The Effect of a Pediatric Rare Disease on Subscriber Retention Rates for Commercial Health Insurers in the United States

BACKGROUND: The advent of personalized medicine creates opportunities for regenerative therapies to deliver extended clinical benefit from a single administration. Policymakers and health insurers in the United States are evaluating coverage and payment arrangements for these therapies. One challenge involved in these evaluations is the perception that subscribers change insurers relatively often. However, the effect of pediatric rare diseases on retention rates for commercial health insurers has not been well studied. OBJECTIVE: To develop estimates for subscriber retention by a commercial insurer for up to 10 years. METHODS: Three population cohorts were examined: (1) all subscribers, (2) subscribers with any dependent aged 16 years or younger, and (3) subscribers with any dependent aged 16 years or younger diagnosed with a chronic rare disease that typically results in a debilitating state or high mortality, usually associated with high health care costs regardless of whether a treatment is available. ...