How QALYs Fuel Health Disparities
The utilization of Quality-Adjusted Life Years (QALYs) metrics to determine the cost-effectiveness of the development, delivery, and detriment of medications, operations, and other health interventions may result in unacceptable long-term impacts on people living with disabilities or chronic illnesses, including HIV, Rheumatoid Arthritis, and other long-term illnesses that are expensive to treat. QALYS are very likely fueling health disparities.
The QALY was developed in the 1970s as a way to measure “…the state of health of a person or a group of people in which the benefits, in terms of length of life, are adjusted to reflect a quality of life” (MacKillop & Sheard, 2018). One QALY equals one year in “perfect” health, and QALY scores range from 0.0 (dead) to 1.0 (perfect health), where the value of an intervention versus no intervention is evaluated and used to determine whether or not a treatment is cost-effective or “worth the money” in exchange for extended “perfect” life (Figure 1).
To boil this down to an easier explanation, “the QALY is the academic standard for measuring how well all different kinds of medical treatments lengthen and/or improve patients’ lives” (Institute for Clinical and Economic Review (ICER), 2025). QALYs have frequently been used by insurers, public payors, and governments around the world to determine whether or not medical treatments are cost-effective to cover for patients—often without any input from or consideration of the patients whose lives are impacted.
If the math behind QALYs seems obtuse, you’re not alone—one of the primary criticisms of the QALY is that the methodology behind determining how a QALY is measured is predicated upon a lot of assumptions that may or may not hold true across every community. Some recognized experts who have studied QALYs have expressed concern over their impact on health equity.
Matt Toresco, CEO of Archo Advocacy LLC and ELAVAY—two patient advocacy organizations—conducted research through ELEVAY of over 120 patient advocacy organizations on the effectiveness of QALYs, including knowledge of QALYs and their impacts. Their research found that just 22% of respondents considered themselves to be knowledgeable or well-versed on the subject, compared to 57% who responded having just a cursory understanding of QALYs or their impacts. Over a third of respondents (35%) had little to no knowledge of QALYs (Archo Advocacy, 2024).
According to Toresco: "QALYs, while intended to provide a standardized measure of health outcomes, often fall short in capturing the nuanced realities of diverse patient populations. The assumptions underlying QALYs can inadvertently perpetuate health inequities, particularly for marginalized communities. Our research at Archo Advocacy and ELAVAY highlights a significant gap in understanding and awareness of QALYs among patient advocacy groups, underscoring the need for more inclusive and equitable health assessment tools. Quite frankly, current tools leave the individual, the patient, out of the equation and can do more harm than good."
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).
In 2024, PlusInc identified Ableism as a primary driver of the inequitable access to healthcare for people with disabilities. From the outset, we can identify ableism as a primary concern:
“Walking” presupposes that a person is able-bodied and automatically assesses someone who is incapable of walking or who needs assistance in walking (ie. a walker or cane) as being in “imperfect health.” This returns us to last year’s article that described medicalizing disability (the Medical Model of disability) essentially views a disability as a problem to be fixed (Hopkins, 2024). With this definition of “perfect health,” any treatment that does not “fix” a disabled person’s ability to walk without assistance will not be considered cost-effective.
The second measure—washing and dressing oneself—presents the same problem. This definition again presumes that anyone who needs assistance with performing these tasks is living in “imperfect health.”
Beyond concerns of ableism, QALY metrics further fail to consider how individuals experience pain, discomfort, anxiety, and depression. Moreover, they fail to consider day-to-day circumstances that may positively or negatively impact a respondent’s answers. If, for example, a person just received news that they were pregnant, whether or not they perceive that event to be a happy occasion could positively or negatively skew their responses to multiple questions.
This gets to bigger questions that plague both the QALY measurement, itself, and cost-effectiveness as a metric for determining the “worth” of a treatment:
What are the moral and ethical implications of measuring the “value” of a life?\
Who is anyone to determine whether or not one person’s life is more valuable than another’s based upon subjective “quality of life” measurements?
When drugs and surgeries are being developed, do we—as a society rather than a company—have a duty to the patient first or to financial considerations?
How do governments and society writ large value the lives of people with chronic, complex, or disabling health conditions, regardless of how “permanent” or “temporary” those health conditions may be?
These fundamental issues with how QALYs are measured make their use in cost-effectiveness calculations suspect, at best, and discriminatory, at worst.
Because chronic illnesses and rare diseases are more expensive to treat, both in the short and long term, medical interventions to treat them are frequently targeted as being “too expensive to be worth the cost.” This applies not only to medications to treat or prevent HIV, but to cancer therapies, inhalers, new diabetes treatments, and other illnesses from which people of color, people with lower incomes, and people living with disabilities are more likely to suffer.
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According to Amanda Boone, Co-Founder of Cystic Fibrosis United, ICER attempted to create a secondary or complementary metric, called the Equal Value of Life Years Gains (evLYG) in an attempt to address concerns about ableism.
The evLYG differs from the QALY only in that it attributes to all added lifetime gained from treatment the same “good” quality of life rating. This approach eliminates any hypothetical risk that treatments that extend life for patients with an underlying chronic condition or disability would be valued as producing less “health gain” than a treatment that extends life a similar amount for a condition without any underlying reduction in functional status or quality of life. As an example, using the evLYG as the measure of health gains from treatment, if a treatment adds a year of life for patients with a condition like muscular dystrophy, the treatment will receive the same evLYG “score” for that added life extension as would a different treatment that adds a year of life for a different condition with less functional limitations, such as hypertension (Morris, Jr. & Gabay, 2021).
This definition, pulled from a report commissioned by the Institute for Clinical and Economic Review, or ICER, to evaluate whether or not the use of QALYs and evLYGs violate the federal Americans with Disabilities Act (ADA), briefly explains the difference between a QALY metric and evLYGs.
“They are also not great for disabled, elderly, chronically ill, et cetera,” stated Boone.
This report drew considerable condemnation from many within the disability rights community. The Disability Rights and Education Defense Fund (DREDF), speaking of this evaluation of QALYs and evLYGs:
The evLVG differs from the QALY in that it only considers the quantity of life extension that a given drug or treatment will afford an individual, without discounting on the basis of utility weights – essentially, it provides for undiscounted life years. Use of the evLYG eliminates the risk of undervaluing life-extension for people with disabilities. However, this comes with an unacceptable price. The structure of the QALY makes use of the same weighting scheme for indicating improvements or reductions in quality of life as it does for indicating the value to ascribe to life-extension. Because the evLYG still makes use of the same methodological framework as the QALY, by eliminating discounting of life-extension it also affords no value to quality-of-life improvements, as it has no mechanism to ascribe value to symptom reduction without discounting the value of life-extension. As a result, it has limited usefulness in evaluating the value of a treatment. Contrary to the implication in the Epstein Becker Report, ICER does not combine the QALY and evLYG into a hybrid model; instead, ICER calculates the measures independently and then recommends the results of one or the other. Thus, adding the evLYG is not a solution; it merely forces payers to choose between one measure that undervalues life extension (the QALY) and one that affords no value to quality-of-life improvements (the evLYG). Neither account for both the full value of life-extension and the value of quality of life improvement (DREDF, 2021).
While ICER’s footprint in Europe and other parts of the world is large, Toresco indicates that their influence is smaller in the United States.
“Using QALYs as part of a cost-effectiveness analyses (CAEs) can be used to ultimately block treatments for individuals,” said Toresco.
Boone, however, worries that health insurers are reimbursing drugs based upon ICER’s drug value, which is concerning. She pointed us to the National Council on Disability, an independent federal agency established in 1978, and their 2019 report on Quality-Adjusted Life Years and the Devaluation of Life with a Disability. In that report, they recommended the following:
Insurance programs jointly run by the Federal Government and the States, such as Medicaid, should not rely on cost-effectiveness research or reports that gather input from the public on health preferences that do not include the input of people with disabilities and chronic illnesses, and;
CMS should utilize well-established alternatives to QALYs, such as MCDA, which is a method that better acknowledges the complexity of healthcare coverage decisions, or cost-benefit analysis, when the exact benefits and costs of a drug or treatment are known. CMS could utilize these methods in combination, such as using cost-benefit analysis as one component of an MCDA. If CMS does utilize cost-effectiveness analysis, it should consider utilizing it as one component of a condition-specific MCDA (National Council on Disability, 2019).
Jen Laws, President & CEO of the Community Access National Network (CANN), brought up an example of how QALYs have been used to justify not only treatments for diseases, but preventative treatments to prevent their transmission.
“We know that QALYs and other "cost-effectiveness" metrics which devalue the lives of people living with HIV have a consequential impact on access to care and prevention innovations,” Laws said. “Whether private or government-sponsored, payors are often focused on short-term financial interests, and this meaningfully impedes patient choice—if the payor won't cover the medication, it is not meaningfully accessible or something a patient can choose. This creates a perverse incentive to prioritize financial pressures over patients' humanity and well-being: ‘who is worthy’ based on preconceived notions of ‘societal productivity’ is an idea rooted in eugenics and ultimately self-defeating when it comes to tackling the world's greatest health care challenges.”
Laws cites a 2022 study on the cost-effectiveness of injectable forms of Pre-Exposure Prophylaxis (PrEP) to prevent the transmission of HIV. Essentially, Neilan, et al., attempted to determine whether or not long-acting injectable PrEP—delivered once every two months after the initial lead-in dose—was more “cost-effective” than daily oral dosing of PrEP using branded or generic Truvada (Neilan, et al., 2022).
“Neilan, et al., found that ‘...oral PrEP limits the additional price society should be willing to pay...’, Laws quoted. “The limitation? ‘Uncertain clinical and economic benefits of averting future transmissions.’ In the public health sphere, it is unquestionable that adverting future transmissions of HIV is of exceptional economic and clinical value; society benefits when pandemics come to an end. Further, we know injectable PrEP is ideal for some patients, increasing adherence, ensuring protection, and reducing overall health system burden. The only current injectable PrEP product on the market prevents an additional 4.5 more primary and secondary HIV transmissions than oral PrEP. That's worth paying for. Beyond that, on the individual patient level, the piece of mind in having consistent, reliable access to the medication we know works for us, is invaluable.”
Bridget Dandaraw-Seritt, Founder for Advocates for Compassionate Therapy Now, reminded us that an example of how QALYs have been used in the United States exists in the case of the state of Oregon. In 1989, the state of Oregon began using QALYs with its state Medicaid program, the Oregon Health Plan—a decision that, in 1992, the U.S. Department of Health and Human Services (HHS) found violated the Americans with Disabilities Act (1990). Oregon continued to use QALYs, however, to inform decisions and ration care under a Section 1115(a) waiver (Gallegos, 2021).
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This use of QALYs prompted the Oregon Senate in 2024 to pass Senate Bill 1508-A, which would prohibit the use of QALYs in Oregon. This ban went into effect on January 1st, 2025.
On the national front, HHS released guidance in 2024 related to the use of QALYs to limit access to healthcare because of the devaluative nature of QALY scoring:
Although recipients may make use of multiple factors to influence their decision-making, the use of a measure of value that assigns lower value to extending the lives of people with disabilities to determine eligibility, referral, or provision or withdrawal of an aid, benefit, or service can be nonetheless discriminatory;
While the nondiscriminatory use of value assessment is an important tool for health care cost containment, the Department agrees that discriminatory usages of value assessment harm people with disabilities and provide (Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance, 2024).
In response to rule changes and guidance put forth by HHS, ICER—which actively recommends and supports the use of QALYs for “cost-containment” purposes—issued a proposed framework that gives the impression that ICER is listening to their concerns and regulations:
In considering cost-effectiveness, [the state] cannot use cost-effectiveness analyses that use the cost-per-quality adjusted life year or similar measure to identify subpopulations for which a treatment would be less cost-effective due to severity of illness, age, or pre-existing disability. In addition, for any prescription drug that extends life, the [state’s ] analysis of cost-effectiveness must not employ a measure or metric which assigns a reduced value to the life extension provided by a treatment based on a pre-existing disability or chronic health condition of the individuals whom the treatment would benefit (Institute for Clinical and Economic Review (ICER), 2025).
While this blueprint statement gives the impression that ICER is being responsive to concerns about the utilization of QALYs to deny coverage and treatment, their underlying, fundamental purpose is to attempt to quantify the cost-effectiveness of—and therefore reimbursement rates for—medications and treatments using metrics that still devalue the lives of people who are disabled or chronically ill.
Additionally, the 118th Congress passed House Resolution 485—the Protecting Health Care for All Patients Act of 2023—along party lines. This bill had two primary provisions:
The bill would prohibit the use of QALYs by any federal health care program or federally funded state healthcare programs from using prices based on QALYs to determine relevant thresholds for coverage, reimbursements, or incentive programs, and;
Would reduce funding for the Prevention and Public Health Fund by $595 million between 2024-2029 (Protecting Health Care for All Patients Act of 2023)
While the bill had initial bipartisan support and sponsorship, the addition of the secondary provision stripping funding mandated under the Affordable Care Act from the Prevention and Public Health Fund, as well as concerns that the legislation could be used by pharmaceutical companies to raise prices without federal agencies considering using pricing metrics to determine those increases discriminatory, resulted in a party-line vote, with Democrats refusing to vote in favor of those cuts (Tong, 2024).
QALYs have been controversial in nature for a long time and in many ways, the “death panels” about which Republican legislators warned in reference to the Affordable Care Act specifically refer to their utilization to deny care and treatment to patients. That said, the United States’ healthcare system—at least those who receive coverage under private and commercial insurance, rather than public insurance—already operates under a system that still utilizes those metrics. So long as insurers, such as UnitedHealthcare, BlueCross / BlueShield, Aetna, and others rely on QALYs or similar discriminatory metrics to determine whether or not they will pay for care, disabled people and those living with chronic illnesses will always pay the price.