Overview

• The Department of Health and Human Services (HHS) announced a pilot program enabling the National Institutes of Health (NIH) to access de-identified Medicare and Medicaid data for autism research.
• The initiative aims to explore autism diagnosis trends, intervention outcomes, healthcare access disparities, and the economic burden on families and systems.
• HHS emphasizes compliance with privacy laws, but advocates and experts express concerns over potential misuse, data security, and the dataset's limitations for identifying autism's causes.
• Illinois Governor J.B. Pritzker signed an executive order restricting the collection and sharing of autism-related data by state agencies, citing privacy and discrimination concerns.
• Researchers and advocacy groups continue to question the program's focus and feasibility, highlighting the absence of critical genetic and environmental data in Medicare and Medicaid records.