An Independent Federal Agency Recognizes the Threat of QALYs and Reference to International Prices That Rely on Them: A Summary of the NCD Report
The National Council on Disability (NCD)’s report to President Donald Trump on Quality-Adjusted Life Years and the Devaluation of Life with a Disability provides a timely understanding and perspective of the implications of QALYs. This report will be an essential tool for advocates, coming from an independent, nonpartisan federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
The Institute for Clinical and Economic Review (ICER) recently assessed two treatments for spinal muscular atrophy (SMA), a rare and deadly genetic condition impacting 1 in 11,000 newborns each year. In the absence of therapy intervention, death or the need for constant ventilation to breathe before the age of two years is the outcome for more than 90% of individuals diagnosed with SMA Type 1. SMA is the number one genetic cause of death for infants.
The Data Mine: Tufts University Study Highlights Failure of Cost Effectiveness Analysis to Account for Variability Among Patients