(362) CF community experiences with self-funded employer insurance

Background: Self-funded, or self-insured, insurance plans are a type of employer insurance where an employer itself takes on the responsibility of paying employees’ and dependents’ medical claims. Unlike fully funded (or fully insured) employer insurance plans – where the employer pays a premium to an insurance carrier and is not responsible for medical claims – self-funded plans are not subject to state regulations. Self-funded insurance plans give employers control over what is and is not covered under their insurance. This study aims to understand coverage challenges experienced by people with CF (pwCF) covered under self-funded insurance.

Methods: This study was conducted using the Cystic Fibrosis Foundation's Compass case management data. Data were evaluated from January 1, 2020, through December 31, 2021. Cases were included if the person contacted Compass with a coverage challenge due to having self-funded insurance. Cases were excluded if Compass was unable to confirm the plan was self-funded, or they had self-funded insurance but the insurance was not the source of the coverage issue. Cases were deduplicated to ensure only one entry per person was included. Cases were then broken into categories based on the type of coverage issue and were analyzed based on impacted therapy or therapies, gaps in care, resolution, and employer demographics.

Results: 48 cases were included in this study. The self-funded employers ranged from 11 employees to over 465,000 employees and spanned 20 different states. 90% (43/48) of the cases were primarily related to a therapy not being included on their insurance formulary, 6% (3/48) of callers contacted Compass due to a co-pay accumulator, and 4% (2/48) of cases were related to both barriers. Of the formulary exclusion cases, 60% (27/45) were specifically due to the exclusion of elexacaftor/tezacaftor/ivacaftor. Other excluded drugs included other modulators (22%; 10/45) dornase alfa (9%; 4/45), pancreatic enzyme replacement therapies (11%; 5/45), aztreonam (4%; 2/45), and other CF-specific treatments (16%; 7/45). 24% (11/45) of formulary exclusion cases experienced challenges with multiple treatments. 53% (24/45) of formulary exclusion cases resulted in the caller obtaining access to their therapy, through either their self-funded insurance covering the therapy (20%; 9/45), changing insurance plans (16%; 7/45), successfully enrolling in manufacturer assistance (11%; 5/45), or other methods (7%; 3/45). Of the remaining 47% (21/45) of formulary exclusion calls, callers either did not respond to follow-up calls from the case manager (31%; 14/45) or were planning to wait until Open Enrollment to obtain new coverage and did not yet have access (16%; 7/45). 31% (14/45) of all formulary exclusion cases resulted in a person exploring or changing to alternative insurance options. 56% (27/48) of all callers experienced a known delay in care due to the issue they were calling about.

Conclusions: Self-funded insurance plans can cause significant coverage issues for the CF community that may result in gaps in care, lack of drug coverage, or the need to change insurance. Compass data can provide valuable information in understanding these coverage challenges. Future research should further study the scope and impact of self-funded coverage challenges for pwCF.

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