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

Community Advocates Discuss Healthcare Boogeyman: Prior Authorization

On February 27th, PlusInc, in collaboration with the Appalachian Learning Initiative (APPLI) assembled a diverse group of public policy stakeholders for a virtual policy forum to discuss Prior Authorization (P.A.) and its access considerations impact on patient access and patient care. P.A. requirements are widely recognized as the Payor’s Boogeyman because they create overly burdensome, layered processes for patients to obtain approval for provider-prescribed care. These processes often result in lengthy delays that increase the likelihood that patients will abandon their care or treatment plans rather than fight the system. Numerous associations representing varied interests within the healthcare sector have correctly labeled P.A.s as fueling health disparities with disproportionate impacts on poor and minority populations. The virtual policy forum pulled back the curtain on P.A., offering facts, figures, and maybe most importantly, personal stories.

Amy Niles, Chief Mission Officer at the PAN Foundation (Patient Access Network), moderated the virtual policy forum. She was joined by| Tyler Scheid, JD, Lead Policy Analyst at the American Medical Association (AMA), Ryan Clary, nonprofit policy consultant with Clary Strategies, and Amanda Boone, Co-Founder, Cystic Fibrosis United. The team discussed various aspects of prior authorizations and its impact on the healthcare echosystem. Niles highlighted the PAN Foundation's work on cost containment strategies and prior authorization’s negative impacts on patients and healthcare providers, alike. She also mentioned the introduction of the "Doctor Knows Best Act of 2025" and the "Improving Seniors Timely Access to Care Act," which are aimed at streamlining the P.A. process. Niles also noted the work done by the PAN Foundation on this important issue, including its recent report, Patient Experience with Prior Authorization.

Scheid presented findings from the AMA’s 2024 AMA Prior Authorization Physician Survey, which included the following:

• 89% of physicians reported that P.A. requirements somewhat or significantly increase physician burnout

• 40% of physicians have staff whose sole job is to work on P.A. submissions

• Physicians spend ~13 hours/week working on P.A.s

• Nearly one out of three physicians (31%) reported that P.A. requests are always denied, and just one out of every five (20%) indicated that they ALWAYS appeal denials. Over half of physicians (55%) who responded that they do not always appeal them stated that they don’t have sufficient staff resources or time to appeal denials.

Source: American Medical Association | 2024 AMA prior authorization physician survey

Clary, an advocate with 30 years of experience in HIV and viral hepatitis advocacy, shared his perspective on the barriers patients face due to P.A. He highlighted the severe impact of P.A. on people's care and public health efforts, using the example of hepatitis C treatment. Ryan emphasized the importance of addressing these issues collectively, involving the healthcare industry, pharmaceutical industry, government, and most importantly, the people most impacted. He also mentioned the work of organizations like the National Viral Hepatitis Roundtable (NVHR) and Treatment Action Group (TAG) in addressing these issues.

Boone’s personal story and the challenges she faced as a patient living with cystic fibroris encapsulate the entire problem with prior authorization and its adverse impact on patient health…and safety. She shared her first-hand experience when P.A. stopped her from receiving the treatment she needed, which was prior to the U.S. Food and Drug Administration (FDA) approving Trikafta. The treatment is approved for approximately 90% of patients with cystic fibrosis, many of whom had no approved therapeutic options, according to the FDA. Boone noted the new therapy has been a ‘game-changer’ for people living with cystic fibrosis, though even still P.A.-related challenges remain with accessing it.

The conversation ended with a discussion on the negative impact of P.A. on physicians, patients, and employers and the potential for AI to exacerbate existing issues. Additionally, PlusInc noted that they’d be launching an online patient perspectives survey in the coming weeks.

To view the February 27th virtual policy forum, click here.