The U.S. House passed H.R. 485, the Protecting Care for All Patients Act,  which would prohibit federal health programs from using discriminatory measures known as Quality-Adjusted Life Years (QALYs.) The bill passed by a vote of 211 to 208, with Democrats voting against it.

QALYs let the federal government reduce or end care for people with various disabilities, which can be seen as a form of eugenics — withdrawing medicines, for example, for people the government doesn’t believe have enough value. The term QALY glosses over a policy that can be traced to Nazi Germany. It’s the Death Panel that former Gov. Sarah Palin warned of.

Alaska’s Rep. Mary Peltola was a “no” vote, indicating support for the continued reduction of care for disabled people, per a government formula.

The last known case of “senilicide,” — the Alaska Native practice of putting an occasional elder on an ice floe — was recorded in 1939. It was a QALY way of rationing resources for some Arctic groups during times of tribal hardship.

The House legislation that is how heading to the Senate is led by  Rep. Cathy McMorris Rodgers of Eastern Washington and three others —  House Ways and Means Committee Chair Jason Smith (R-MO), Rep. Michael Burgess, M.D. (R-TX), and Rep. Brad Wenstrup, D.P.M. (R-OH).

“Every human life has value. The government should not be mercilessly placing a dollar value on someone’s life and denying care just because they have a disability or chronic illness. Patients, and those who are fighting for their loved ones’ lives, have pleaded with Congress to fix a system that actively prevents them from getting the care they need. I’m proud to champion this important legislation that will give patients with disabilities and chronic or rare illness hope,” said Rep. Rodgers, who chairs the Energy and Commerce Committee. 

“Bureaucrats in Washington and across the country are trying to put a price tag on life. The Protecting Health Care for All Patients Act, reaffirms that every life has value and stops individual Americans from being reduced to mere dollars and cents on a spreadsheet. An individual has worth, regardless of someone’s age or whether they have a disability or other chronic ailment,” said Rep. Smith of Missouri.

Rep. Rogers is the parent of a son with Down syndrome — he has an extra chromosome: “And like so many in the disability community, I was told by the doctors not to expect too much. As his mom, I’m glad to say they couldn’t have been more wrong. When we put limits on people and instead of setting them up for success, we all lose something, and Cole helps remind me every day that the disability community is full of potential just waiting to be unleashed.”

H.R. 485 would prohibit all federally funded healthcare programs, including the Veterans Administration, Federal Employees Health Benefits Program, and federally funded state health care programs from using Quality-Adjusted Life Years and other eugenics formulas.

The use of QALYs may affect Alaska Native children who have fetal alcohol spectrum disorders, the condition that results from alcohol use during pregnancy.

“The use of QALYs sends the message that the life of someone living with a disability doesn’t matter as much as a “healthy” person’s life. That’s why I led the Protecting Health Care For All Patients Act (H.R. 485) to ban federal health care bureaucracies like Medicaid and the VA from devaluing the lives of people living with disabilities,” Rep. Rogers said.

Medical professionals are increasingly uncomfortable having the government determine whether a person’s quality of life is worth the expense.

“The prospect of the denial of health care, for those deemed ‘unworthy’ has a long history in the eugenics movement,” wrote Paul Langley, a professor in the College of Pharmacy at the University of Minnesota. “If we are to finally rid ourselves of a ‘eugenic’ approach to health care resource allocation, then we must abandon preferences and the QALY calculus.”

In a paper available at the National Institutes for Health, Langley wrote, “There are different types of problems with the use of QALYs and DALYs for measuring health benefits. Some of these problems have to do with measurement, for example, the weights they ascribe to health states might fail to reflect with exact accuracy the actual well-being or health levels of individuals. But even if these weights represent accurately the well-being levels of individuals, there is room for questioning whether these measures capture everything that we care about in these cases, or whether there are important issues that they leave out, including considerations of fairness or equality.”

Langley wrote of how QALYs are a one-size-fits all approach, without regard to individuals’ prospects.

“In this regard, the measures have been criticized for treating the aggregation of small benefits as greater than the aggregation of fewer but bigger benefits, for disregarding fair chances in favor of utility maximization, and for raising problems when applied in the context of variable population size,” Langley explained.

“Perhaps one of the most pervasive ethical issues that has been associated with the use of these measures is the fact that they seem to discriminate against disabled people^. Since the measures assume that disabled people have lower well-being and a shorter life span, treating a disabled person’s medical condition contributes less to the maximization of years of life with good health than treating a non-disabled patient’s medical condition,” he wrote.

In another paper published by the National Institutes of Health, a health professor says the QALY formula doesn’t even add up.

“Furthermore, our review of the mathematical properties of QALYs, including an analysis of quality-of-life utility (QOL utility) data recently collected from patients with inflammatory bowel disease (IBD), has led us to conclude that QALYs are an inappropriate metric of drug and treatment cost-effectiveness for all people, both disabled and nondisabled, and should not be the basis for US healthcare policy decisions,” wrote Tia G. Sawhney, a professor at New York University.

“QALYs are time-based, health-related QOL utility measures. Health-related QOL utility measures purport to express the quality of a person’s life on a 0 to 1.00 scale, where 0 is death and 1.00 is perfect health. A QOL utility is converted to a QALY by multiplying the QOL utility by the number of years a person experiences that QOL,” Sawhney explained.

Health is a multidimensional, highly personal experience, she said. “If we ask relatives, friends, and strangers how they measure their health and quality of life, their responses are likely to be as complex and unique as snowflakes. Yet, QOL measurement developers reduce quality-of-life measurements to a handful of simplistic questions. Furthermore, their question sets are inconsistent with each other and with common perceptions of health.”

The Alliance for Aging Research supports the bill, and said it was disappointed there was not bipartisan support.

“Preventing discrimination in healthcare should not be a partisan issue. We encourage the Senate to take up this important issue and reach bipartisan consensus to ban the use of the QALY and similar metrics,” the alliance said in a statement.