Nina Erbes, a white person with glasses and short reddish-brown hair, smiles at the camera. She wears a black blazer and a black and white button-up shirt.
Nina Erbes is a senior at Mount Holyoke College working toward a bachelor’s degree in anthropology. She is passionate about disability rights and smashing ableism in all its forms. She plans to continue to advocate for herself and the disability community in her future career, whether that takes the form of public health work or anthropological research.

This summer, I served as the American Association of People with Disabilities (AAPD) intern at AUCD. AAPD places future disability advocates who are students or recent graduates with internships in the Washington, DC area. While I was an intern at AUCD, Rylin Rodgers, AUCD’s Director of Public Policy, encouraged me to attend the briefing on Quality Adjusted Life Years (QALYs). It was an amazing and educational experience to sit in the middle of congressional interns and staffers and listen to the concerns of various members of the disability community about the use of QALYs — I got a new perspective on how disability advocates can make our voices heard in the legislative process.

QALY stands for “quality adjusted life year.” A QALY is a way for insurance companies to decide how much they will pay for certain medications and treatments for someone’s illness. The calculations for a QALY are based on the idea that one year in a healthy, abled person’s life is worth 1 QALY. (Someone who has died has 0 QALYs.) Different disabilities and conditions are given different number values, and part of the math for QALYs involves subtracting these small numbers from 1 QALY. After doing this math, an insurer may determine that a year for a person with a disability is worth less than 1 QALY. These QALYs are supposed to tell an insurance company whether they should pay for a treatment that allows a person to live for another year. QALYs are supposed to answer questions for insurance companies: “How good will that year be?” “How much should we pay for that medicine?” Insurers use these questions to decide how much to pay for a treatment, and sometimes they decide that they will not pay for a treatment at all.

QALYs in American Law

When the Affordable Care Act (ACA) was passed in 2010, it banned Medicare providers from using QALYs. Lawmakers believed QALYs were unfair to people with disabilities and illnesses. People writing the ACA wanted to make new treatments available to patients who needed them. Other laws have also made using QALYs illegal: in 1992, the federal government, led by President George H.W. Bush, decided that using cost-effectiveness measures (like QALYs) in Medicaid would go against the Americans with Disabilities Act. In 1973, the Rehabilitation Act was passed. Section 504 of this act banned discrimination against people with disabilities by any federal program, including Medicare. According to the Partnership to Improve Patient Care, this makes using QALYs to make healthcare decisions for people with disabilities illegal. The Americans with Disabilities Act expanded this ban on discrimination against people with disabilities to state and local government programs as well.

Problems with QALYs

In a briefing for congressional staffers and members of disability organizations, autistic activist Ari Ne’eman spoke about why many members of the disability community think QALYs are unfair to people with disabilities and illnesses. Representing the group Partnership to Improve Patient Care, Ne’eman said that QALYs make it seem like people with disabilities live worse and less worthy lives than people without disabilities. By giving a number value to a year in a person’s life, and saying that someone with a disability has a lower number than someone without a disability, QALYs ignore that people with disabilities can live good and full lives. If someone has a medical condition, a year in their life is not worth less than a year in the life of someone who does not. A person with a disability may live a different life than someone without a disability, but the life of a person with a disability is still just as valuable.

QALYs also don’t consider the experiences of people with disabilities. Someone with a disability knows what their own life is like, and an insurance company can’t know exactly how that person feels. In his speech to congressional staff, Ari Ne’eman gave the example of a person with multiple sclerosis (MS): an insurance company may put the label “mild” or “severe” on a person’s MS, but the person with MS does not experience their condition as a label. A person with a condition like MS lives every day with different symptoms. Their symptoms might affect their life more on some days and less on other days. This experience does not fit a label. The experience of treatment for a medical condition is also different for every person. When an insurance company uses QALYs, they are not paying attention to the feelings and experiences of individual people with disabilities.

Other patient advocates at the briefing spoke about how their organizations saw QALYs. Sara Van Geertruyden from the Partnership to Improve Patient Care spoke about how QALYs base their math on the idea of an “average” patient. Van Geertruyden said that there is no average patient because everyone is different, so “average” should not be the way to determine how people’s conditions are treated. Rachel Patterson of the Consortium of Citizens with Disabilities and the Epilepsy Foundation agreed with Ari Ne’eman that QALYs are unfair to people with disabilities — using measurements that suggest that some people’s lives are worth less than others is discrimination. Elizabeth Franklin of the Cancer Support Community brought statistical research into her presentation. She used information from surveys of patients to show what they thought about QALYs. 76% of people who answered the survey questions disliked QALYs. Franklin also saw in her data that patients didn’t know a lot about QALYs before someone explained the idea to them. This meant that patients didn’t understand how insurers were deciding to pay for their treatments.

QALYs have been rejected by lawmakers in the past. Some groups promote QALYs, but in government-run programs, they are illegal. QALYs are an issue that may keep coming up in future lawmaking. Organizations like the Partnership to Improve Patient Care make it a goal to make the case against QALYs. Patients and health care providers continue to push for an approach to health care that respects and includes the opinions, feelings, and lives of people with disabilities.