The new House GOP majority is already working to show its interest in protecting patients—especially the most vulnerable. On Feb. 1, the House Energy and Commerce Health Subcommittee held its first hearing of the 118th Congress to examine three pieces of legislation. One of the bills, H.R. 485, will go far to protect vulnerable patients from government bureaucrats rationing access to care.
The Protecting Health Care for All Patients Act would prohibit all federal healthcare programs from using quality-adjusted life years, or Qalys, to make coverage or reimbursement decisions. Qalys place a greater value on a year of additional life for a “healthy” person than they do for a person with disabilities. That’s discriminatory.
Many foreign countries use the Qaly standard to refuse to pay for treatments that government bureaucrats deem too expensive. These arbitrary rationing schemes often result in patients being denied life-saving, or life-sustaining, care.
As the mother of a daughter with cystic fibrosis, I have watched in horror as other countries’ health systems have denied access to treatments that could help children with similar conditions. Haggling over prices meant that Britain’s National Health Service denied patients access to Orkambi, a cystic fibrosis treatment, until 2019. That’s four years after American patients were given access to the drug. As a parent, I recognize how much children change and develop in four years, and what not being able to access a drug for that amount of time could mean—all because bureaucrats focused on cost-effectiveness and Qaly metrics over protecting the vulnerable.
In the past several years, Qalys have made their way into U.S. policy circles. The Institute for Clinical and Economic Review, or ICER, has focused on the measurement since 2015, when a grant from a billionaire couple, Laura and John Arnold, helped fund cost-effectiveness research for drug pricing using Qaly measurements. Some state Medicaid programs and the Veterans Administration have used ICER’s research, raising concerns about whether Qalys will lead to rationing of care for the most vulnerable in the U.S.
Thankfully, groups representing people with disabilities have publicly expressed their opposition to the use of Qalys. The National Council on Disability, a bipartisan federal council on which I served from 2020 to 2022, issued a report in 2019 noting that “QALY-based programs have been found to violate the Americans with Disabilities Act.” That same year, a coalition of disability groups wrote to members of Congress raising objections to legislation that would “effectively import a QALY-based and discriminatory system from abroad,” because “these [Qaly-based] systems are discriminatory against people with disabilities.”
Members of both parties have reason to support H.R. 485. Democrats enacted the first prohibition on Qaly usage into law as part of ObamaCare in 2010. Now, the Republican-controlled House can expand the existing prohibition, which currently applies only to Medicare, to all federal health programs, including Medicaid, veterans and Tricare benefits, and federal employee coverage.
Indeed, signs of bipartisanship emerged at last week’s hearing. Subcommittee ranking member Rep. Anna Eshoo (D., Calif.) said she “support[s] ending the use of discriminatory Qalys, because the metric devalues the lives of people with disabilities.” Committee chair Rep. Cathy McMorris Rogers (R., Wash.), whose son has Down syndrome and who introduced H.R. 485, noted that other countries using Qalys put the “most vulnerable” at “the back of the line” to receive life-saving treatments, and said the bill’s ban on Qaly usage for all federal health programs would “strongly affirm that every life is worth living.”
Using Qalys to make coverage or reimbursement decisions violates existing anti-discrimination laws designed to protect people with disabilities. I know the hurtful message it sends to vulnerable people like my daughter. Congress should demonstrate that it will protect patients like her by passing H.R. 485 and officially banning the use of Qalys in federal health programs.