Gene therapy co-pays block access but save little, authors argue

Cost sharing does little at seven figures

The Employee Benefit Research Institute (EBRI) found that standard cost-sharing mechanisms have little effect on use of therapies that can top $1 million per treatment. Use is still rare. EBRI reported that 9.2 per 100,000 enrollees in employer plans received a cell or gene therapy in 2022, up from 7.9 in 2018. Benefits broker Lockton put incidence among its clients at 6.25 gene therapy cases and 15 cell therapy cases per million lives.

The exposure is lumpy. For some smaller plans, EBRI said, one seven-figure claim could equal a double-digit share of annual health spending. Those employers often lean on stop-loss insurance, which EBRI notes can exclude known high-cost individuals.

Drug budgets are already stretched, with specialty drug use outpacing rebate savings for self-funded employers heading into 2027 renewals. Marsh projects employer health costs rising 8.2 percent per employee in 2027, the steepest increase since 2003. Some sponsors are also moving pharmacy benefit business away from the three largest managers.

What the authors propose instead

The commentary calls for dropping patient cost sharing on these therapies and requiring long-term participation in an outcomes registry as a condition of coverage. The Centers for Medicare & Medicaid Services (CMS) Cell and Gene Therapy Access Model already ties payment to clinical outcomes and links coverage to outcomes monitoring. Private payers are watching it.

On the employer side, Insurance Business reported that Amwins Group Benefits recently expanded its Gene Therapy Solutions program to 15 therapies, up from five, for self-funded plans.