Quality-Adjusted Life Years (QALYs): The Bad, The Worse, and the Discriminatory

Health care costs are dramatically rising in the United States. Health care spending increased from $74.1 billion in 1970 (around $452 billion today) to $4.87 trillion in 2023.^[1] Health care now accounts for 18% of U.S. GDP compared to 5% in 1960.^[2] It is therefore  necessary for payers (such as health insurance companies and federal agencies) to try to save money. However, payers frequently rely on discriminatory tools that harm patients. One such tool is the QALY.

QALYs are used by payers to make decisions about which drugs and treatments to cover. They notoriously devalue both people with disabilities and the treatments we need to maintain good health. Nonetheless, health economists increasingly debate whether QALYs should be used to make decisions about life and death. For example, in 2020 Shaw and Morton argued that increasing QALYs was an argument (although not by itself) for legalizing assisted suicide and euthanasia.^[3] Five years later, although not arguing in favor of either, Yael Assor argued that QALY-based healthcare decision-making tended to overlook states “worse than being dead,” and examined how and why doing so might “misdirect limited resources” and prolonged suffering.^[4]

Our concerns are not merely philosophical. In fact, QALYs are at our doorstep. The United States recently began to consider using a “most favored nation” (MFN) policy. According to a May 12, 2025 Executive Order (and in the Center for Medicare and Medicaid Innovation’s proposed GLOBE and GUARD models), the administration will base prescription drug prices on those paid in other countries.^[5] MFN benchmark countries use the QALY to make coverage, utilization, and reimbursement decisions.^[6] These countries routinely delay or deny access to treatments and medications available in the United States, and CMS has expressed that adopting MFN pricing would reduce drug utilization.^[7] MFN pricing therefore would likely bring the QALY’s cruel calculus into U.S. healthcare allocation.

Not Dead Yet and most other disability rights organizations strongly oppose QALYs. They are another symptom of a discriminatory health care system that prioritizes saving money over saving lives. However, understanding what QALYs are, how and why they affect health care, and their connection to assisted suicide and euthanasia can be difficult. Not Dead Yet has created this report to explain QALYs and their impact.

QALYs are a health care economic metric. Health care economics looks at the costs and benefits of health care, especially for the agencies and companies that pay for it.^[1] Payers often try to cut costs by prioritizing cost-effective treatments.^[2] A cost-effective treatment for a payer is one where the treatment’s cost does not outweigh the health improvements it provides.^[3] The QALY supposedly measures each treatment’s entire health benefit as a single number (representing both the quality and quantity of life), making it easier to use in cost-effectiveness studies that compare unrelated treatments.^[4] Payers want to compare unrelated treatments to make it easier to decide how to allocate spending overall.^[5] The QALY, however, is discriminatory.

The QALY (supposedly) lowers the value of a year of life (or a certain number of years) by the degree to which an illness or disability harms an individual’s quality of life.^[6] It does this by using a multiplier called a health utility.^[7] Health utilities are between 0 and 1.^[8] To use a fake example, if perfect health is 1, life with therefore inability to walk could be 0.65. In five years, a person in perfect health would gain 5 QALYs and a person with the inability to walk would gain 3.25 QALYs. QALYs are usually measured before and after treatment to determine how well the treatment worked.^[9] For example, if the person who gained 3.25 QALYs in five years gained 4.25 QALYs after treatment, paying for the treatment would result in a high gain of 1 QALY. The QALYs gained are then entered into a mathematical formula to get the incremental cost effectiveness ratio, or “cost-per-QALY.”^[10]

QALYs are discriminatory because of:

• how they are calculated
• how payers use them.

Discriminatory Calculus

QALY calculations are discriminatory at their very root. By definition the QALY lowers the value of life based on disability. However, the most common ways to calculate how much to lower the value by (the health utility) also rely on discriminatory assumptions! Health utilities are typically calculated by surveying members of the general population, who often have negative views of disability based on stereotypes rather than experience.^[1]

These individuals are usually rating a series of numbers that represent impairments, with no context for what a life lived in that condition is like.^[2] For example, an older but commonly used survey, the EQ-5D-3L, had three levels of mobility impairment. The worst level was “I am confined to bed.”^[3] There is no sense from the prompt alone that the hypothetical person could use a wheelchair even though many if not most people with significant mobility-related disabilities use wheelchairs and scooters to get around. This grossly misrepresents the actual lives of people with disabilities.

Moreover, participants usually “rate” the numbers by playing Time Trade-Off and Standard Gamble games.^[4] Both types of games ask participants absurd hypothetical questions, such as whether they’d undergo a procedure that had a 50 percent chance of returning them to perfect health and a 50 percent chance of killing them.^[5] It is obvious that the results of such a gamble have nothing to do with real world quality of life.  Nonetheless multiple countries use these results to help them decide whether or not to pay for medical treatments.

It is also well-known that QALYs undervalue treatments that do not bring their treated population back up to perfect health.^[6] Why can be demonstrated mathematically.

Example
–

Let us say there are two drugs, one for Population A and one for Population B. Population A has a chronic illness. That illness, before treatment, gives them a utility value of 0.5. Thus, in 10 years of life, they would only gain 5 QALYs. Population B has a severe but curable illness. That illness, before treatment, also gives them a utility value of only 0.5. In their current state, in 10 years of life, they would also only gain 5 QALYs.

A treatment is developed for Population A that brings their utility value up to 0.75, but still not to 1 because their chronic illness cannot be cured. 10 x 0.75 = 7.5, compared to 5. Population A would thus gain 2.5 QALYs from treatment. This is a respectable number of QALYs!

However, Population B’s illness is entirely curable. If a treatment is developed for it, 10 x 1 = 10. Population B has thus gained 5 QALYs from treatment instead.

Let us assume both treatments have an identical cost. Thus, in a situation where the payer has scarce funding, the payer will favor treatments for Population B over treatments for Population A because Population A gains more QALYs per cost.

–

For people with chronic illnesses or disabilities, whose disability may continue to exist even after treatment, this means that treatments to extend our very lives will be undervalued and harder to obtain.^[7]

Discriminatory Usage

If the QALY (and the DALY, a similar metric) existed in a vacuum, it would be nothing more than a discriminatory number – a poor attempt by economists to measure quality and quantity of life at the same time. QALYs however are primarily used by payers to compare the effectiveness of dissimilar treatments.^[8] A payer could use the QALY, for example, to compare the effectiveness of a new drug for lung cancer to a new drug for breast cancer. The QALYs gained from both could then be entered into a mathematical formula to get their “cost per QALY.” If one drug turns out to be “cost-effective” under this metric and one does not, the payer might decide to fund only the “cost-effective” drug. Thus, at a broad enough scale of usage, payers are effectively using QALYs to decide how many treatment options are available to people with very different disabilities.

As explained, payers do not have to be deciding between populations for this to happen. All they have to do is do the math for the treatments themselves. Even if a population has some treatments available to them, it does not make use of the QALY to evaluate which treatments are available or to justify increased cost-sharing and utilization management less discriminatory.

As noted, countries that routinely use the QALY to determine coverage in their health systems cover fewer drugs and treatments, thereby offering patients worse-quality care.^[9] For example, the breast cancer drug Enhertu, rejected by the NHS due to its low “cost-effectiveness,” can extend patients’ progression-free survival by nearly five months, and survival by up to a year.^[10] It is hardly alone. The Office of Health Economics wrote that over 40 percent of the drugs approved in the United States are never approved in otherwise high-income European countries.^[11] Patients in these countries also can face longer wait times for medications even after they are already approved, or strict approval requirements, often worsening their health.^[12] The NHS infamously denied coverage of an Alzheimer’s drug to patients until their condition worsened solely on the basis of cost-effectiveness, literally denying patients’ families precious time with their loved ones.^[13] In short, patients in the United States simply cannot afford the moral cost of a discriminatory pricing system based on QALYs.

Health economists, bioethicists, and scientists have debated the QALY’s application to the end of life context for many years. Their opinions are diverse. In 2015, Stephen Barrie expressed concerns about the QALY’s ability to capture the differences in the value patients ascribe to “death,” “life,” and states worse than death.^[1] Barrie argued that a preference for “death” over a state worth negative QALYs – implied to be “worse than death” – did not accurately represent a preference for or a justification for assisted suicide or euthanasia.^[2] Five years later, in 2020, Shaw and Morton by contrast made an argument in favor of the QALY being relevant to assisted suicide and euthanasia.^[3] Professor Tim Stainton argued in 2022 that use of the QALY was “concerning” in this context.^[4] Stainton said that assisted suicide and euthanasia “have created significant risk to disabled persons in a world which largely sees their lives as less valuable, as ones of inevitable suffering and as not worth living.”^[5] The research literature therefore does not straightfowardly support use of the QALY to justify assisted suicide and euthanasia.

In fact, policymakers can be reluctant to use the QALY in this context. In 2025, the U.K.’s Department of Health and Social Care, while performing an Impact Assessment of a bill to legalize assisted suicide and euthanasia, said that “QALYs are not designed to quantify the health impacts of choosing to end life” while arguing that passing the bill would save the government money.^[6] Similarly, part of Yael Assor’s 2023 argument is indeed that policymakers are reluctant to examine the QALY’s application to “states worse than being dead” due to a diverse array of ethical, financial, and epistemic considerations.^[7]

That does not, however, mean the QALY is unrelated end-of life, assisted suicide, and euthanasia. To be clear: QALYs are not used to determine whether assisted suicide or euthanasia will be used in any country or state where either is legal. The decision is theoretically up to each individual patient. The issue is instead the basis of patients’ decisions to use physician-assisted suicide or euthanasia.

According to the National Council on Disability’s 2019 report, The Danger of Assisted Suicide Laws, the majority of those who used assisted suicide or desired to in the United States did so because they feared loss of autonomy, felt less able to engage in activities they enjoyed, felt they had lost dignity, or felt like a burden on others.^[8] These are problems that could be solved via the provision of appropriate, well-funded long term services and supports and medical care. Nonetheless, in states where assisted suicide is legal, patients have been denied coverage of medical care but offered coverage of assisted suicide!^[9]

Policymakers and payers want to or do use the QALY to make large-scale medical coverage decisions. It is therefore easy to see that widespread adoption of QALY-based pricing would, in some cases, hasten or unintentionally encourage use of assisted suicide and euthanasia. Patients who have been denied access to pain care or long-term care due to QALY-based cost-effectiveness valuation of that care may end up with few other options available to them.

Introduction Footnotes 

^[1] Cynthia Cox, Jared Ortaliza, Emma Wager & Krutika Amin,Health Care Costs and Affordability, kff.org (Oct.8, 2025), https://www.kff.org/health-costs/health-policy-101-health-care-costs-and-affordability/?entry=table-of-contents-introduction

^[2] Id.

^[3] D. Shaw & A. Morton, Counting the cost of denying assisted dying, Clinical Ethics, Jun. 2020, at 65-70, available at https://scispace.com/pdf/counting-the-cost-of-denying-assisted-dying-hxk70nhdko.pdf.

^[4] Yael Assor, Why are states worse than being dead overlooked in healthcare policymaking? An ethnographic examination, 8 Qualitative Research in Health 100635,100636-37 (2025) (“…certain medical interventions may prolong life while … maintaining patients in states they consider worse than death, policymakers risk misdirecting limited resources towards interventions … increase suffering rather than alleviate it”). While Assor does not promote assisted suicide or euthanasia with this point, the point can nonetheless be discriminatory because patients early in their diagnosis may consider their disability to be worse than death, having had little time to adjust. Or states worse than death may be considered so without patients’ preferences being measured at all.

^[5] Delivering Most-Favored-Nation Prescription Drug Pricing to American Patients, Exec. Order. No. 14297 3 C.F.R. 20749 (2025); Ctrs. Medicare & Medicaid Servs., GUARD (Guarding U.S. Medicare Against Rising Drug Costs) Model, CMS.gov (Dec. 29, 2025, 10:21AM), https://www.cms.gov/priorities/innovation/innovation-models/guard; Ctrs. Medicare & Medicaid Servs., GLOBE (Global Benchmark for Efficient Drug Pricing) Model, CMS.gov (Dec. 29, 2025, 10:21AM), https://www.cms.gov/priorities/innovation/innovation-models/globe.

^[6] See Partnership to Improve Patient Care, PIPC Response to Trump Administration’s Continued Push for MFN Pricing, https://www.pipcpatients.org (Oct. 6, 2025), https://www.pipcpatients.org/news/pipc-response-to-trump-administrations-continued-push-for-mfn-pricing; Alliance for Aging Research, Letter: Most Favored Nation Drug Pricing Model Encourages Discriminatory Metrics, Agingresearch.org (Jun. 26, 2025), https://www.agingresearch.org/news/letter-most-favored-nation-drug-pricing-model-encourages-discriminatory-metrics/.

^[7] See Letter from the Alliance for Aging Research to Ambassador Jamieson Greer, United States Trade Representative, June 26, 2025 (on file with the Alliance for Aging Research), available at https://www.agingresearch.org/wp-content/uploads/2025/07/USTR-2025-0011-00113189-CAT-6808-Public-Document.pdf (summarizing CMS’ admission that using an MFN pricing model would significantly decrease drug utilization because beneficiaries would have reduced access to drugs); Darius Lakdawalla & Dana Goldman, ‘Most-Favored Nation’ Drug Pricing Has Three Significant Problems, https://schaeffer.usc.edu (Apr. 14, 2025), https://schaeffer.usc.edu/research/most-favored-nation-drug-pricing-has-three-significant-problems/ (“And other developed countries have shown ample willingness to simply deny access to all their consumers if they are offered a price that they think fails to represent value, according to their artificially low conceptions of it”); Catherine Pham, Kim Le, Maisha Draves & Enrique Seoane-Vazquez, Assessment of FDA-Approved Drugs Not Recommended for Use or Reimbursement in Other Countries, 2017-2020, JAMA Internal Medicine, Feb. 13, 2023, 290-97, available at https://pmc.ncbi.nlm.nih.gov/articles/PMC9926356/ (“Lack of cost-effectiveness was also frequently described as a reason for a negative reimbursement recommendation in 29 of the 42 drugs…due to unacceptably high incremental cost-effectiveness ratio…”).

“What is a QALY?” Footnotes

^[1] Tim Stobierski, What is Health Care Economics? Online.hbs.edu (Mar. 23, 2021), https://online.hbs.edu/blog/post/what-is-healthcare-economics.

^[2] Nat’l Council Disability, Quality-Adjusted Life Years and the Devaluation of Life with Disability: Part of the Bioethics and Disability Series 12 (Nov. 6, 2019), available at https://www.ncd.gov/assets/uploads/reports/2019/ncd_quality_adjusted_life_report_508.pdf [hereinafter “NCD Report”].

^[3] Id. Kelly Israel is the NCD report’s primary author. Therefore, any similarities between the report’s language and that of this resource are due to common authorship.

^[4] NCD Report at 23-25.

^[5] NCD Report at 23.

^[6] NCD Report at 26.

^[7] Id.

^[8] Id.

^[9] Luis Prieto & José A Sacristán, Problems and solutions in calculating quality-adjusted life years (QALYs), Health and Quality of Life Outcomes, Dec. 2003, at 1 (“ The QALY calculation is simple: the change in utility value induced by the treatment is multiplied by the duration of the treatment effect to

provide the number of QALYs gained”).

^[10] Prieto and Sacristán, Problems and solutions in calculating quality-adjusted life years at 3; Off. Health Improvement & Disparities, Guidance: Cost utility analysis: health economic studies, Gov.uk (Oct. 13, 2020), https://www.gov.uk/guidance/cost-utility-analysis-health-economic-studies.

“Why Are QALYs Discriminatory?” Footnotes

^[1] Carli Friedman and Council on Quality & Leadership, Mapping Ableism: A Two-Dimensional Model of Explicit and Implicit Disability Attitudes, Canadian J. Disability Studies, May 2019, at 109-114 (finding that the vast majority of people surveyed were prejudiced towards people with disabilities, but they were subconsciously or aversively prejudiced rather than outwardly prejudiced); NCD Report at 29-30 (explaining that that the general population is who is most commonly surveyed).

^[2] NCD Report at 28.

^[3] NCD Report at 27-28.

^[4] NCD Report at 29.

^[5] Id.

^[6] See NCD Report at 31-32 (using an example to demonstrate why the QALY does this mathematically); Disability Rts. Educ. & Defense Fund, Pharmaceutical Analyses Based on the QALY Violate Disability Nondiscrimination Law, DREDF.org (Sept. 23, 2021), https://dredf.org/pharmaceutical-analyses-based-on-the-qaly-violate-disability-nondiscrimination-law/ (“For individuals with disabilities that will not be cured by medical intervention, extending their lives will be worth less under the QALY framework, resulting in a lower acceptable level of reimbursement by payers (such as health insurance plans), thus reducing the likelihood that life-extending treatments for people with disabilities will be covered or, if they are, making it more likely that they will only be made available with increased cost sharing or utilization management”).

^[7] Id.

^[8] NCD Report at 42, 43.

^[9] Supra note 7.

^[10] Catherine Burns & Vicki Loader, Breast cancer patients denied life-extending drug in cost row, BBC.com (Oct. 17, 2024), https://www.bbc.com/news/articles/c7v6g9q6rjqo.

^[11] Graham Cookson, Europe’s pharmaceutical policy choices – And what the United States stands to learn, OHE.org (Mar. 18, 2026), https://www.ohe.org/insights/europes-pharmaceutical-policy-choices-and-what-the-united-states-stands-to-learn/?utm_source=rss&utm_medium=rss&utm_campaign=europes-pharmaceutical-policy-choices-and-what-the-united-states-stands-to-learn

^[12] Id.

^[13] NCD Report at 51.

“Assisted Suicide, Euthanasia, and Quality-Adjusted Life Years” Footnotes

^[1] Stephen Barrie, QALYs, Euthanasia, and The Puzzle of Death, 41 J. Medical Ethics 635, 635-38 (2014), available at https://www.researchgate.net/publication/264432478_QALYs_euthanasia_and_the_puzzle_of_death.

^[2] Id.

^[3] Supra note 3.

^[4] Tim Stainton, Anscombe Bioethics Centre, Disability and Assisted Suicide: Elucidating Some Key Concerns 9 (2014), available at https://bioethics.org.uk/media/xwwnctsp/disability-and-assisted-suicide-elucidating-some-key-concerns-prof-tim-stainton.pdf.

^[5] Id.

^[6] United Kingdom Dep’t Health & Soc. Care, Impact Assessment: Terminally Ill Adults (End of Life) Bill (as amended in the House of Commons Public Bill Committee) (v1.1). No. DHSCIA9682. Parliament: May 14, 2025. Available at https://publications.parliament.uk/pa/bills/cbill/59-01/0212/TIABImpactAssessment.pdf.

^[7] Supra note 4.

^[8] Nat’l Council Disability, The Dangers of Assisted Suicide Laws 37 (Oct. 9, 2019), available at https://www.ncd.gov/assets/uploads/docs/ncd-assisted-suicide-report-508.pdf.

^[9] National Council on Disability, The Dangers of Assisted Suicide Laws at 20-21.

Conclusion Footnotes

^[1]John Harris, QALYfying the value of life, 13 J. Medical Ethics 117, 117-18 (1987), available at https://pmc.ncbi.nlm.nih.gov/articles/PMC1375658/pdf/jmedeth00262-0007.pdf.