Alabama Child Receives Breakthrough Gene Therapy for Rare Hearing Loss

MONTGOMERY– An Alabama child has received gene therapy for rare inherited hearing loss through the state’s ALL Kids program.

The Alabama Department of Public Health announced the milestone Monday. According to the agency, mutations in the OTOF gene caused the child’s profound hearing loss.

Treatment Targets Genetic Cause

The child received Otarmeni, or lunsotogene parvec-cwha. The U.S. Food and Drug Administration approved the treatment in April 2026.

That approval made Otarmeni the first gene therapy for genetic hearing loss. Rather than only easing its effects, the treatment targets the genetic cause.

Boston Hospital Provides Treatment

Doctors at Boston Children’s Hospital gave the child the treatment during a same-day surgery. Also, the hospital hosted one of the therapy’s original clinical trials.

Meanwhile, ADPH said the child was among the first eligible patients. Chief Medical Officer Dr. Karen Landers said ALL Kids helps children reach specialized care.

In addition, the program can help families find care outside Alabama when needed. Landers said the therapy offers “new hope for children and families affected by this rare genetic condition.”

Manufacturer Offers Therapy at No Cost

Regeneron Pharmaceuticals will provide the therapy at no cost to eligible patients in the United States. However, families could still owe costs for the procedure and related care.

ALL Kids serves as Alabama’s Children’s Health Insurance Program. ADPH manages the program with Blue Cross and Blue Shield of Alabama.

Together, the organizations connect families with preventive care, specialists, and other needed treatment. Moreover, the program offers affordable coverage to eligible children across Alabama.

Early Hearing Care Remains Important

At the same time, ADPH continues working to find hearing loss as early as possible. Its hearing program works with state care coordinators and early intervention services.

The state aims to identify hearing loss by three months of age. Then, families can enroll eligible infants in early intervention before six months.

Early care can connect families with hearing tests, education, and medical treatment. Finally, families can find more information through the Alabama Newborn Hearing Program.

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