The fight against disability discrimination in health care is not new. For 30+ years we have fought the use of metrics that discriminate in our healthcare system, like the Quality-Adjusted Life Year (QALY). In 2019, patients and people with disabilities, myself included, dared to question House legislation known as H.R. 3 which sought to lower the prices of drugs by referencing discriminatory reimbursement strategies from foreign governments, many of which rely on the QALY thereby restricting access to care for people with chronic conditions and disabilities.
As stated by CBO, they used data from a number of ICER’s reports to quantify the incremental clinical benefit of a drug relative to alternative treatments to score the bill known as H.R. 3 in 2019. They recognized that ICER analyzes drugs that would probably be eligible for negotiation under this proposed law. As such, CBO measured a drug’s benefit using either incremental life years or quality-adjusted life years as reported by ICER, i.e. perfect health is 1 QALY and 0 is death. The CBO recognized concerns about the use of QALYs, particularly its potential to discriminate against older or disabled patients and inability to reflect patient-specific preferences for quality versus length of life. CBO stated, “Despite the limitations of using incremental QALYs and life years to approximate the benefit of a treatment, such an approach was the best available to CBO and is consistent with the approach taken by many countries to negotiate drug prices.”
As background, the initial CBO estimate in 2019 contributed to patients and people with disabilities withholding their support for H.R. 3, as it included a footnote referencing that cost savings came from their assumptions using QALYs. Our fears for how this legislation would model the restrictions to care in foreign countries using QALYs are confirmed with this more detailed information on CBO’s assumptions.
In the end, we all share the goal of lower costs in our health care system. Yet, people with disabilities are keenly aware that efforts to lower costs for payers too often translate into higher costs for those needing care when it is restricted from coverage as a result. Such policies become explicitly discriminatory when they rely on metrics that discriminate, such as the QALY and similar metrics that establish the value of treatments based on their effectiveness for the averages. I say it often that no patient is average. This is why we have stood firmly against any policy that would use the QALY or similar average metrics to determine the “value” of treatments, including those that reference third parties that rely on the QALY, including countries like Canada and the United Kingdom.
I am relieved that we are now seeing bipartisan opposition to the use of QALYs, whether from domestic entities such as ICER or foreign countries. Experts such as the National Council on Disability, an independent federal agency, share our concerns. NCD published a long report on how QALYs discriminate and provided recommendations against their use by policymakers, including opposition to importing QALYS from foreign countries. The DNC Platform now includes a statement against the use of QALYs. Senators on both sides of the aisle opposed the use of cost effectiveness based on metrics such as QALYs when creating the Patient-Centered Outcomes Research Institute (PCORI) and barred their use by PCORI and in Medicare in 2010.
It was important for CBO to publicly acknowledge concerns that quality-adjusted life years (QALYs) discriminate. People with disabilities have opposed their use for 30 years because they hurt people living with disabilities and chronic conditions. As we have researched and reported in partnership with the National Minority Quality Forum and groups representing patients with sickle cell disease, people of color are especially on the losing end of value metrics such as QALYs that discriminate due to a lack of representation in research data and heightened representation among populations experiencing disability and chronic conditions.
As Congress responds to the needs of Americans during the COVID-19 pandemic, it is essential to assure that the response actually meets their needs. Throughout this pandemic, we have had to fight for our lives against the incorporation of standards for care that would have otherwise discriminated against us in COVID-19 care. I could not be more proud of how the disability community has come together to fight for the value of disabled lives, especially those most at risk from COVID-19 infection.
Going forward, I have hope that we can put ideas about referencing QALYS and similar metrics from foreign countries to rest and invest in better solutions to make health care affordable for everyone. We don’t need to further entrench the stigma of disability especially during a pandemic.