I introduced the ADA 35 years ago. Now Congress needs to act to ban a practice that devalues disabled lives

Thirty-five years ago, I was proud to introduce the Americans with Disabilities Act in the House of Representatives, because I know firsthand what it is like to be devalued due to a disability — by society, potential employers, even my parents and my church. My epilepsy came with the added stigma of old Catholic doctrine that I must be possessed.

As I get older, there is more to do to manage my quality of life. Yet some measures used to value health care exacerbate the stigma that suggests my age and disability make me less worthy of care. Since passage of the Americans with Disabilities Act (ADA) in 1990, I have joined the disability community in fighting against Medicare’s use of such measures that devalue disabled lives. We scored major victories when such laws passed as part of the Affordable Care Act (ACA) and the Inflation Reduction Act (IRA). But they can still be used in other programs to make decisions.

The House of Representatives will soon have the chance to change that by passing the Protecting Health Care for All Patients Act.

Years ago, the Affordable Care Act banned Medicare from using quality-adjusted life years (QALYs) — a metric used in cost-effectiveness analyses widely known to discriminate against people with disabilities — and similar discriminatory measures. For instance, the QALY metric assigns a person living with disability a lower value of a year of life than a person considered to have optimal health, and often fails to consider outcomes meaningful to patients such as the impact on ability to work or impact on caregiving needs. In a QALY-based cost-effectiveness assessment, a person living with conditions like heart disease, ALS, or sickle cell disease will be considered “worth less” to treat than others, and studies may not consider their quality of life improvements to be meaningful, thereby giving the treatment for such conditions a lower value and leading payers to give them less priority for coverage and potentially restrict their coverage.

The Protecting Health Care for All Patients Act would extend that ban to other federal health care programs, such as Medicaid.

But academics opposing the bill incorrectly suggest that the inclusion of “similar measures” is essentially a new policy that would impact Medicare’s recent authority from the Inflation Reduction Act to negotiate prescription drugs. They claim it would further limit evidence the Centers for Medicare and Medicaid Services can use to negotiate.

To be clear, this line of argument is unfounded: Current law already states, “The Secretary shall not utilize such an adjusted life year (or such a similar measure) as a threshold to determine coverage, reimbursement, or incentive programs under title XVIII.” The proposed legislation simply extends these protections to other federal programs.

The federal government’s own guidance should put to rest their concerns. CMS’ updated implementation guidance for the IRA’s Medicare Drug Price Negotiation Program specifically acknowledges that the agency is already subject to these nondiscrimination provisions in Medicare via both the IRA and the ACA. The Protecting Health Care for All Patients Act simply extends those laws to other programs.

Despite this, however, we have seen an onslaught of opposition from some in the academic community in the form of either blatant mischaracterization of the impact of the bill or, more recently, a stout defense of the QALY. The pro-QALY crowd has shifted to arguing that measures such as QALYs really aren’t all that bad and the ban on them should not be extended. Some academics argue that it is fine to use QALYs to make health care decisions that affect people’s lives and quality of life.

I vehemently disagree. And anyone who has found themselves without access to the care they need because an economist proclaimed their care was not worth it is also likely to disagree. We know too much how these algorithms for valuing health care devalue people with disabilities and chronic conditions.

The good news is that these academics face bipartisan support for banning QALYs.

The original QALY ban in Medicare passed as part of the ACA with strong Democratic support, as did the IRA provisions barring consideration of research that devalues older adults and people with disabilities. The Democratic National Committee platform clearly states opposition to using QALYs to make health care decisions. Now we have Republicans supporting legislation to extend Medicare’s QALY ban to other health care programs. This is meaningful consensus to be celebrated. Indeed, the proposed legislation by House Energy and Commerce Chair Cathy McMorris Rodgers, a Republican, delivers on a recommendation from the National Council on Disability, an independent federal agency advising on disability policy, calling for a consistent policy across federal programs against the use of QALYs and similar measures. A bill that simply extends current law can and should be bipartisan as it moves to the House floor for a vote.

Congressional Democrats decided to bar QALYs and similar measures in Medicare long ago when passing the ACA. The Protecting Health Care for All Patients Act is a rare opportunity to strengthen the existing ACA protections against discrimination with support from Republicans. I sincerely hope my colleagues will take this opportunity to protect people with disabilities from continued discrimination in our health care system.

Tony Coelho was a Democratic congressman from California from 1979 to 1989, a former House Majority whip, and an original author and sponsor of the Americans with Disabilities Act. He currently chairs the Partnership to Improve Patient Care.