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For Immediate Release
March 16, 2021
Today, patients and people with disabilities applauded that the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors approved principles guiding its work to consider the full range of outcomes data in its research
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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.
Poll of 2,001 registered voters finds most Americans want to decide the best course of treatment with their doctors and oppose government use of cost-effectiveness assessments Today, the Partnership to Improve Patient Care (PIPC) released a public opinion poll by Morning Consult regarding the use of cost-effectiveness assessments to determine value of coverage and treatment costs. The survey demonstrates that voters resoundingly reject the main tenets of cost-effectiveness analyses with 82 percent of American voters objecting to their use in determining health care coverage and reimbursement decisions. These types of measures, which are often used outside of the U.S. to limit patient access to medicines, have been frequently criticized as discriminatory by patients and persons with disabilities. Increasingly, policymakers and payers have proposed to use these same tools to limit coverage for Medicare and Medicaid beneficiaries.
The Partnership to Improve Patient Care (PIPC) and over 40 organizations representing patients, people with disabilities and providers submitted a letter to the Institute for Clinical and Economic Review (ICER) in response to their request for input on their value assessment process. In the letter, the organizations stated, “Simply put, if we aren’t paying for care that patients’ value, we aren’t really paying for value-based care.”
Poll of 2,000 registered voters finds most Americans want to decide the best course of treatment with their doctors and oppose government intervention in medical care as proposed by CMS
CMS’ Proposed Use of Comparative and Cost-Effectiveness Standards: What It Means for Patients4/8/2016
On March 8, 2016, the Center for Medicare and Medicaid Services (CMS) proposed a new Part B Drug Payment Model. Among its provisions, the proposal calls for use of comparative effectiveness research (CER) and cost-effectiveness reports as the basis for national Medicare policy, in direct conflict with the patient-centeredness movement. Since its inception, the Partnership to Improve Patient Care (PIPC) has been strongly opposed to misuse of CER and cost effectiveness in government policies. This proposal appears to have been rushed forward with little or no patient input. The phase involving centralized use of CER and cost-effectiveness begins early in 2017, eventually covering 50% of providers and patients, leaving little time for meaningful patient engagement.
On March 8, 2016, the Center for Medicare and Medicaid Services (CMS) proposed a new Part B Drug Payment Model calling for centralized use of comparative effectiveness and cost-effectiveness reports as the basis for national Medicare policy. The Partnership to Improve Patient Care (PIPC) is strongly opposed to the approach outlined by CMS and asks asks all stakeholders to alert Congress to the serious concerns brought on by CMS' proposed Part B Drug Payment Model.
The Partnership to Improve Patient Care (PIPC), along with nine leading patient and cancer care advocates, released a landmark set of recommendations reflecting the consensus of patient communities on how to outcomes that matter to oncology patients. The summary —based on a recent roundtable discussion convened by PIPC— outlines priorities for public policy in cancer care as the healthcare system shifts away from a fee-for-service (FFS) model to alternative payment models (APMs) that reward providers for their ability to achieve “value.”
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