Alliance Applauds HHS Efforts to Combat Discrimination Based on Disability

The U.S. Department of Health and Human Services (HHS) released guidance today that finalizes proposals to update, clarify, and strengthen Section 504 of the Rehabilitation Act of 1973. Section 504 protects individuals from discrimination based on disability. The Alliance previously submitted comments on the proposed rule in November 2023.

While the rule addresses many areas, included in the regulation are protections against discrimination in medical decision making. The rule also makes it clear that the use of metrics that discount life-extension on the basis of disability is not allowable in the creation of formularies, development of utilization management protocols, and setting of reimbursement rates. Alliance Vice President of Public Policy and Government Relations Michael Ward, MS, issued the following statement:

“The Alliance applauds HHS’s efforts to combat discrimination based on disability in healthcare. Today’s rule addresses several important areas to make clear that biases, assumptions, and judgments about the lives of people with disabilities have no place in healthcare decision-making, including in crisis standards of care.

The Alliance also appreciates HHS’s acknowledgement that, while stakeholders may have used discriminatory metrics such as the quality-adjusted life year (QALY) and similar metrics in the pursuit of other laudable goals such as program sustainability, the end does not justify the means. We hope this landmark regulation spurs development and investment in additional patient-centered research and methods and reorients discussions around value to focus on outcomes that matter to patients and their caregivers.

While the rule is significant, work remains to prevent discrimination. The Alliance calls on the Center for Medicare & Medicaid Services (CMS) to follow, without exception, today’s final rule and existing statutes barring the use of discriminatory metrics such as the QALY. Further, state affordability boards that use or have proposed to use discriminatory metrics should immediately reverse course. Finally, we ask Congress to adopt the provisions espoused in H.R. 485, the Protecting Health Care for All Patients Act, into law to prevent discrimination based on disability in all federally-funded programs, including those that support our nation’s veterans.”

About the Alliance for Aging Research

Since 1986, the Alliance for Aging Research has served as a trusted source of health information for both consumers and health care professionals on diseases and conditions that disproportionately affect older adults and has led numerous successful advocacy campaigns promoting the health and independence of older adults. The Alliance is dedicated to changing the narrative to achieve healthy aging and equitable access to care. We strive for a culture that embraces healthy aging as a greater good and values science and investments to advance dignity, independence, and equity. Learn more about the Alliance at www.agingresearch.org.