Odd bedfellows on Capitol Hill have found a potential point of agreement: banning the use of quality-adjusted life years when evaluating whether treatments and drugs are cost-effective. The wonky metric aims to measure health outcomes and quality of life, but critics say it hurts people with disabilities’ chances of getting treatments they need by downgrading the difference that treatments and drugs make in their lives. Lawmakers from both parties have backed legislation from Energy and Commerce Chair Cathy McMorris Rodgers (R-Wash.) and Ways and Means Chair Jason Smith (R-Mo.) that would prevent federal programs from using it. Why so? The Affordable Care Act already bans the use of QALYs in Medicare “as a threshold to determine coverage.” Peter Neumann, director of the Center for Evaluation of Value and Risk in Health at Tufts Medical Center’s Institute for Clinical Research and Health Policy Studies, told Ben that a larger ban wouldn’t change the status quo much. It could play a role in upcoming Medicare drug price negotiations, he acknowledged, but he doesn’t think that’s likely. “It’s so politically explosive. I think they’ll find other ways as the basis for value-based, negotiated price,” Neumann told Ben. QALYs are the “academic standard” in health economics, explained Steven Pearson, president of the Institute for Clinical and Economic Review, a nonprofit research organization, and they are used by drug companies, consultants and some federal policymakers. CDC and NIH have done research using QALYs, he added. Even so: QALYs do not affect, directly or indirectly, decisions on who gets access to a treatment, Pearson wrote in an email. Other measures of health can be used with, or instead of, QALYs, to avoid undervaluing treatments for people with disabilities, he added. “Cost-effectiveness as a tool in general offers one of the best ways forward to ‘right-size’ prices and to help make treatments for all patients more affordable and therefore accessible,” Pearson said, adding that countries such as the U.K., Canada and Australia have used QALYs to “negotiate much lower prices” for drugs than Americans pay. Counterpoint: Kandi Pickard, president of the National Down Syndrome Society, testified before the Energy and Commerce Health Subcommittee this week in favor of ending the metric's use. She called out the Centers for Medicare and Medicaid Services’ recent decision not to cover Alzheimer’s drug Aduhelm outside of trials as an example of how the metric can harm people with disabilities. Alzheimer’s is the leading cause of death for people with Down syndrome. A CMS spokesperson said that the agency did not use QALYs in making its decision. The studies CMS cited in approving the drug showed it reduced amyloid build-up thought to cause Alzheimer’s, but there’s not yet evidence that it helps patients retain cognition. The medicine costs almost $30,000 a year. In announcing its decision to not cover the drug for most Medicare patients, CMS indicated it wanted more evidence showing its effectiveness, but CMS Administrator Chiquita Brooks-LaSure said the price tag was not an issue. Her agency, she said, is committed “to provide the American public with a transparent, trusted, evidence-based decision — without regard to cost.” Democratic opposition: Though Energy and Commerce Health Subcommittee ranking member Anna Eshoo (D-Calif.) said she was generally supportive of barring the metric’s use, other Democrats suggested that the bill could sink the Medicare drug price negotiations mandated in last year’s Inflation Reduction Act. “I fear this bill could be a Trojan horse that goes far beyond just banning [quality-adjusted life years], by potentially banning all other kinds of ways of measuring a drug’s value,” said Frank Pallone (D-N.J.), the ranking member of the full Energy and Commerce panel. | 
