| FOR IMMEDIATE RELEASE June 11, 2019 | Contact: Shea McCarthy Phone: (202) 688-0227 |
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.
Patient groups have been increasingly concerned by the lack of scientific rigor or patient-centricity in ICER’s reviews and by how seriously payers and policymakers are about using them to make healthcare decisions, which may limit access. With this in mind, many of these groups have joined together in the Value Our Health campaign and a set of shared principles designed to keep patients at the forefront of their own health care decisions.
“As a diverse group representing patients and people with disabilities, we believe everyone’s health is valuable. While we share a common interest in addressing affordability within our health care system, we are increasingly concerned with the discriminatory tactics being considered to restrict access to treatments. It’s clear to us that ICER’s draconian methodology limits access to health care for patients, and we encourage a thoughtful review of our recommendations for updating the framework,” stated Tony Coelho, Chairman of Partnership to Improve Patient Care.
ICER is a private research organization that conducts cost-effectiveness assessments of medicines and health care services. Health insurers and policy-makers use these assessments to guide decisions that impact patient access, which is concerning to the patient and disability community, as their research relies on metrics that treat patients as averages and devalue the lives of people with disabilities and chronic illnesses.
In 2010, Congress authorized the Patient-Centered Outcomes Research Institute (PCORI) through the Patient Protection and Affordable Care Act. This created a blueprint for engaging patients and people with disabilities throughout the research process so that it reflected real-world considerations for decision-making. Similarly, the Food and Drug Administration (FDA) has made significant progress with patient-focused drug development to identify outcomes that matter to patients and drive innovation to address them. With this in mind, the letter made five recommendations to update ICER’s Value Assessment Framework:
To read the full comment letter, click here.
Partnership to Improve Patient Care
Since its founding, the Partnership to Improve Patient Care (PIPC) has been at the forefront of applying principles of patient-centeredness to the nation’s health care system — from the generation of comparative clinical effectiveness research at the Patient-Centered Outcomes Research Institute (PCORI), to the translation of evidence into patient care in a manner that achieves value to the patient. Having driven the concepts of patient-centeredness and patient engagement in the conduct of research, PIPC looks forward to bringing the voices of patients and people with disabilities to the discussion of how to advance patient-centered principles throughout an evolving health care system.
About Value Our Health
Value Our Health is a diverse group of organizations with shared principles representing patients and people with disabilities. They support assessing the value of any treatment using tools that are consistent with the goals of personalized, patient-centered medicine and do not discriminate against people with disabilities, chronic conditions, and diseases. To learn more about Value Our Health, read their principles for value assessments or visit their website.
“As a diverse group representing patients and people with disabilities, we believe everyone’s health is valuable. While we share a common interest in addressing affordability within our health care system, we are increasingly concerned with the discriminatory tactics being considered to restrict access to treatments. It’s clear to us that ICER’s draconian methodology limits access to health care for patients, and we encourage a thoughtful review of our recommendations for updating the framework,” stated Tony Coelho, Chairman of Partnership to Improve Patient Care.
ICER is a private research organization that conducts cost-effectiveness assessments of medicines and health care services. Health insurers and policy-makers use these assessments to guide decisions that impact patient access, which is concerning to the patient and disability community, as their research relies on metrics that treat patients as averages and devalue the lives of people with disabilities and chronic illnesses.
In 2010, Congress authorized the Patient-Centered Outcomes Research Institute (PCORI) through the Patient Protection and Affordable Care Act. This created a blueprint for engaging patients and people with disabilities throughout the research process so that it reflected real-world considerations for decision-making. Similarly, the Food and Drug Administration (FDA) has made significant progress with patient-focused drug development to identify outcomes that matter to patients and drive innovation to address them. With this in mind, the letter made five recommendations to update ICER’s Value Assessment Framework:
- give patients an equal voice,
- abandon the use of QALY or other discriminatory metrics,
- implement more stringent standards for review,
- increase transparency for patients and researchers, and
- prioritize outcomes that matter to patients and people with disabilities.
To read the full comment letter, click here.
Partnership to Improve Patient Care
Since its founding, the Partnership to Improve Patient Care (PIPC) has been at the forefront of applying principles of patient-centeredness to the nation’s health care system — from the generation of comparative clinical effectiveness research at the Patient-Centered Outcomes Research Institute (PCORI), to the translation of evidence into patient care in a manner that achieves value to the patient. Having driven the concepts of patient-centeredness and patient engagement in the conduct of research, PIPC looks forward to bringing the voices of patients and people with disabilities to the discussion of how to advance patient-centered principles throughout an evolving health care system.
About Value Our Health
Value Our Health is a diverse group of organizations with shared principles representing patients and people with disabilities. They support assessing the value of any treatment using tools that are consistent with the goals of personalized, patient-centered medicine and do not discriminate against people with disabilities, chronic conditions, and diseases. To learn more about Value Our Health, read their principles for value assessments or visit their website.
