Member Retention Rates May Inform Payment Plans for Beneficiaries With Rare Diseases

Beneficiaries with rare diseases have higher retention rates than those without in commercial insurance programs, so payers may need to account for data regarding rare diseases when establishing multiyear payment arrangements for genetic therapies, a new analysis suggests.

“Costs have historically been recognized when the service or treatment is administered, resulting in the potential for the cost associated with the possible long-term clinical benefit of cell and gene therapies being incurred during a short administration period,” researchers of the study explained. “Innovative payment arrangements have been proposed to improve the synchronization of the payment and the emergence of the clinical benefit.”

Study authors conducted an analysis of 4 population cohorts to determine estimates for member retention among adults with certain rare diseases: (1) self-insured/all subscribers; (2) self-insured/rare medical condition; (3) fully insured/all subscribers; and (4) fully insured/rare medical condition. The seven prospectively selected rare diseases included cerebral palsy, cystic fibrosis, Gaucher disease, hemophilia, sickle cell disease, spina bifida, and thalassemia. 

Researchers used the IBM MarketScan Commercial Claims and Encounters database to gather information on adult subscribers or their partners for a 10-year period ending in 2016. Retention rates were estimated using the Kaplan-Meier method. Study was limited to include subscribers and subscribers spouses aged 18 years and older, excluding dependents.  

According to the results, the member retention rate among those with rare conditions was significantly higher than the all-subscribers cohort in both self- and fully-insured cohorts by at least 12 points at each 1-year period. After 5 years, approximately 20% more of the rare disease cohort was retained than all subscribers. Members with each condition also had a statistically significant higher probability of retention regardless of payer type.

The authors noted that member retention is a key component of multiyear payments for treatments, alongside efficacy, durability of effect, and mortality. 

“Health insurers and plan administrators may have inaccurate expectations if standard assumptions based on all member populations are used,” concluded the researchers. “This study found that adults diagnosed with 1 of 7 rare medical conditions are retained longer, on average, than all adult subscribers.”

Reference:
Jackson EA, Runyan B, Mets L, Kenney J. An analysis of member retention patterns for adult rare disease cohorts to support evaluating multiyear payment arrangements for novel therapies. J Manag Care Spec Pharm. 2021;27(6):753-759. doi:10.18553/jmcp.2021.27.6.753