As a former California Congressman and founder of the Coelho Center for Disability Law, Policy and Innovation at Loyola Marymount University in Los Angeles, I am invested in advancing disability rights in California. I also believe it is imperative that health care, including prescription drugs, are affordable to all patients and persons with disabilities.
In March 2022, the Institute for Clinical and Economic Review (ICER) received a grant from the California Health Care Foundation, including support for its work to develop value assessments relying on QALYs. The Foundation is supported by Blue Cross Blue Shield of California and Anthem, and claims to have a mission to advance person-centered care — a mission that I agree with. Yet, ICER funds payer-centered value assessments intended for use by insurers and others to drive their decisions around coverage and reimbursement. ICER even calls QALYs the “gold standard” despite evidence of its implications for discrimination. With the Foundation’s investment, ICER has little reason to shift its methodologies to center on patients and people with disabilities.
As part of this grant announcement, ICER recognized proudly that policymakers are now “regularly referencing ICER’s health-benefit price benchmarks” and made no reference to the potential for discrimination from use of an inherently discriminatory metric to drive health care decisions. It is not a proud moment when people with disabilities and chronic conditions are forced to endure barriers to treatment because they do not fit the “average” used to determine whether a treatment is cost or clinically effective. According to ICER, the grant also supports ICER’s policy implementation work through the creation and publication of guides for policymakers, purchasers, and other decisionmakers in California.
California’s diversity is among its greatest strengths, yet ICER has been strongly critiqued for its reliance on average metrics that fail to represent diverse populations. ICER touts how its value assessments can be leveraged to reduce costs, but in reality, its value assessments developed for use by payers will benefit payers at the expense of access to care for patients and people with disabilities — not their benefit.
I urge California policymakers not to ignore the recommendations of so many disability rights leaders on this issue and to be skeptical about the ability of ICER to make fair health care recommendations on this vital issue. Importantly:
- The National Council on Disability, an independent federal agency advising Congress and the administration on disability policy, has been very clear in its recommendations that policymakers avoid reference to QALYs due to their discriminatory design and impact.
- The Disability Rights Education and Defense Fund (DREDF) has published a detailed report on how QALYs violate federal nondiscrimination laws.
- The Consortium of Citizens with Disabilities — a national coalition of disability organizations — has expressed support for banning the use of QALYs. Over 90 organizations representing patients and people with disabilities have called on policymakers to reject policies that discriminate and reinforce health inequities, including QALYs and similar metrics.
- Advocates including sickle cell patient organizations recognize that value assessments relying on average metrics that fail to represent people of color exacerbate health inequities and have called for them not to be embedded in how policymakers and payers value treatments. Notably, ICER makes no such commitment and does not disavow the QALY.
California’s experience developing Crisis Standards of Care during the COVID-19 pandemic should provide a valuable lesson. The initial guidelines published April 19, 2020, adopted a point system that directed scarce resources to younger people, those thought to have longer life expectancies, and individuals without certain pre-existing medical conditions. In response, more than 60 community and advocacy organizations representing millions of Californians opposed it for discriminating against people of color, disabled people, higher weight people, and older adults. The state made significant changes to ensure their standards did not rely on discriminatory metrics such as age, race, disability or perceived quality of life to ration care in a shortage.
Similarly, I would urge California to reassure beneficiaries across the state by banning the use of QALYs just as Congress banned the use of QALYs in Medicare. This would also ensure that no entities intent on influencing policy, including ICER, could sneak QALYs into coverage and benefit decisions for Californians. Reducing people to a one-size-fits-all standard of health care is not the equitable way to reduce health costs. A payer Foundation’s investment in ICER does not justify the state leveraging its work and exacerbate health inequity.