The patient and disability community has long had concerns about the use of QALYs to determine cost effectiveness or “value” of treatments, and, historically, the QALY has been opposed for use in decision-making by the American public and policy makers. In fact, there is currently a ban on use of the QALY or similar metrics in Medicare, and, in 1992, a Republican administration established that use of a cost-effectiveness standard by a state Medicaid program would violate the Americans with Disabilities Act. Groups representing patients and people with disabilities shared this concern clearly to HPC and are disheartened they did not put protecting patients first and include a QALY ban in the regulation.
While we appreciate the expanded provisions requiring transparency and consideration of outcomes that matter to patients, without an explicit QALY ban, this approach fails to provide them with meaningful and needed protections. We will continue in our fight to ensure that both state and federal policymakers recognize that all lives, including those of patients and persons with disabilities, have equal value.