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The Protecting Health Care for All Patients Act
HR 485 was introduced in the US Congress House of Representatives in January 2023, was batted around various committees and subcommittees through the spring and then things went quiet. It's now leapt back into life and rapidly passed through the House in February, with the vote going along party lines - Republicans in favor and Democrats opposed. It's now in committee in the Senate.
The bill seeks to bar the usage of Quality-Adjusted Life Year (QALY) to determine coverage in federal healthcare programs. Quality Adjusted Life Year is a measure that determines the value of a drug based both on the quantitative life expectancy increase and potential qualitative side effects and detriments to quality of life. The bill seeks to eliminate this measure as a determinant of a patient’s coverage of certain drugs. The bill would only apply to federal healthcare programs, in keeping with existing Medicare standards.
Read the IssueVoter analysis of opinions for and against here.
Photo by National Cancer Institute on Unsplash
QALY is Discriminatory Against Disabled Individuals
The bill was drafted by Eastern Washington Republican Congresswoman Cathy McMorris Rodgers. She feels strongly that using QALY to determine health coverage is effectively deciding that one person's life is worth less than another's.
“The ‘quality-adjusted life years’ measurement is used to discriminate against people with chronic illnesses and disabilities, like cystic fibrosis, ALS, or Down syndrome, putting them at the back of the line for treatment." she said.
She has the support of organizations such as the Alliance for Aging Research. Sue Peschin, MHS, President and CEO said, “The quality-adjusted life year (QALY) devalues the lives of older adults, people with disabilities and chronic conditions, and communities of color. The National Council on Disability has repeatedly warned against the use of QALYs in healthcare decision making because it would undermine major U.S. disability and civil rights laws, including the Rehabilitation Act and the Americans with Disabilities Act.”
The Bill is a Solution in Search of a Problem
Opponents of the bill point out that the use of QALY is already highly restricted, and so the bill is unnecessary. "Federal Law already prohibits Medicare from using QALYs in its cover determination, and state Medicaid programs are required by law to cover all drugs. So, I just don’t think this legislation accomplishes anything from a cost analysis, it’s just basically a solution in search of a problem that doesn’t exist..", said Democratic Rep. Frank Pallone.
There is further criticism that the bill could bar the federal government from using any kind of value measures to determine whether a particular drug or treatment should be covered, citing the “similar measures” language in the legislation stifling — or, at the very least, having a chilling effect — on all comparative effectiveness efforts.
In an opinion article published in June 2023 by the Journal of the American Medical Association, researchers argued that the critics of QALYs were mischaracterizing how they are used and that the analyses that do use them may show more benefit among people with a severe or disabling condition because they might experience the greatest health gains. They also warn about the “similar measures” leading to broad prohibition of comparative and cost-effectiveness research and sending a signal to drugmakers that they don’t need to assess health-related quality of life in clinical trials.
Photo by Myriam Zilles on Unsplash
Should QALY be banned?
As with most complex, medical and ethical matters of this kind there is no easy answer. Debates around the use of such measures have raged around the world for decades and they will only become more urgent as populations ages. Americans are living longer and having fewer children, so an increasing proportion of the population is older. This increase in life expectancy is not matched by the same increase in healthy life, meaning more and more Americans are older and suffering from chronic age related illnesses.
Treatments for these illnesses are expensive, and so all healthcare systems are having to decide how to allocate finite resources, and therefore need to measure the value of medical interventions.
QALY as a concept can be applied flexibly to accommodate issues raised by critics. Put simply, if QALY is being used to discriminate against the elderly or disabled then it can be adjusted to not do that. It doesn't need to be banned, with the potentially chilling effects that can have on vital research and development. There is a societal imperative for policy makers to make each dollar go as far as it can in terms of producing health outcomes for the population as a whole. If choices are not evidence based, then you risk ending up with random rationing which will hurt the most vulnerable the most.
I'll give the last word to Joshua Cohen, Senior Contributor for Forbes and the author of this thoughtful article: "The QALY isn’t perfect, but no measure is. And let's be frank, we’ll never have a measure that makes everyone happy. To ban the concept is to throw the baby out with the bath water."
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