Not Dead Yet is deeply concerned by the New York Legislature’s failure to protect people with disabilities from discrimination in the budget passed this week. Despite widespread criticism from the disability community, the Legislature incorporated language in the budget authorizing the state to use third party assessments, including those relying on the discriminatory and harmful Quality Adjusted Life Year (QALY), to limit access to prescription drugs for individuals on Medicaid.
Not Dead Yet has long opposed the use of the Quality Adjusted Life Year, which calculates the value of disabled life as a percentage of the value of the life of a non-disabled person. QALYs were firmly rejected in 1992 when the State of Oregon was denied permission to use QALY assessments in their Medicaid program due to the newly passed Americans with Disabilities Act. The Affordable Care Act prohibited the use of QALYs in the Medicare program and in the Patient-Centered Outcomes Research Institute (PCORI). Unfortunately, the state seeks to circumvent these restrictions by relying on third-party QALY assessments conducted by the Institute for Clinical and Economic Review (ICER), an organization that conducts QALY assessments on each new drug brought to market.
New York’s Medicaid Drug Cap empowers the state to restrict access to medications that exceed the cost assessed as reasonable by the state’s Drug Utilization Review Board. This poses a serious concern for people with disabilities, who often depend on such medication in order to survive and thrive. Already, the Drug Utilization Review Board has used QALY assessments in their assessment of Orkambi, a crucial medication for people with cystic fibrosis.
While we support measures to reduce the price of prescription drugs, we do not believe that people with disabilities and chronic conditions should be held hostage in negotiations between pharmaceutical companies and insurers, be they public or private. In addition, we firmly reject any role for the QALY in assessing the value of the medications that many in our community rely on as a matter of life or death.
Not Dead Yet urges state policymakers in New York and across the country to reconsider this ill-advised approach to value assessment and to prohibit the use of Quality Adjusted Life Years in state decisions around coverage, access, incentives and reimbursement. This prohibition should be broad based, applying both to direct state decisions and the use of third-party assessments that rely on QALYs.
People with disabilities deserve better than discriminatory and harmful restrictions rooted in an outdated and offensive idea that our lives are worth less than those of the general population. Not Dead Yet urges policymakers and advocates to act to address this grave risk to our community.