On September 20, 2023, the Massachusetts Joint Committee on Health Care Financing considered legislation, H. 1183 and S. 730, that would prohibit reliance on discriminatory measures, including quality-adjusted life years (QALYs) to determine whether a particular health care treatment is cost effective, recommended, the value of a treatment, or in determining coverage, reimbursement, appropriate payment amounts, cost-sharing, or incentive policies or programs.
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 ADA in 1992 when rejecting Oregon’s original waiver application due to its reliance on QALYs to value and prioritize health care.
Since then, the Affordable Care Act explicitly barred the use of QALYs and similar measures in Medicare.
Recently, the Inflation Reduction Act included language barring the use of evidence that devalues patients and people with disabilities in its considerations about the value of prescription drugs.
And the administration recognized in a recent proposed rule how value assessment of health care that devalues disabled lives may be used to restrict coverage for people with disabilities, in violation of Section 504 of the Rehabilitation Act.
I question why we are still having this discussion.
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. I have since made it my life’s mission to fight discrimination against people with disabilities in our country.
You may hear from individuals like Steve Pearson, the President of the Institute for Clinical and Economic Review, an entity that calls QALYs the “gold standard.” He claims the measures used by ICER are not discriminatory, but I urge you to look at the credible body of evidence that measures like QALYs do discriminate. We have a 30-year track record of public opposition to QALYs and similar measures. Research from the National Council on Disability, an independent federal agency advising on disability policy, found that the use of the QALY is discriminatory and recommended that policy makers and insurers reject its use.
I authored the ADA to counter disability bias and stigma for future generations. Combined with existing laws including the Affordable Care Act, the Inflation Reduction Act and Section 504 of the Rehab Act, there is no question that metrics like QALYs are not fit for use in our health system.
I urge your full support of H. 1183 and S. 730 to ensure that Massachusetts is not discriminating against its citizens with disabilities through the use of the QALY and measures like it. I would also like to note my support for H. 1180 and S. 753, which would enact other important protections for people with disabilities.
Thank you for allowing me to speak