Patient Advocacy Groups Circulate Revised Open Letter Against the Use of QALYs
A group of patient advocacy organizations has published a revised version of their 2021 open letter opposing the use of Quality-Adjusted Life Years (QALYs) and similar measures that employ fundamentally devaluing metrics to evaluate the impacts of procedures and treatments on the lives of people living with disabilities and older Americans.
This group, which includes the Partnership to Improve Patient Care (PIPC), the American Association of People with Disabilities, the ALS Association, the Alliance for Aging Research, the Patient Rights Action Fund, and the Community Access National Network, chose to revise their original letter after the Biden Administration referenced QALY-based studies in their implementation of the Medicaid Price Negotiation Program passed as part of the Inflation Reduction Act (IRA), and the Trump Administration’s current Executive Order that would attempt to instituted “Most Favored Nation” drug pricing.
PlusInc evaluated the use of QALYs in the healthcare industry in February 2025 by examining claims put forth by both proponents and opponents of QALY metrics. While proponents argue that QALYs are a vital part of ensuring that medications and treatments are both medically effective and cost-effective, opponents argue that the fundamental basis of QALY-type metrics utilizes a level of “perfect health” that is not reflective of people who are living with disabilities.
From that article:
The primary issue is how we define “Perfect Health.” This requires developing a shared definition of “perfect health”—something that each country and set of researchers can define differently.
If we use the questions asked by the EuroQol’s EQ-5D-5L QOL system, a person is in perfect health if they report that, as of today, they:
have no problems walking about;
have no problems washing or dressing themselves;
have no problems doing their usual activities (even if their usual activities are constrained);
have no pain or discomfort, and;
are not anxious or depressed (Sawhney, Dobes, & O’Charoen, 2023).
Many of these metrics operate on the presumption that, if someone cannot walk, wash, or dress themselves without assistance, they are in “imperfect health.” This assumption is, on its face, biased against people living with disabilities and devalues their lives and experiences.
PIPC stated this about the open letter:
“The central theme of the letter is this: All lives are valuable, and our health care policy should adhere to this fundamental American belief. We strongly urge policymakers to reject policies that would devalue and ration care for any American, whether modeled after foreign or domestic value assessment methodologies.”
Organizations wishing to add their name to the list of signatories may do so using the following link:
https://docs.google.com/forms/d/19DjLPESytDg-VbawopsBZm3qZ99WxDf4J8Mh_Ytp0cU/edit
