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Don't legalize discrimination against people with disabilities

Kenneth E. Thorpe, Guest columnist
5:00 p.m. CT Jan. 14, 2020
Quality-adjusted life year cost-benefit analyses systemically undervalue the lives of patients with disabilities.
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 health care systems already rely on discriminatory means to deny certain treatments to people with disabilities. Bureaucrats in 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 health care research groups -- notably the Boston-based Institute for Clinical and Economic Review -- are urging the federal government, as well as private insurers, to adopt QALY assessments here in the United States.
These blatantly discriminatory assessments have no place in our health system.
QALY explained
What exactly is a QALY? Simply put, it's an attempt to quantify the value of a specific health care intervention, such as a new drug, a procedure or 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. Already in America, pharmacy benefit manager CVS Caremark has offered it clients -- major employers and insurers – a drug coverage plan that excludes drugs based on QALYs.
Patients with disabilities or debilitating chronic conditions 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.
Some lives don't have more value than others
Consider a person with a permanent disability who uses 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 this patient provides more QALYs from being treated, the drug would be considered more cost-effective for insurers to cover than the drug for a patient who uses a wheelchair.
When drugs that primarily treat people with disabilities score worse than mass-market drugs -- not due to an actual difference in efficacy, but simply because of a biased methodology -- that's discrimination.
Unfortunately, there are plenty of people in America who see no problem with these discriminatory analyses. Back in 1992, Oregon tried to implement a QALY-based rationing system for Medicaid. Thankfully, the federal government refused, noting that the scheme violated the Americans with Disabilities Act. Federal law also bans the use of QALYs in Medicare.
However, the Department of Veterans Affairs, responsible for providing coverage for the heroes among us -- including wounded warriors -- uses reports from QALY specialists at the Institute for Clinical and Economic Review to make drug coverage decisions.
This is unacceptable. QALY assessments institutionalize discrimination against people with disabilities and reduce their access to medicines and other needed treatments.
UK should serve as a warning
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.
Despite such horror stories, QALYs remain a popular metric among many decision-makers. According to Dr. David Wasserman, a bioethicist at the National Institutes of Health, "the use of QALYs has modestly increased in the face of opposition."
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, that doesn't mean their lives are less valuable or they are less worthy of treatment.
But that's precisely the premise behind QALY analyses, which are still considered legitimate by many policy-makers. 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.