Insurer Denies Coverage for Duchenne Therapy, Leaving One Son to Suffer as the Other Thrives

As of September 8, 2025, 9-year-old Noah Joseph has made remarkable progress since receiving gene therapy for his Duchenne muscular dystrophy in March 2025. The treatment, approved by his insurance provider, has improved his mobility and quality of life, allowing him to learn to swim for the first time this summer.

However, his 10-year-old brother, Hunter, has not been as fortunate. In late May 2025, the family's application for Hunter to receive the same gene therapy was denied by their insurance company, Blue Cross Blue Shield, on the grounds that it was "not medically necessary." This decision has left the family devastated, as they watch Hunter's condition steadily decline while Noah thrives.

The parents, Alison and William, are now grappling with the impossible situation of having one son receive life-changing treatment while the other is denied. They have appealed the decision and reached out to state and federal representatives for assistance, but time is not on their side as Hunter's muscle degeneration accelerates.

The family's heartbreak is compounded by the fact that the insurance company had previously approved the treatment for Noah, leading them to believe Hunter would also be covered. Alison suspects the insurer may have quietly updated its policy to exclude the specific Duchenne mutation affecting her sons, though the company has not confirmed this.

With limited options and Hunter's condition worsening, the Josephs are determined to fight for their son's access to the potentially transformative gene therapy, which they believe is his best chance at a more comfortable life.