On October 6, PIPC Chair Tony Coelho testified in response to the Oregon Health Evidence Review Committee's proposed options for continuing its use of the discriminatory quality-adjusted-life-years metric.
I appreciate the opportunity to speak about your proposed options for using quality-adjusted life years or QALYs in decisions related to Oregon’s prioritized list of services.
When I authored the Americans with Disabilities Act during my time in Congress, I intended it to drive inclusion of people with disabilities and equal access to care.
I was pleased to see HHS reference the law in 1992 when rejecting Oregon’s original waiver application due to its reliance on QALYs to value and prioritize health care.
30 years later, I question why we are still having this discussion. Oregon had 30 years to find new - nondiscriminatory - strategies for prioritizing its Medicaid list of services.
Looking at the options in front of you, I hope we can immediately take Options 2 and 3 off the table. Deleting mention of QALYs – while still using QALYs – is NOT a solution. In fact, those options only hide their use from the public and foster distrust.
Related to Option 1, the use of discriminatory metrics does not serve a purpose.
While the best is Option 4, I urge the commission to stop using QALYs altogether.
Yet, this commission is still debating strategies to rely on flawed – discriminatory – evidence that fails to value or even include people with disabilities and communities of color – creating “winners and losers” where some people get care and others do not.
This cannot help you achieve the state’s health equity goals. Those omitted from evidence or devalued by it will then face discriminatory benefit designs and denied coverage.
Being part of the solution – instead of the problem – means ending use of evidence that feeds bias and inequity in health care.
As a person with epilepsy, I understand stigma. As a young man, my condition meant I could not get a job, the Catholic church thought I was possessed by the devil, and my parents stood by the church – not me.
The ADA was enacted to counter that bias and stigma for future generations. Combined with Section 504 of the Rehab Act and Section 1557 of the Affordable Care Act, there is no question that metrics like QALYs are not fit for use in our health system.
I urge this commission to do the right thing and end its use of QALYs. Thank you for allowing me to speak.