On March 8, 2023, during the first markup of health care bills this year, the Health Subcommittee of the House Energy and Commerce Committee deliberated on proposed legislation aimed at abolishing the federal use of QALYs.
What do QALYs represent? QALYs, short for Quality Adjusted Life Years, is a formula that aims to quantify the value of a treatment by taking into account the duration of a person’s life and the quality of life they experience during that time.
“QALY is very discriminatory. If you’re disabled, you’re downgraded,” said Daniel Durham, Senior Health Policy Advisor, of the Biotechnology Innovation Organization (BIO). “The National Council on Disability has said that QALY is discriminatory.” QALYs have the potential to overlook the benefits of treatments that enhance the lives of individuals with cancer, rare diseases, and other conditions.
This discrimination is inherent in that QALYs arbitrarily assign a lower value to a year of life with a disability. “Quality of life is difficult to define,” says the National Council on Disability. “QALYs devalue the lives of older adults, people with disabilities and chronic conditions, and communities of color,” adds the Alliance for Aging Research.
According to a 2020 United States Presidential Questionnaire on Disability Policies, the American Association of People with Disabilities (AAPD) said that more than 35 million individuals, equivalent to 23% of the American electorate, were people with disabilities. “As members of this group, we strive for self-reliance and seek to leverage our abilities and vigor to support the future prosperity of our great nation,” states the opening paragraph. “Across the country, over 60 million Americans with disabilities make significant and noteworthy contributions to our communities.”
During his 2020 presidential campaign, then-candidate Joe Biden said, “I will ensure people with disabilities are not denied coverage based on the use of the quality-adjusted life year (QALY) and related enterprises in making coverage and payment determinations in public programs.” He continued, “In 2010, the ACA created a statutory ban on their use to determine what Medicare could cover, an acknowledgment that their use could lead to Medicare restricting coverage of treatments and services that were most needed by people with chronic conditions and diseases and disabilities.”
A bill to amend title XI of the Social Security Act, H.R. 485, seeks to ban the usage of QALYs in any federal health program, a measure that some agencies have already implemented. This legislation holds a special significance for one of its co-sponsors, Subcommittee Chair Cathy Rodgers (R-WA), who states that QALYs disregard the most vulnerable population, including “people with cystic fibrosis, ALS, and people like my son, who has Down Syndrome.”