Opinion: Gene Therapy Should Not Be a Luxury

Imagine telling a child with sickle cell disease that a cure exists—but it’s too expensive for their insurer to cover. That’s not a hypothetical. It’s the reality of gene therapy today: a revolutionary medical breakthrough caught in the bottleneck of American healthcare economics.

Gene therapy is no longer science fiction. It’s curing diseases once considered lifelong or fatal. But instead of ushering in a new era of medicine, these treatments are crashing into old models of insurance and reimbursement—and patients are paying the price. Treatments like Zolgensma for spinal muscular atrophy ($2.1M) and Hemgenix for hemophilia B ($3.5M) are among the world’s most expensive drugs, and gene therapy spending in the U.S. is projected to average $20.4 billion annually over the next decade, split between private insurers, Medicare and Medicaid.

Despite FDA approvals, uptake remains limited—as of last fall, only about 100 patients globally had received newly approved sickle-cell gene therapies, largely due to insurer hesitancy, high out-of-pocket costs and complex prior authorization hurdles. While some payers have begun crafting installment or outcomes-based agreements, coverage remains patchy and often excludes...