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For Immediate Release
March 23, 2023 PIPC Chairman Tony Coelho issued the following statement on H.R. 485, the Protecting Health Care for All Patients Act.
The Protecting Health Care for All Patients Act represents an important step forward to strengthen and extend existing protections against use of the quality-adjusted life year (QALY) and similar metrics to all federal programs. The bill advances recent recommendations of the National Council on Disability and reflects longstanding, bipartisan concern with use of QALY standards in health care policy.
FOR IMMEDIATE RELEASE: November 17, 2021
On November 16, 2021, the Institute for Clinical and Economic Review (ICER) published its final evidence report for mavacamten, a new treatment for Hypertrophic Cardiomyopathy (HCM), a disease of the heart muscle affecting over 1 in 500 people.  In a report from the U.S. Department of Health and Human Services (HHS) to the White House laying out a “Comprehensive Plan for Addressing High Drug Prices,” HHS acknowledged the equity implications of certain methodologies, such as quality-adjusted-life-years (QALYs), for people of all ages with disabilities and chronic conditions and stated that drug pricing reforms should avoid utilization of methodologies that adversely impact access to needed medications for vulnerable populations.
 American Association of People with Disabilities This press release was first issued by the American Association of People with Disabilities (AAPD) on April 14, 2021.
Washington, D.C. – We are pleased to join the more than 90 organizations that signed a letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities.  PIPC is proud to have joined over 90 organizations in an open letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities
PIPC Statement on Behalf of People with Disabilities and Serious Chronic Conditions on MFN11/20/2020
Today, the Administration released an Interim Final Rule that would allow for the government to reference prescription drug prices established internationally, regardless of the metrics used by those countries or implications for access to care in those countries, for drugs covered under Part B of Medicare. The Partnership to Improve Patient Care and several other organizations expressed strong opposition to this concept when it was originally proposed in 2018.
As Chairman of the Partnership to Improve Patient Care (PIPC), I want to express my sincere congratulations to President-elect Joe Biden. Patients and people with disabilities are eager and excited to work with the President-elect and his team on policies that will improve their health and quality of life.
Today, the Administration released the text of an Executive Order allowing the Department of Health and Human Services (HHS) to rely on foreign governments to set prices for drugs covered under Medicare, regardless of the metrics used by those countries or implications for access to care for patients. The Partnership to Improve Patient Care (PIPC), along with other prominent patient and disability advocacy groups, has consistently expressed strong opposition to this concept, as it will have the impact of limiting and delaying access to needed treatments for Americans.
Today, the Administration released its anticipated Executive Order related to Medicare. Among its provisions, it would allow for the government to reference prescription drug prices established internationally, regardless of the metrics used by those countries or implications for access to care in those countries, for drugs covered under Medicare Part B. The Partnership to Improve Patient Care and several other organizations expressed strong opposition to this concept when it was originally proposed in 2018.
On February 5, 2020, the Massachusetts Health Policy Commission (HPC) finalized regulations outlining their approach to assessing the value of prescription drugs. As groups representing patients and people with disabilities, the affordability of health care is a significant priority. That being said, HPC’s regulations put patient access at risk, and may ultimately do more harm than good for patients. They set the stage for third-party analyses by groups like the Institute for Clinical and Economic Review (ICER) and rely on international reference pricing, which relies on QALY-based assessments in determining the “value” of treatments.
 Washington, January 16, 2020 – The Friends of PCORI Reauthorization coalition congratulates Nakela Cook, M.D., M.P.H., F.A.C.C., for her new role as incoming Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), a position she will assume on April 15, 2020. Dr. Cook comes to PCORI from the National Institutes of Health’s National Heart, Lung, and Blood Institute (NHLBI), where she served as Senior Scientific Officer and Chief of Staff.
 The Friends of PCORI Reauthorization coalition applauds the action taken today to extend funding for the Patient-Centered Outcomes Research Institute (PCORI) for an additional ten years. PCORI is an independent organization authorized by the “Patient Protection and Affordable Care Act of 2010” to study how different medications and treatments compare, so patients and their caregivers have the information they need to choose the health care and treatment options that are best for them. The passage of H.R. 1865 shows Congress’ commitment to ensure continued support for critical research helping patients and providers make evidence-based health care decisions that work best for them.
 Washington, D.C. – Today, the Partnership to Improve Patient Care and 37 leading patient and disability organizations submitted a comment letter to the Institute for Clinical and Economic Review (ICER) on their 2020 Value Assessment Framework. Given the serious concerns that stakeholders have raised with ICER’s flawed methodology, the letter urges ICER to put patients and people with disabilities at the center of all assessments to ensure they: (1) are transparent, (2) align with innovative leaders in the field, and (3) do not rely on the use of quality-adjusted life years (QALYs) and other discriminatory metrics that treat patients as averages.
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