Ban the QALY

What is a QALY? The Controversial Health Metric That Discriminates Against Patients

Quick Guide: QALY at a Glance

Overview: The Quality-Adjusted Life Year (QALY) is a metric used by insurers and health economists to assign a numerical value to a year of human life, adjusted for its "quality." This score is used in cost-effectiveness formulas to decide which treatments are "worth" paying for, effectively determining who gets access to care.

The Problem: The QALY is an inherently discriminatory and outdated metric that systematically devalues the lives of the elderly, the disabled, and anyone with a chronic condition. By assigning a lower "quality" score to a life lived with illness, the formula concludes that treatments for these populations are less valuable, creating a system of healthcare rationing that targets the most vulnerable.

Patient Impact: When QALYs are used to make healthcare decisions, patients are likely to face:

• Denial of Care: Insurers may deny or restrict access to life-saving or life-improving medications that are deemed "not cost-effective" under QALY calculations.
• Devaluation of Life: Patients are told, through policy and calculations, that their lives are considered less valuable than the lives of healthy individuals.
• Discrimination Based on Age or Disability: Older adults and people with disabilities are disproportionately harmed as the formula inherently penalizes shorter life expectancies and pre-existing conditions.
• Suppressed Innovation: The use of QALYs can discourage research and development into treatments for chronic, rare, or age-related diseases because they are less likely to meet arbitrary cost-effectiveness thresholds.
• Loss of Autonomy: Medical decisions are taken away from patients and their doctors and are instead made based on impersonal, speculative formulas that ignore a patient's lived experience and personal values.

Our Solution: We must move beyond these discriminatory formulas and adopt patient-centered approaches to value. This includes:

1. Banning QALYs: Passing legislation like the Protecting Healthcare for All Patients Act (H.R. 485) to prohibit the use of QALYs in all federal healthcare programs.
2. Adopting Fairer Alternatives: Championing and implementing alternative metrics like Equal Value of Life Years Gained (evLYG) and Real-World Evidence (RWE) that value all lives equally and focus on outcomes that matter to patients.

How You Can Help:

• Contact Your Lawmakers: Urge your elected officials to support the Protecting Health Care for All Patients Act and end QALY-based discrimination.
• Support Advocacy: Get involved with patient advocacy organizations like Patients Rising and the Alliance for Aging Research that are leading the fight against QALYs.
• Share Your Story: Help raise awareness by sharing information about the dangers of QALYs with your friends, family, and community.

Understanding QALYs in Healthcare

Imagine your daughter’s life-saving medication is being debated not by doctors who know her, but by distant economists using a spreadsheet. This isn’t a hypothetical scenario; it's the heart-wrenching reality for Jen Hepworth, who recounted her disbelief that an institute "was valuing my daughter’s life and deciding whether or not her life was worth paying this amount of money for the drug that has absolutely saved her life."

This feeling of being reduced to a calculation is an experience shared by countless patients and their families. Their lives, hopes, and futures are being weighed by a cold, controversial metric known as the Quality-Adjusted Life Year, or QALY. It’s an invented metric that values a healthy year at 1.0 and then devalues a person’s year to a fraction if they are diagnosed with a disease. It is a tool that attempts to put a price on a year of life, a practice that inevitably leads to discrimination.

QALY Metric: What It Means: Quality-Adjusted Life Year

A Quality-Adjusted Life Year (QALY) is a metric used in healthcare economics to measure the supposed value of medical treatments. It combines two distinct factors—the length of life and the quality of that life—into a single numerical score. A year of what is deemed "perfect health" is assigned a value of 1.0, while being deceased is valued at 0. Any health state that falls short of this perfect ideal is given a fractional value, representing a devalued quality of life.

How QALYs Are Used in Healthcare

Originally developed as a policy tool for large-scale health systems, QALYs are now commonly used in cost-effectiveness analyses (CEAs) to inform high-stakes decisions about healthcare resources. Government bodies, government health systems, and private insurance companies use QALYs to determine which treatments they consider "cost-effective." These determinations can directly influence which new medicines are approved for coverage and which patient populations get access to care, effectively creating a system of rationing based on a flawed definition of value.

Healthcare interest groups attempt to sell QALYs as the "gold standard" for economic efficiency. However, Paul C. Langley, PhD, Adjunct Professor at the College of Pharmacy, University of Minnesota, writes in the Journal of Innovations in Pharmacy that “there is no ‘gold standard’ QALY, let alone a ‘gold standard’ utility metric.” 

The QALY is an inherently discriminatory and dangerously outdated tool. It systematically devalues the lives of people with disabilities, chronic illnesses, and the elderly by creating a two-tier system of human worth. This leads directly to the rationing of essential care and prioritizes a flawed, unrealistic concept of "perfect health" over the real-world needs, resilience, and values of individual patients.

How QALYs Work: Breaking Down the Flawed Calculation

To understand why the QALY is so dangerous, we have to look at how the score is calculated. The math seems simple on the surface, but its foundations are ethically and methodologically unsound.

The Core Formula

The basic equation is: QALY = (Expected Years of Life Gained) × (Quality of Life Utility Score)

The formula’s discriminatory power is embedded in both parts of this equation. The "Expected Years of Life Gained" immediately disadvantages older adults, while the "Quality of Life Utility Score" penalizes anyone living with a chronic condition or disability. The problem is not just the math; it's the biased values that the math is built upon.

Decoding the Quality Score: A Flawed Foundation

A key criticism of QALYs lies in the source of these "quality" scores. Instead of asking patients who have the wisdom of lived experience, the scores are typically based on the preferences of the general public. In surveys, people with no experience of a particular condition are asked to imagine what it would be like and then "trade" years of their life to avoid it (a method called Time Trade-Off).

Unsurprisingly, healthy individuals tend to "overestimate the impact of health impairments," assigning significantly lower scores than patients who are actually living—and often thriving—with those same conditions. This methodological choice has profound consequences. For example, a UK social value set derived from the general public found conditions classified as “health states worse than dead.”

Lars Bernfort and a group of researchers with the Department of Medical and Health Sciences at Linköping University point out the flaws: “In the UK value set, QALY-weights are allowed to take on negative values meaning that it is possible to be in a state that is valued as worse than being dead. About one-third of the 243 possible states from the EQ-5D were given negative values.” 

When a person lives in a state deemed an SWD, any treatment that extends their life generates "negative QALYs," which is counted as a loss to overall population health. This can lead to the absurd and cruel recommendation to withhold life-extending treatments.

Patients Most Harmed by QALYs

The fundamental flaw of the QALY is that it does not value all lives equally. By design, it creates a hierarchy of human worth, where the young and healthy are valued more than the old and the sick.

Bias Against People with Disabilities

QALYs are built on the premise that life with a disability is inherently worse than life without a disability. Consequently, a treatment that extends or improves the life of a person with a disability will result in fewer QALYs gained and is, therefore, given less value. This leads to the undervaluation of treatments that improve the lives of these patients because they do not restore "perfect health".

The National Council on Disability, an independent federal agency, has explicitly stated that QALYs are built on a faulty premise: that life with a disability is inherently worse than life without a disability. 

“The QALY metric has long been opposed by disability advocates as a tool for determining the value of health care and how treatments will be covered by payers in both public and private insurance programs,” writes Kelly Israel, Policy Analyst, Autistic Self Advocacy Network and Sara van Geertruyden, Executive Director, Partnership to Improve Patient Care. 

A 2019 report by the National Council on Disability concluded that there was “sufficient evidence of QALYs being discriminatory (or potentially discriminatory) to warrant concern, including: (1) concerns raised by stakeholders in the interviews NCD undertook for this report (including bioethicists, patient rights groups, and disability rights advocates); (2) compelling arguments from prominent bioethicists condemning the use of QALYs; and (3) the inability of patients in countries where QALYs are used more heavily to obtain coverage of needed health care.”

Neil Romano, Chairman of National Council on Disability, explains, “The lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory.” 

Discrimination Against Patients Living with Chronic Conditions and Diseases 

The QALY devalues the lives of individuals who cannot achieve "perfect health." For them, the 1.0 score is an impossible benchmark. As expert Paul Schneider states, "extending the lives of individuals with underlying health conditions gains fewer QALYs than extending the lives of ‘more healthy’ individuals." 

This has a devastating human cost. As mother Khrystal Davis shared after a QALY-based assessment of a treatment for her son, "they actually determined that Hunter’s life is worth less than that of our other children." This isn't just an economic assessment; it's a judgment on a child's worth.

Case Study: Duchenne Muscular Dystrophy (DMD)

A July 2024 study on Duchenne muscular dystrophy perfectly illustrates this discrimination by using the QALY metric.

Duchenne muscular dystrophy or DMD causes progressive muscle weakness and loss of function. DMD typically appears in early childhood and worsens over time. As the disease progresses, patients are unable to walk or move independently. Eventually, it affects the heart and lungs.  Today, few Duchenne patients live past their 20s, but advances in research and new treatment options offer families new reasons to hope.

When researchers analyzed the difference in QALY assessments for equivalent therapies versus standard of care for 2 patient populations, they found that a life-extending treatment was deemed "not cost-effective at standard willingness-to-pay thresholds even if it were free."

In contrast, the same treatment was considered cost-effective for ambulatory patients in earlier stages.  The only difference was the patients' level of disability. This starkly reveals how the metric penalizes treatments for more severely disabled populations, despite offering equal clinical benefit and being desperately wanted by patients and their families.

Devaluing the Elderly

The discrimination extends to older adults. Because they naturally have a shorter life expectancy, any treatment they receive generates fewer "years of life gained," resulting in a lower QALY score. Therefore, the QALY calculation is "inherently discriminatory against treatments for older adults." A new drug for an 80-year-old is mathematically valued less than the same drug for a 30-year-old. 

This can create disincentives for developing treatments for age-related conditions like Alzheimer's or macular degeneration, as they are less likely to be deemed "cost-effective" under this biased system.

QALYs in Practice: Metric for Rationing Care

In the United States, one organization stands out as a chief proponent and user of the discriminatory QALY metric: the Institute for Clinical and Economic Review (ICER). Though it presents itself as an independent watchdog, ICER functions as a value-assessment body whose reports provide insurers, government programs, and pharmacy benefit managers (PBMs) with the academic cover they need to deny patients access to innovative treatments.

ICER’s influential reports, built on the back of the flawed QALY, translate directly into real-world barriers that stop patients from getting the medicines their doctors prescribe. This is especially true for the rare disease and disability communities, whose lives are systematically devalued by ICER's methodology.

Critics have pointed out that ICER’s process is deeply flawed. For drugs that are still "ways away from being FDA approved," ICER often "invents research" and uses "imperfect modeling" to pre-emptively label a new therapy as not cost-effective. This creates an immediate obstacle, poisoning the well and setting a low price point before a new medicine ever has a chance to reach the patients it was designed to help.

To justify its rationing recommendations, ICER has put forth a cruel and misleading argument, claiming that "the opportunity cost of supporting the use of ultra-orphan drugs necessitates that patients with a more common disease... are denied treatment."

Let’s be clear: this is a false choice. Pitting vulnerable patient populations against each other is a transparent attempt to defend a discriminatory system. The problem isn't that helping a patient with a rare disease harms a patient with a more common one. The problem is the use of a broken metric that devalues all of their lives. This argument isn't about ensuring fair access for the many; it's about justifying rationing for the most vulnerable.

Legislative Action: Pass Federal QALY Ban

There is a growing bipartisan movement to ban QALYs. Patients Rising is leading the way to pass a federal ban on the QALY. 

The Affordable Care Act already recognized the metric's discriminatory potential and banned its use in Medicare. Both Congress and the Department of Health and Human Services (HHS) have recognized this fact and enacted a statutory ban on using QALYs in Medicare and by the Patient-Centered Outcomes Research Institute (PCORI) to determine coverage, reimbursement, and incentive programs. Yet the Institute for Clinical and Economic Review (ICER), a privately funded, unauthorized, unregulated, non-governmental, private organization continues to market QALYs as a useful tool for Medicaid, commercial health plans and pharmacy benefit managers.

Members of Congress on both sides of the aisle have expressed opposition to using the QALY in public programs. Patient advocates have long pushed for the consideration of better metrics by payers that reflect the priorities of patients and people with disabilities, hoping to reduce hurdles to appropriate and timely care.

The Protecting Health Care for All Patients Act, authored by Representative Kat Cammack and sponsored by Patients Rising, “prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability, age, or terminal illness) to determine relevant thresholds for coverage, reimbursements, or incentive programs.”

More than 100 patient advocacy organizations support the bill, calling the QALY an "antiquated metric that does not meet today’s scientific standards" and is "inherently biased, unscientific, and lacking in evidence."

Prioritizing Patients Over Formulas in Healthcare

The debate over QALYs comes down to a simple, moral question: Do we value all lives equally? The consensus among patient advocates, disability rights groups, and a growing number of policymakers is that QALYs are a flawed, discriminatory metric that should be replaced by more equitable and scientifically sound approaches.

Decisions about medical treatment should be made by patients and their doctors, based on individual needs and values, not by a one-size-fits-all formula. By supporting patient-centered alternatives and advocating for legislation like the Protecting Health Care for All Patients Act, we can build a system that honors the dignity and worth of every single individual.

A patient is a person, not a number. It’s time our healthcare system treated them that way.