Op-ed: 'Most Favored Nation' pricing harms Oregonians with disabilities

By Jake Cornett, Executive Director, Disability Rights Oregon

We can all agree, prescription drug costs are simply too high for most Americans. Unfortunately, the administration's "Most Favored Nation" executive order on drug pricing misses the mark and could harm some Oregonians with disabilities in the long run.

The Most Favored Nation Executive Order would model the United States after foreign countries, some of which use quality-adjusted life years (QALYs)-based assessments. This is dangerous for people with disabilities.

In November, the National Council on Disability, an independent federal agency charged with making recommendations to the President and Congress, found QALYs place a lower value on the lives of people with chronic illnesses and disabilities. This approach leads to a devaluation of the lives of people with disabilities and perpetuates unequal access to medical care.

Among people with disabilities, "quality of life" equations often oversimplify the value a treatment would have on a person's life.

Ari Ne'eman, an official at the Office for Civil Rights at the U.S. Department of Health and Human Services, described how QALYs are used this way: "The QALY works by weighting the lives of people with disabilities. If we were to assign autism a disability weight of 0.2, that [number] would mean that a year in the life of an autistic person would be worth 80 percent of a nondisabled person's life." Different disabilities would get a different number, Ari explained. "If you assigned 0.5 to a mobility impairment, then a year in that person's life would equal 50 percent of a nondisabled life year."

This approach results in discrimination against people with disabilities and has no place in the United States.

Knowing that states and the federal government cannot police themselves on disability rights, Congress created a network of 57 agencies in every state and U.S. territory to provide legal protection and advocacy services for people with disabilities. Since 1977, Disability Rights Oregon has been empowered by the federal government as the statewide watchdog to protect the civil and human rights of 950,000 people with disabilities in Oregon.

If the federal government endorses the health systems of foreign countries that use discriminatory QALY-based assessment, the administration would be taking our country backward in protecting the rights of people with disabilities at a time when we're already experiencing additional discrimination in care.

During the COVID-19 pandemic, Disability Rights Oregon has received a stream of complaints of health care discrimination and bias from every corner of Oregon. As we investigated, in addition to battling a pandemic like everyone else, we found people with disabilities are also battling ingrained bias in the Oregon health care system.

Ross Ryan, a Mt. Angel resident with an intellectual disability who joined Disability Rights Oregon in sending a civil rights complaint to the Office for Civil Rights at the U.S. Department of Health and Human Services, said: "No one should have to worry about whether a doctor will listen to you or treat you when you are really sick just because you have a disability." Ross is right and his fears are shared.

While we've been told our lives don't have as much value as other Oregonians, we refuse to accept this discrimination. What we need from the state is leadership to make clear the lives of Oregonians with disabilities are equally valued and that discrimination will not be tolerated. What we need from the administration is affordable, safe medications, not a discriminatory framework that values the lives of some people over those with disabilities.