From National Council on Disability: For Complete Post, Click Here…
As Chairman of the National Council on Disability (NCD), I write to express concerns about the Congressional Budget Office’s (CBO) reliance on the quality-adjusted life year (QALY) to estimate the budgetary effects of H.R.3, the Elijah E. Cummings Lower Drug Costs Now Act.
We are troubled that although CBO recognized that concerns have been raised about the discriminatory design and impact of the QALY, it described the discrimination as “potential,” and opted to utilize it because it was “the best available to CBO and is consistent with the approach taken by many countries to negotiate drug prices.” This makes light of the fact that the QALY assigns a lower value to the lives of people with disabilities and chronic illnesses. It also ignores the fact that countries that rely on the QALY to set drug prices have restricted or denied patients with disabilities access to effective drugs used to treat chronic conditions and to breakthrough medications.
In 2019, NCD published, “Quality-Adjusted Life Years and the Devaluation of Life with a Disability,” describing the QALY methodology and its ethical and legal implications. NCD found sufficient evidence of the discriminatory effects of QALYs to warrant concern and recommend its prohibition. Our recommendation to prohibit the use of QALYs is based on issues raised by bioethicists, patient rights groups, and disability rights advocates; compelling arguments from prominent bioethicists condemning the use of QALYs; and the inability of patients in countries where QALYs are used to obtain coverage of medications for chronic illnesses.
In fact, the restricted access occurring in countries utilizing QALY-based cost effectiveness research raised concerns that its use in the U.S. would result in rationing care to seniors and people with disabilities, leading Congress to prohibit its use under the Affordable Care Act of 2010 (ACA). The ACA prohibits the Patient-Centered Outcomes Research Institute (PCORI) from using the QALY or similar measure “that discounts the value of a life because of an individual’s disability as a threshold to establish what type of health care is cost effective or recommended.” It also prohibits the Secretary of Health and Human Services from using the QALY, or similar measures, to determine coverage, reimbursement, or incentive programs under the Medicare program.