Congress Weighs Strengthening Health Care Protections For People With Disabilities
The U.S. House of Representatives voted to bar Medicaid and other federal programs from considering a quality-of-life measure that could be used to discriminate against people with disabilities, but the bill’s future remains unclear.
The legislation known as the Protecting Health Care for All Patients Act passed on a party-line vote of 211 to 208 last week.
The bill would prohibit federal health programs from using a metric called Quality-Adjusted Life Years, or QALYs, that factors whether treatment is cost-effective enough to justify.
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“QALYs aggregate quality and quantity of life simply by lowering the value of a year of treatment by the degree to which an illness, disability, or other health condition is perceived to harm the person’s quality of life during that year,” according to a 2019 National Council on Disability report, which found evidence that QALYs could be used to discriminate against people with disabilities and recommended that the government take steps to rein in their use.
Existing law already bans Medicare from using QALYs, but the current bill would expand that to all federal programs including Medicaid.
“QALYs and other similar discriminatory measures assign a dollar value on the life of a patient to decide if a certain treatment is cost-effective, oftentimes discounting an individual’s worth and need for care solely because of their disability or chronic illness,” said Rep. Cathy McMorris Rodgers, R-Wash., the bill’s sponsor, on the House floor. “Measurements like QALYs remove the consideration of unique circumstances and health conditions of a patient and their doctor’s judgment from deciding what’s best for the patient.”
More than 90 disability and health advocacy groups including the National Down Syndrome Society, United Cerebral Palsy and the Autistic Self Advocacy Network are backing the bill, arguing that it would extend to Medicaid the protections already afforded by the Medicare program and follow through on the recommendations of the National Council on Disability.
“It is well documented that use of such measures results in barriers to care that come from assumptions that people with disabilities have a low quality of life and are not worthy of treatment,” the groups said in a statement. “Therefore, we urge Democrats and Republicans to come together in an act of bipartisanship to pass the bill and to avoid any amendments that would weaken the (Affordable Care Act) and (Inflation Reduction Act) protections against the use of QALYs and similar measures.”
But, Democrats on Capitol Hill and The White House are lining up against the legislation warning that it would undercut existing protections in the law and be paid for by taking away money from important public health programs.
“Federal law, including the Inflation Reduction Act, already prohibits Medicare from using QALYs in its coverage determination, and state Medicaid programs are required by law to cover all drugs,” said Rep. Frank Pallone, D-N.J. on the House floor. “Instead, H.R. 485 goes further than current law and opens a back door that will be used to bar the use of any value measures by the federal government and these measures are used by federal agencies such as the Centers for Medicare and Medicaid Services and the Department of Veterans Affairs and by states to negotiate fair prices for prescription drugs.”
Pallone said he sought to include an amendment clarifying that the bill could not be used to undermine the federal government’s efforts to lower prescription drug prices, but the proposal was voted down by Republicans.
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