A May 2026 commentary says patient cost sharing barely dents spending on one-time cures, and plan sponsors have alternatives
Employer plans that charge deductibles and coinsurance on one-time gene therapies may be blocking patients without trimming the bill, according to a commentary in the May 2026 issue of the American Journal of Managed Care (AJMC).
The authors, William Shrank, Ellen Kelsay and A. Mark Fendrick, say patient cost sharing is a small share of total cell and gene therapy spending. Deductibles and coinsurance can still leave families owing thousands of dollars. They put a direct question to plan designers: “What purpose does cost sharing serve in this category of care?”
The commentary is an argument, not a study of employer outcomes. Shrank is chief executive of Aradigm, a company that manages the clinical and financial risk of cell and gene therapies. Insurance Business reported that Fendrick consults for health industry entities.
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.
Where employers can move
Self-funded sponsors control plan design and can change cost sharing for a defined list of therapies. Employers on fully insured plans need the carrier to move first, so the question belongs in the next renewal conversation.
EBRI cautions that many cost-management strategies for these therapies remain largely unproven at scale.
