How QALYs Lives of Disabled People And What We Can Do About It

A single number deciding who gets care sounds efficient—until that number discounts your life. We dive into the world of QALYs (quality-adjusted life years) with attorney and policy leader Sylvia Yee from the Disability Rights Education and Defense Fund to unpack how “objective” health economics can quietly devalue disabled people, shape coverage decisions, and ripple through prenatal testing and public policy.

We break down how the EQ-5D survey compresses life into five domains—mobility, self-care, usual activities, pain, and anxiety or depression—then turns responses into a score that reduces the worth of a disabled person’s year to a fraction. You’ll hear why valuations often come from the general public, not people living with the conditions, and how time trade-off and standard gamble questions import fear, stereotypes, and a myth of “perfect health” into budgets. From prenatal screening scenarios that frame disability as a loss to cross-country differences rooted in access and culture, we trace how bias becomes math and math becomes policy.

The conversation turns to COVID-19, where crisis standards and triage laid bare the stakes: limited beds and ventilators, snap judgments about life expectancy and “quality,” and real denials of care. We discuss the guardrails that helped—ADA, Section 504, and Office for Civil Rights guidance—and why proactive policy beats after-the-fact fixes. Then we explore better paths forward: multi-criteria decision-making that centers patient-reported outcomes,; research funding for fairer methods; transparent deliberation; and leadership from people with disabilities at every step.

If you care about health equity, prenatal ethics, disability rights, or how insurers decide what gets covered, this is a clear-eyed, practical guide to moving beyond one-size-fits-all metrics. Listen, share with a colleague, and tell us: what should count when we measure value in healthcare? Subscribe, leave a review, and join the conversation so more people can find this work.

More information:

Disability Rights Education and Defense Fund (DREDF)

National Council on Disability Report: Quality-Adjusted Life Years and the Devaluation of Life with Disability

Show Transcript

Genetic Support Foundation: https://geneticsupportfoundation.org/

Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/