The House of Representatives voted on legislation Wednesday that would send an important message to our nation’s most vulnerable. Lawmakers considered a bill that would prohibit the federal government’s use of a discriminatory metric that devalues individuals with disabilities.
As the mother of a daughter with special needs, I’m grateful the House passed this important legislation this week, and I hope the Senate will follow suit in short order.
The bill is H.R. 485, the Protecting Health Care for All Patients Act. The legislation would prohibit all federal health programs from using the Quality Adjusted Life Year (QALY) metric, or any similar measure, to determine the cost or coverage of health care treatments.
The QALY cost-effectiveness metric values an additional year of life for a person with disabilities as less than an additional year of life for a person in “normal” health. In so doing, this metric discriminates against some of the most vulnerable in our society. The National Council on Disability, on which I have served, published a report indicating that “QALY-based programs have been found to violate the Americans with Disabilities Act.”
Yet many countries use the QALY metric to determine the cost-effectiveness of prescription drugs or other treatments. For instance, Britain’s National Health Service (NHS) often refuses to cover effective therapies, because bean-counting bureaucrats deem them too “costly” for the government. This form of rationing — denying patients life-improving, or even life-saving, care on cost grounds — is most harmful to individuals with disabilities, because the QALY metric views their continued survival as not “worth it.”
And this type of neglect — overlooking those with the greatest needs — occurs not just in other countries, but in our own society. Unfortunately, several U.S. states and the Veterans Administration have started using cost-effectiveness research published by the Institute for Clinical and Economic Review, some of which resemble the QALY metric. Even the National Institutes of Health, by proposing the removal of the words “lengthen life” from its goals, sent a potentially harmful message to individuals with disabilities, as a bipartisan letter from senators recently noted.
In passing H.R. 485, Congress would take steps to correct this message by protecting the most vulnerable in our society. It would also follow in the footsteps of prior legislative measures restricting the use of the QALY metric.
In 2010, Congress and President Obama prohibited the secretary of health and human services from using QALYs “to determine coverage, reimbursement, or incentive programs under” Medicare. H.R. 485 would extend those important protections to programs like Medicaid, the State Children’s Health Insurance Program, and coverage for federal workers.
At a time when a handful of states — not to mention countries like Canada — continue to push for expansions of physician-assisted suicide, our country should engage in special efforts to stand up for the value of all human life — not just those individuals considered “healthy” or “useful.”
I applaud Rep. Cathy McMorris Rodgers, R-Wash., who, like me, is the mother of a special needs child, for introducing this important legislation. I hope Congress will send it to the White House, and that President Biden will sign it into law.
