include limiting to seven days the supply of opioids dispensed for certain acute prescriptions for patients who are new to therapy,” which means people living with chronic pain should not be subjected to the seven-day limit. However, CVS will  limit the daily dosage of opioids and will require use of immediate-release formulations before prescribing extended-release opioids; these two changes may affect chronic pain patients.[...]

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U.S. Pain goes international

Golden, left, with Steinberg, at right

U.S. Pain Foundation’s National Director of Policy and Advocacy Cindy Steinberg and California ambassador Katie Golden traveled to Amsterdam for a two-day international patient advocacy forum. Organizations from around the European Union and United States  represented patients with chronic conditions such as multiple sclerosis, Huntington’s Disease, and migraine disease.

The purpose of the forum was to exchange ideas on what are the biggest challenges to patient groups today across countries and disease conditions and to brainstorm about hat can be done to tackle them.[...]

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Despite opposition from groups like the U.S. Pain Foundation, beginning in January 2018, the Center for Medicare and Medicaid Services (CMS) will change the pain management questions on patient hospital satisfaction surveys from how well staff did controlling patients’ pain to how often they “talked” to patients about their pain. The Hospital Consumer Assessment of Healthcare Providers and Systems, known as the HCAHPS survey, is a high-profile, publicly reported measure that allows consumers to compare the quality of care between different hospitals. Survey results are also used to determine a portion of hospital reimbursement rates.[...]

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As Texas and Louisiana continue efforts to keep residents safe, patient-centered organizations are concerned for pain patients and others who have had their treatments interrupted or are without medical equipment.To ensure patients affected by Hurricane Harvey  do not face unintended, negative health outcomes, U.S. Pain has put together an online engagement campaign that asks the U.S. Department of Health and Human Services (HHS) to activate its Emergency Prescription Assistance Program. This would allow eligible patients to receive their necessary prescriptions and medical equipment at no cost from participating pharmacies.[...]

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In a conference room overlooking Washington, D.C., nonprofit organizations and other stakeholders gathered around the table and gave U.S. Pain Foundation the opportunity to present ideas and cultivate conversations surrounding patient access issues.

Known as the Keeping Patients Stable on Their Medications Coalition, the group had met in the past to address step therapy and nonmedical switching, two common insurance barriers to medications. Now under the leadership of the U.S. Pain Foundation, the goal is to expand upon the coalition’s initial efforts.[...]

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During the early morning hours of July 28, the U.S. Senate narrowly rejected the most recent proposal to repeal and replace the Affordable Care Act (ACA), known as the “skinny repeal.”  McCain (R-Arizona), who was recently diagnosed with brain cancer, casted the deciding vote.

U.S. Pain was among many health and patient organizations that opposed the proposed reform, including: the American Medical Association; the American Public Health Association; American Hospital Association; AARP; the American Cancer Society Cancer Action Network; and the National Organization for Rare Disorders.[...]

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