The Bipartisan Policy Center recently hosted an event on drug pricing. The term QALY came up a lot, and the concept was the source of significant disagreement among panelists and audience members.
The discussion was illuminating, and patients should take heed. The conversation illustrated how little the patient experience will be taken into account by some voices in this debate.
QALY stands for “quality-adjusted life year.” The simplest definition we have found is this one: a QALY “is a measure of the value of health outcomes.” That is a short, but loaded, descriptor. It implies that an individual or an organization is trying to ascertain – for an entire patient pool – what a treatment might mean for an individual in terms of quality of life, or the years added to their life.
The Institute for Clinical and Economic Review (ICER), which this blog has discussed here, here, and here, uses QALY assessments to determine whether it believes certain treatments are overpriced. ICER, as our blog posts have noted, receives significant funding from John and Laura Arnold, the billionaire couple bankrolling the movement in favor of price caps on breakthrough treatments.
The Arnolds also provided funding for the Bipartisan Policy Center (BPC) debate. The debate was moderated by Avik Roy, another Arnold beneficiary, and included Dr. Peter Bach, who receives money from the Arnolds, too. (Republican Sen. Rick Scott also appeared at the event in support of price caps. Unsurprisingly, that stance previously has been praised by the Arnold-funded Patients for Affordable Drugs Now.)
On the panel, Bach defended the use of QALY assessment. He likened them to a ruler measuring height. But a QALY assessment is not objective, like a ruler. As a 2016 article in The Journal of Stem Cell Research and Therapy said, “Although the QALY metric represents the most rigorous methodological tool available for evaluating new therapeutics or technologies, a number of limitations in its application currently exist.”
One of those limitations is how the measurement accounts for the value of the lives of people living with chronic conditions and disabilities.
Former Democratic Congressman Tony Coelho (Calif.), who is now chairman of the Partnership to Improve Patient Care, has said, “When applied to coverage and reimbursement decisions, the result [of QALY] is discrimination against people with disabilities, a legal violation of the Americans with Disabilities Act when applied by state Medicaid programs and a violation of the statutory ban on use of QALYs when used in Medicare.” He noted, “Both Congress and HHS have recognized this” and he concluded “America’s sense of morality and ethic of equality makes [QALY] a bridge too far.”
Others at the BPC event echoed Coelho’s sentiments.
From the audience, Innovation and Value Initiative Executive Director Jennifer Bright said, “It’s completely legitimate to say that [QALY] isn’t good enough or it doesn't capture all of the aspects of value from a patient’s perspective.” From the dais, National Health Council CEO Mark Boutin argued QALY treats the lives of patients with disabilities and chronic conditions as “worth less” than healthier individuals. Boutin noted measures of drug value often have not taken patient input into account, and he said QALY “paternalism has to stop.”
And yet, the Arnolds continue to fund thought leaders to argue the opposite. That certainly is what Arnold-funded groups like ICER have done. As we have reported, they are telling patients and their families that they “don't have a vote.”
Bach and the Arnolds are right: QALY is a measurement. It’s just not the right one for American patients.