Americans Deserve to Know if a Treatment Improves Patients’ Quality of Life

The National Council on Disability (NCD) today issued a report expressing legitimate concerns that patients with disabilities may not get equal access to care, but then made the unfortunate decision to recommend that policymakers not use the Quality-Adjusted Life Year (QALY) to help determine what a fair price may be for that care.

ICER wholeheartedly agrees that cost-effectiveness analyses should never be used to discriminate against people with disabilities. However, Americans deserve to know if a treatment improves or harms patients’ quality of life. To throw out these measures is to reject patients’ lived experience – an experience that has taught us that quality of life should serve as the guide to fair drug pricing and fair patient access.

The NCD report relies on a skewed presentation of the fundamentals of health economics and bioethics, mischaracterized case studies of how cost-effectiveness is conducted, and mistaken reports of historical events related to the QALY. Further, it wrongly presumes that whatever price a drugmaker with monopoly power sets is inherently fair, immutable, and unquestionable. The report stirs fears about health care systems in other countries – systems that pay far less for prescription drugs yet arguably achieve better health outcomes. As a result, the NCD report does a disservice to further understanding of how cost-effectiveness is actually used in the real world to achieve both fair pricing and broader patient access.

We all want good access to treatment that can help us. And it is easy to understand the concerns of some disability groups who have historically had to fight hard for equal access to services. True discrimination against people with disabilities happens every day in this country when they can’t afford or access the care they need. But a fundamental reality is that high prices for drugs without any anchoring in how well those drugs actually work is driving up overall health care costs, and those spiraling prices lead directly to reduced access and higher out of pocket costs for all patients. Especially for people with disabilities who often have more health care needs.

Rejecting the QALY preserves the status quo – a broken system where drugmakers charge whatever price they like, insurers respond with barriers to access, and patients struggle to afford and access the care they need. That would be a true ethical tragedy for our nation.

To learn more about ICER’s perspective, read the commentary by our President Dr. Steve Pearson that was recently published in the Journal of Law, Medicine & Ethics: “Why the Coming Debate Over the QALY and Disability Will be Different.”