Just over a year ago on Capitol Hill, on February 1, 2023, the House Committee on Energy and Commerce held a joint hearing on proposed legislation, HR 485, the Protecting Health Care for All Patients Act. The bill is more commonly known as the Lives Worth Living bill, and recently passed a vote in the House of Representatives.

The Lives Worth Living bill was proposed by Republicans on January 24, 2023, highlighting an issue that has become increasingly relevant in today’s medical, social, and political landscapes: the use of a measure known as the quality-adjusted life year, or QALY, as a pharmaceutical and health care benchmark.

In the simplest terms, QALYs are a metric developed to help determine whether a medical intervention used to improve a patient’s life is cost-effective, asking the question about whether it improves QALYs sufficiently relative to the cost. The Republican-led bill would ban the use of QALYs—which are currently being used—as a methodology for denying health care insurance and medical treatment or equipment.

Internalization of a Life Worth Living

Before fully unpacking this bill, I want to touch on why this issue is so important to me personally.

I have first-hand experience with insurance, and indirectly, medical professionals, using QALYs not only as a benchmark for success in my life but also as a rejection of my needs. Quality-adjusted life years are used by health care system administrators to measure and rate whether someone—a patient with a medical need—is worthy of investing in; that is, the decision of whether to provide a specific medication, device, or service, is made by trying to measure how many quality life years they think the person has left to live, based on their disability and contrasting it with their current ability level. For example, a person who is born physically disabled, who doctors think will have a limited chance for walking, will not necessarily be prioritized to get physical therapy to learn to do so, because medical professionals have argued that the investment is too great for too small a payoff.

As someone who has muscular dystrophy, my family and medical professionals pushed me to learn to walk—to fight to keep walking—from an early age, because it meant I would have a greater potential to receive insurance for physical therapy. Cyclically, walking would allow me to qualify for insurance to pay for physical therapy, which would allow me to keep walking, which would allow me to keep getting physical therapy.

The argument from the balance sheet perspective was that keeping me walking would help me maintain more of my independence—or, more importantly, keeping me walking would keep me less expensive than if I couldn’t walk. Yes, insurance would have to keep paying for physical therapy to keep me walking, but I would be less likely to need the power wheelchair and continuous positive airway pressure (CPAP) device or personal care assistance, all of which I use now. As a child, I internalized that calculation to mean “the level of care we give people (not that people should receive) is holistically dependent and equated on their concrete and unchanging level of independence at a fixed point in time and can be equated to a monetary value. Able bodied people are worth more. I am more expensive and also worth less.” Heavy internalization for a child.

As someone who experienced a rapid decline in my physical ability in my teenage years, after walking in childhood, I know these types of calculations to not only be a current practice, but also perceived as true—both medical professionals and insurance companies are culpable of placing a monetary value on someone’s potential health, or lack thereof, and locking in that value. If someone’s value is judged too low, or too much of a financial risk, the investment in medical intervention will not be made, and the quality-adjusted life years of that individual will suffer because they have been denied the best option of treatment without a fighting chance. If that person’s value initially is judged too low, and changes, professionals will continue to attempt to hold the person’s value at that same bar, forever, denying them the services and support they didn’t need before, but need now.

Quality-Adjusted Life Years, in Practice

Digging deeper, the quality-adjusted life year is a medical and academic measurement system for how well, or how poorly, a specific medical treatment could lengthen or improve a patient’s life. It is used as one of the primary assessment methods to assess cost-effectiveness for over thirty years. It asks the question, “Which treatment may not be the best option for my patient, but will be the most cost effective, year in, year out?”

If there is evidence to show that a treatment helps improve or extend someone’s life, these benefits are added up to calculate how many additional quality-adjusted life years the treatment may add; that number is then compared to the added benefits of other treatments for the same patient population. While some argue that QALYs can be used to set, scale, and adjust consumer drug prices, the pharmaceutical and insurance system strategically filters and weighs expense over effectiveness or benefits to patients.

How are QALYs calculated? From ScienceDirect:

Basically, one year of life spent in a certain health status may be preferable to one year spent in a different health status. A QALY uses a scale of 0.00 (dead) to 1.00 (perfect health) for each health status. It is the product of duration of life and a measurement of quality of life. For example, 2 years of perfect health = 2 QALYs. Therefore, 2 years in a status measured as 0.5 of perfect health followed by 2 years of perfect health = 3 QALYs. . . . In recent years, QALYs have added life expectations of patients into their calculations.

In plain language, it is the math equation insurance companies use to determine how “healthy” a person is, to decide if they are worth investing care in, and if so, how much or what treatment, based on a comparison to potentially similar cases. A major fault of the equation though, is that it places a greater value on a year of life for a “healthy” person than on a disabled person.

A major fault of the equation though, is that it places a greater value on a year of life for a “healthy” person than on a disabled person.

Organizations such as the American Association of People with Disabilities (AAPD), The National Council on Independent Living (NCIL), and The National Council on Disability (NCD), among others, wrote statements to Congress and the public previously, urging a ban on the uses of QALYs because of the damaging, eugenics-based philosophy it imposes on people with disabilities, among other vulnerable populations. NCIL noted in their Advocacy Monitor Newsletter that QALYs have been used to discriminate against people with disabilities; health programs, including state Medicaid authorities and health insurance companies, have had a motive to use the QALY to limit health care treatment coverage since the 1990s, and perhaps earlier. When the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, federal authorities found that Oregon’s proposal violated the Americans with Disabilities Act as inherently discriminatory.

Finding Common Ground

Given this background and the groundswell to address QALYs, it comes at no surprise policy makers have introduced the Protecting Health Care for All Patients Act. As one of the sponsors of the bill and chair of the House Energy and Commerce Committee, McMorris Rodgers (R-WA) argued “[there is] potential of every life,” regardless of whether or not a person has a disability. She made the case why a disabled person’s health or success should not be predetermined based on how much their treatment costs; instead, life should be valued over money. She noted that QALYs are used today, regardless of carrier or type of insurance, to make assessments on whether, in her example, a child with muscular dystrophy receives certain treatments based on their ability to walk or not. I know this to be true. For me, she was clear and persuasive in her argument that QALYs should not be used and should be banned, as in her proposed bill before the committee. If anything, she can point to me as another example.

Witnesses on the QALY issue included Kandi Pickard from the National Down Syndrome Society (NDSS), who noted “As a result of QALYs, access to and coverage of necessary treatments have been routinely restricted for patients who are deemed ‘too expensive’ or ‘not worth’ treating.”

In the midst of this discussion, there seems to be an easy opportunity for bipartisanship. The bill is a good bill, supporting democratic values and principles. Many of our core laws advancing rights of people with disabilities are bipartisan, as disability policy has historically been; from the 1964 Civil Rights Act, to the 1990 Americans With Disabilities Act, to John McCain’s defeat of the attempted repeal of Medicaid expansion in 2017, to the current administration’s Bipartisan Infrastructure Law recently passed and currently being implemented, giving people with disabilities, among others, the accessible infrastructure and support they need. QALYs seem a ripe opportunity for a bipartisan moment.

As Representative Bill Johnson (R-OH) put it, “[we would be entering] a dystopian healthcare future if we . . . ration[ed] healthcare [for patients and people with disabilities] with [qualitative adjusted life years].” What he failed to mention is that we are already there.

There could still be a moment of collaboration and united values, if Democrats and Republicans could agree and pass a version of this bill in the Senate, using it as a peacemaking tool of bipartisanship before sending it to the White House. As more people with disabilities are continually identified, through Long COVID, the silver tsunami, and other circumstances, we need to be supportive of each other, and of our health, and our parties, to build a foundational framework of support for the future. It is not too late to join forces and put the health of the American people first.