Gene therapy is transforming lives, but it’s proving elusive for many who need it to combat diseases. Dustin Vidrine, a 34-year-old Louisiana man, struggles with rare inherited eye disease retinitis pigmentosa due to limited access to specialized care. He had hope when his doctor suggested gene therapy could preserve his vision, but the journey has been complicated by lack of in-state options and restrictive insurance policies.
Gene therapies are usually one-time treatments that target disease-causing genes within cells. However, these innovative solutions come with a hefty price tag – sometimes exceeding $2 million per patient. This creates an insurmountable barrier for many who can benefit from these life-saving treatments.
In Vidrine’s case, he was initially denied gene therapy due to non-residency in Texas, where the treatment is available. Despite having a UnitedHealthcare insurance plan that covers out-of-network providers, his situation highlights the challenges of accessing specialized care across state lines.
A study by NPR found that Medicaid programs across the US have varying levels of coverage for gene therapies, with some states paying for more treatments than others. The lack of coordination between healthcare systems and insurance policies exacerbates the issue, leaving many patients without access to these life-changing treatments.
As companies like Aradigm work to address access disparities, there’s an urgent need to develop solutions that make gene therapy more widely available. Until then, patients like Vidrine will continue to face significant hurdles in accessing these groundbreaking treatments.
Source: https://www.npr.org/2026/02/24/nx-s1-5723768/gene-therapy-access