QALY safeguards are bipartisan:
This bill builds upon important safeguards in the Patient Protection and Affordable Care Act and the Inflation Reduction Act that protect against misuse of QALY standards in Medicare.
QALY prohibitions are broadly supported:
The bill also advances recommendations from a broad range of stakeholders. The National Council on Disability, an independent federal agency advising Congress and the administration on disability policy, recommended as part of its Health Equity Framework that the bar be extended to all federal programs. Additionally, in its independent assessment, the Disability Rights Education and Defense Fund (DREDF) concluded that use of QALYs violates national disability nondiscrimination laws. It also builds upon repeated calls from the patient and disability community to end the practice of reliance on discriminatory tools in a manner that could lead to reduced access to treatments that are important and necessary for people with disabilities and chronic conditions, as well as older adults.
Bill would prevent efforts to use QALY metrics in federal health programs:
In recent years, policymakers have pursued flawed policies that rely on QALY-based decisions – both directly and indirectly – at the federal and state level. This bill would protect against these or similar efforts, giving patients and people with disabilities greater assurance that policy will reflect their needs, instead of relying on discriminatory, one-size-fits-all standards that ignore individual differences.
Bill opens the door to giving a voice to patients and people with disabilities:
By prohibiting use of flawed standards that discriminate and ignore differences in patient needs, the bill sets the stage for ongoing work towards policies that include patient perspectives and consider individual needs and perspectives.
Background: What are Quality Adjusted Life Years?
QALYs are metrics commonly used to determine the value of a health care treatment. To calculate a QALY, researchers assign a value to a person’s life. Because the value assigned to seniors, the chronically ill, or people with disabilities is lower than that of a young, healthy person, QALYs could lead policymakers and payers to conclude that treatments for seniors, patients with chronic conditions or people with disabilities are not worth covering.
Currently, QALY-based cost effectiveness analyses are commonly referenced in the development of Preferred Drug Lists and benefit designs for services covered under Medicaid, allowing states to restrict coverage based on flawed determinations of clinical and cost effectiveness that inherently devalue people with disabilities or chronic conditions.
Additionally, the Veterans Health Administration has a partnership with the Institute for Clinical and Economic Review, an entity that calls QALYs the “gold standard,” to use its studies in the development of formularies. ICER Analytics, a program advancing coverage and benefit design recommendations based on QALYs, are made available to any payers seeking to use the information to justify restrictive formularies and benefit designs that make accessing innovative treatments difficult for patients and people with disabilities.
Over the years, concerns about QALYs have been expressed by many Members of Congress on both sides of the aisle. Therefore, it is our hope that this legislation will be advanced with strong recognition of the nation’s shared goal to end disability discrimination in federal health care programs.
We urge all Members of Congress to support this legislation as an important step forward to unambiguously bar QALYs and protect all people from health care discrimination.