Cell and gene therapies now carry price tags that routinely run into the millions of dollars per patient. Casgevy, the first CRISPR-based gene therapy, launched at a wholesale acquisition cost of $2.2 million, according to Vertex Pharmaceuticals. A commentary published in the May 2026 issue of the American Journal of Managed Care argues that the bigger problem is not the price itself, but the co-payment structures sitting between eligible patients and treatment. The authors - William H. Shrank, Ellen Kelsay, and A. Mark Fendrick - contend that traditional cost-sharing was designed for a different world, and that applying it to one-time curative therapies doesn’t control utilization. It just blocks access.
Shrank, who is CEO of Aradigm Health, a benefits platform for cell and gene therapies, and Fendrick, who consults for a range of health industry entities, have commercial ties to the space they are commenting on. Those disclosures are published in full in the journal. The argument, however, rests on peer-reviewed evidence, and it lands in territory that employer plan sponsors and their advisors are already navigating.
Patient cost sharing is traditionally used to discourage low-value utilization. The assumption is that people will seek out care they don’t need if it costs them nothing, and that a financial stake in the decision keeps consumption rational. That logic breaks down, the commentary argues, when the treatment in question is a one-time, physician-administered therapy delivered at a handful of specialized centers to patients who meet strict clinical criteria. There is no scenario in which a patient “overuses” a gene therapy. Once the eligibility bar is cleared, the out-of-pocket obligation stops functioning as a value signal and starts functioning as a barrier.
For commercially insured patients and those on Medicare Advantage, deductibles and coinsurance can quickly push total out-of-pocket costs to plan maximums, not counting travel, caregiving, and time off work. The commentary notes that these costs frequently lead to medical debt, personal bankruptcy, or abandonment of treatment. Those outcomes carry their own long-term costs for the health system and for the employer plan still covering that member.
A June 2026 national inpatient analysis titled Insurance and racial disparities in CAR-T cell therapy outcomes: A national inpatient analysis, led by Jeril Lasington, MBBS, MS, of New York Medical College, found significant insurance-based and racial gaps in both access to and outcomes from the treatment. The authors described it as the first comprehensive national analysis of its kind (AJMC, June 2026). Research on CAR-T utilization cited in the commentary similarly shows that patients treated at well-resourced academic centers, with generous employer-sponsored coverage and care navigation support, are far more likely to receive these therapies than those without.
Cell and gene therapy utilization in employer-sponsored health plans sat at 9.2 per 100,000 covered lives in 2022, the most recent year analyzed, according to the Employee Benefit Research Institute (EBRI). Use remains rare but is rising, with costs concentrated among a small subset of high-cost claimants. The standard cost-sharing apparatus was calibrated for a different kind of utilization pattern, and it offers little protection against a $3 million claim while creating genuine harm at the patient level.
The commentary proposes replacing co-payments in this category with outcomes-based participation. Specifically, it calls for requiring patient enrollment in longitudinal outcomes registries as a condition of coverage, rather than charging out-of-pocket costs. That model is already in motion at the federal level. The CMS Cell and Gene Therapy Access Model ties payment to clinical outcomes and links coverage to participation in outcomes monitoring infrastructure, establishing a framework that private payers are watching closely.
The employer market is moving in a parallel direction. Amwins Group Benefits recently expanded its Gene Therapy Solutions program to cover 15 cell and gene therapies, up from five, through a structure designed to give self-funded employers sustainable access to high-cost treatments without catastrophic exposure.
Those conversations are happening against a backdrop of tightening stop-loss conditions. Cancer claims and specialty drugs are driving stop-loss cost increases across the employer market. The FDA had approved approximately 46 therapies as of 2025, according to EBRI, with dozens more in the pipeline, and plan sponsors face a growing window in which today’s benefit design choices will determine tomorrow’s access gaps.
The commentary concludes that value-based insurance design should be an explicit goal for this category, one that would, in the authors’ view, lead to the elimination of co-payments for high-value cell and gene therapies in specific, clinically defined scenarios, with access guided by probability of benefit rather than ability to pay.