The quality-adjusted life year (QALY) seeks to determine the value of health care treatments. Some patients are wary.
BY LOLA BUTCHER
AUSTIN WAS three years old and Max was a newborn when their mother, Jenn McNary, learned they had a rare genetic condition called Duchenne muscular dystrophy. The doctor painted a grim picture: Her boys would stop walking by age 12 or 13 and, shortly thereafter, they would require nighttime ventilation. They would each need a tracheotomy, a feeding tube, or both by their late teens. Death would come a few years later.
It hasn’t worked out that way, thanks to two new drugs that became available after the boys’ 2002 diagnosis. Exondys 51, a medicine that targets their genetic mutation, slows the disease’s progression, and Emflaza, a corticosteroid, mitigates some of its symptoms. Thanks to these treatments, Austin now attends college and interns at a biotech company. Max attends his local high school in Newton, Massachusetts. Both are able to get around in wheelchairs, and neither needs ventilation. McNary just rented an apartment for her boys because they can function on their own with the help of an aide.
By all accounts, the drugs have been transformative, McNary said. But, she added, her boys “aren’t going to be cured,” and extending and improving their life for an unknown period of time comes at a high price. Emflaza came onto the market in 2017 at an annual cost of $65,000. Exondys 51 appeared in 2016 at $748,500. Neither of the drugs will help the young men walk again and, in the eyes of some U.S. health economists, the drugs are not worth the price.
That’s why McNary hates the quality-adjusted life year (QALY, pronounced “qua-lee”), an economic calculation that attempts to quantify the value of a medical intervention, based in part on the quality of life it bestows on recipients.
First developed by U.S. economists in the late 1960s and early 1970s, variations of the QALY have been used for years by governments around the world to help determine what treatments citizens can obtain under public health care. In America’s free-market health care system, however, QALY calculations have largely been avoided. As McNary and others like her are finding out, that’s starting to change.
As policymakers and insurance companies scramble to get a handle on skyrocketing health care costs, they are promoting the idea of paying for value. In this view, drugs designated as higher-value should be prioritized over lower-value treatments. But this raises a thorny question: Who gets to define “value”? Health economists and insurance companies who seek to use limited health care dollars judiciously? Or patients, parents, and doctors who want to receive the best health care for their situation?
Because the quality-adjusted life year threatens her sons’ ability to get the medicine they need, McNary is clear about her answer. “To me, the QALY is a measurement that says that keeping my sons alive by providing incremental benefit but not totally curing them is never going to be valuable,” McNary said. “Just mull that around in your head — if you are less than perfect, you are worth less money.”
IN QALY MATH, a year of perfect health is equal to 1; death equates to 0. The value of other health states is derived from surveys of patients, caregivers, or the general public. Paralysis might be valued at .35, for example, and mild Alzheimer’s disease at .52, depending on the survey. Those numbers can then be plugged into a formula that allows the relative cost-effectiveness of treatments to be compared to identify the best buys.
Economists developed the QALY concept more than 40 years ago to address a fundamental question: “Where should we spend whose money to undertake what programs to save which lives with what probability?’ Richard J. Zeckhauser and Donald Shepard asked in a 1976 article describing the basic QALY formula. The next year, as U.S. health care spending topped $120 billion, Harvard health policy professor Milton C. Weinstein and his colleague, cardiologist William B. Stason, sounded an alarm bell. “It is now almost universally believed that the resources available to meet the demands for health care are limited,” they wrote in the New England Journal of Medicine. “We, as a nation, will have to think very carefully about how to allocate the resources we are willing to make available for health care.”
In QALY math, a year of perfect health is equal to 1; death equates to 0.
Their article — cited by other authors more than a thousand times in the past four decades — pointed out that resources were already being allocated by millions of individual decisions: hospitals rationing beds where they didn’t have room for all patients, for example, and insurers agreeing to pay for some tests and treatments but not for others. Such decisions, they argued, were often inconsistent with the “societal objective of deriving the maximum health benefits from the dollars spent,” an objective that could be achieved by putting the QALY to work….