Don’t legalize discrimination against people with disabilities

By Kenneth E. Thorpe

Imagine if the federal government treated disabled Americans as second-class citizens. It’s an appalling thought. But it could happen soon — if some special interest groups get their way.

Here’s how. In numerous foreign countries, government-run healthcare systems already rely on discriminatory means to deny certain treatments to people with disabilities. Those nations decide which new medicines to cover by using a biased metric known as the “quality-adjusted life year,” or QALY.

QALY cost-benefit analyses systemically undervalue the lives of patients with disabilities, as a new National Council on Disability study makes clear. Yet some healthcare research groups are urging the federal government, as well as private insurers, to adopt QALY assessments in the United States.

These blatantly discriminatory assessments have no place in our health system.

What exactly is a QALY? Simply put, it’s an attempt to quantify the value of a specific healthcare intervention — a new drug, a procedure, a prevention effort. If an intervention adds an additional year of perfect health to a patient’s life, she gains one QALY. If the intervention adds one year of less-than-perfect health to that patient’s life, she gains less than one QALY — perhaps 0.3 QALYs, or 0.5. Anyone less than “perfect” is assumed to gain less value from treatment.

Insurers and governments often use these crude measurements to determine if a new drug is worth covering. Insurers can reject medicines that don’t provide enough QALYs relative to their price.

Patients with disabilities are at a disadvantage when it comes to QALY analyses. That’s because the hidden assumption behind these analyses is that the lives of these patients are presumed to be of lesser value than those without disabilities.

Consider a person with a permanent disability who is confined to a wheelchair. Researchers, using QALY analyses, have decided that such patients’ health utility is just .5. Say a new treatment could extend this patient’s life by four years. A QALY analysis would still determine that the treatment provides only 2 QALYs, since patients would always need wheelchairs and will never be in “perfect” health.

By comparison, a drug of the same cost that extends an able-bodied patient’s life by four years would provide four QALYs. Given that his patient provides more QALYs from being treated, the drug would be considered more cost-effective for insurers to cover than the drug for the wheelchair-bound patient.

When drugs that primarily treat people with disabilities score worse than mass-market drugs — not due to an actual difference in efficacy, but simply due to a biased methodology — that’s discrimination.

This is unacceptable. QALY assessments institutionalize discrimination against people with disabilities and reduce their access to medicines and other needed treatments.

Just look at the United Kingdom, where the government-run health system recently used a QALY analysis to deny coverage for a new cystic fibrosis drug heralded as a significant breakthrough for that fatal disease. Government officials also rejected a breakthrough blood cancer therapy last year for similar reasons.

The continued use of QALY analyses is a moral atrocity. Just because people are blind, or need a wheelchair, or live with an incurable disease or genetic disorder, doesn’t mean their lives are less valuable or they are less worthy of treatment.  It’s time we ban the use of these unethical assessments and treat disabled Americans with the dignity they deserve.

Kenneth E. Thorpe is a professor of health policy at Emory University and chairman of the Partnership to Fight Chronic Disease