Is the administration looking out for Americans living with disabilities?
On the 30th anniversary of the Americans with Disabilities Act (ADA), our celebration was marked by the need to defend disability rights against an onslaught of new threats. Those have come at us throughout this administration — from efforts to repeal and replace the Affordable Care Act (ACA) that ensures people with preexisting conditions have health insurance, to the House Republican bill to gut the ADA’s protections in 2017, to the administration’s proposed “demonstration” project in 2018 referencing foreign prices in Medicare that would have undermined a key ACA protection for people with disabilities.
Here they go again — in the middle of a pandemic, no less — looking to a public health emergency as an excuse to eliminate the basic civil rights of people with disabilities, including patients with chronic diseases and older adults, who are most vulnerable to the COVID-19.
In the last week, we watched President Trump panic at his sinking poll numbers and decide to issue a slew of executive orders — more to create talking points for his campaign about how he was “lowering drug prices” and with little consideration for the practical reality that the policies do nothing to provide relief to Medicare beneficiaries with their out-of-pocket costs. The most troubling is the one not yet released, which the president has described as imposing deep price cuts on physician-administered treatments in Medicare by importing prices set by foreign governments based on the “patient unfriendly” quality-adjusted life year (QALY) metric.
Today, the ACA bars Medicare from using QALYs because they discriminate. The administration wants to sneak it into Medicare through the back door. It’s a pointless, dangerous idea.
Since the president first presented so-called international reference pricing in 2018, patient and disability groups have educated policymakers on its implications for importing discrimination. The National Council on Disability, an independent federal agency advising the president and Congress, issued a report calling on the administration to rescind its proposal. The council noted that the United Kingdom uses QALYs when determining what the National Health Service (NHS) will cover, simultaneously acknowledging that their health outcomes for some patients (such as lung cancer) and people with disabilities are notably worse than in the United States. It called the resulting rationing an “existential threat” to people with disabilities.
The president proposes importing those very standards under the veil of a “most favored nation” policy. The irony is that older adult voters who the president is trying to woo are among those most hurt by a policy that incorporates “life years” into the calculation of how to value treatments. For over 30 years, we have fought QALYs and their systemic bias against treating people at the margins who don’t fit the “average,” whether it’s people with disabilities, older adults or people of color. Even my own party has not always gotten this right.
Clearly, the fight for our health is far from over. In Canada, Sandy Stevens was told by doctors that her daughter with cystic fibrosis must intentionally reduce her lung function to qualify for the treatment that would save her life; they did not deem paying the cost of the medication she needed as necessary until her lung function had regressed so far that she may never get it back — clearly valuing money more than a 14-year-old’s life. Abroad, people with disabilities face discrimination that is sometimes explicitly sanctioned by policies to ration health care, whether due to shortages that emerge in a pandemic or by relying on a cost-per-QALY equation.
By law, the U.S. is different. But we are seeing this mentality creep in via proposals to import pricing policies from countries like Canada or to ration care under COVID-19. In Texas, Michael Hickson, an African American man in a wheelchair with preexisting brain damage, entered a hospital with COVID-19 and doctors decided — in defiance of his wife, and likely in violation of U.S. civil rights laws — that his life wasn’t worth saving. To them, he had no quality of life. Cases like Michael Hickson’s are stark reminders that we could live in a world like Sandy Stevens’s, if we don’t fight.
Policymakers could instead focus on ensuring that every American is supported throughout this crisis. That means lowering overall out-of-pocket health costs, ensuring people have access to the range of care they need and avoiding policies that discriminate or restrict care access. Or supporting people in their homes instead of in nursing homes and congregate care. Or enforcing civil rights laws, not rolling them back, so that all American lives are valued. Or holding businesses more, not less, accountable to their ADA obligations — as in making websites disability-accessible.
As a former congressman, I understand election-year political posturing. But the Republicans’ recent Senate bill proposing liability exemptions from civil rights laws following the president’s “most favored nation” executive order — issued with no consideration of its harms or legality under laws like the ADA — went too far. At least one in four people has a disability, over half of American voters have a disability or a loved one with a disability, two in five are over age 65, and 2 in five represent minorities. The White House’s so-called “most favored nation” policy makes these groups the “least favored people” when it comes to our health care.
I urge the president and his Republican allies to stop assaulting civil rights. I urge voters to get informed about candidates’ positions on enforcing laws intended to protect people with disabilities. Spoiler alert: Former Vice President Joe Biden opposes the use of QALYs and rationing based on disability, committing instead to enforce civil rights and provide appropriate resources to protect and support our community in this crisis.
Let’s pass real relief to support people at highest risk in this pandemic to live safely in their homes and communities. Let’s provide stronger, not weaker, protections from imposed judgments about our quality of life and its value that cannot be trampled by presidential fiat. The threats we face during this pandemic are far too real.
Tony Coelho was a Democratic congressman from California from 1979 to 1989, a former House Majority whip, and an original author and sponsor of the Americans with Disabilities Act (ADA).
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