A new study out of the United States finds that while cell and gene therapies remain rare in employer health plans, their use is climbing — and even a single claim can deliver a major financial hit to smaller organizations.
The Employee Benefit Research Institute released research Feb. 19 analyzing claims data to examine how these high-cost treatments are affecting employment-based health insurance. The findings carry direct implications for HR leaders managing benefit design and cost strategy.
Use is low but growing
In 2018, 7.9 per 100,000 enrollees received a cell or gene therapy. By 2022, that figure rose to 9.2 per 100,000, according to the report. While still uncommon, the U.S. Food and Drug Administration had approved 48 such therapies as of 2025, with more in development.
A growing number of those therapies target conditions more common than traditional rare diseases, which the institute says could widen financial exposure for employers in coming years.
Costs concentrated among a small group
Cell and gene therapy users make up fewer than 0.1 per cent of the enrolled population but account for approximately 0.5 per cent of total health spending, including costs for related health services. That share has remained relatively stable from 2018 to 2022.
Among enrollees in the top one per cent of health care spenders, 0.58 per cent used these therapies — but they accounted for 1.6 per cent of spending within that group. The institute says this signals that cell and gene therapies can meaningfully affect spending patterns among the highest-cost claimants.
Employer size shapes risk exposure
The institute notes that traditional cost-sharing tools such as deductibles and out-of-pocket maximums have limited influence on utilization among high-cost claimants receiving these therapies.
Larger self-insured employers can spread risk across a bigger covered population. Smaller employers are more vulnerable and often turn to stop-loss insurance, though the institute cautions that approach can carry limitations, including exclusions for individuals already identified as high-cost. For a small self-insured employer, even one $1-million claim can represent a double-digit share of annual health spending.
Strategies being explored
Employers and insurers are examining several approaches to manage financial exposure from these therapies, according to the report. These include stop-loss insurance, carve-out programs, gene therapy reinsurance, value-based payment arrangements, performance-based contracts and amortization.
The institute notes that many of these strategies remain largely unproven at scale for cell and gene therapies, making ongoing evaluation essential.
“Cell and gene therapies remain uncommon in employment-based plans today, but the trajectory matters,” said Paul Fronstin, director of health benefits research at the Employee Benefit Research Institute. “Our analysis shows utilization rising gradually and spending concentrated among a small share of high-cost claimants — signals that employers, insurers, and policymakers should begin testing financing and payment models now to preserve access while managing risk as the CGT pipeline expands.”
The Employee Benefit Research Institute is a nonprofit, independent research organization focused on employee benefit programs in the United States.
