ALL Kids Helps Alabama Child Access Breakthrough Gene Therapy for Rare Genetic Hearing Loss

FOR IMMEDIATE RELEASE

CONTACT: Karen M. Landers, M.D., F.A.A.P.
(334) 206-5300

The Alabama Department of Public Health (ADPH) is celebrating a significant milestone for one Alabama family after a child enrolled in the ALL Kids program became eligible to receive a newly approved gene therapy for a rare form of inherited deafness.

The child has profound hearing loss caused by mutations in the OTOF gene and was among one of the first patients eligible to receive Otarmeni™ (lunsotogene parvec-cwha), approved by the U.S. Food and Drug Administration (FDA) as the first and only gene therapy for genetic hearing loss. The therapy was approved by the FDA in April 2026 and is designed to address the underlying genetic cause of hearing loss rather than simply treating its effects.

The procedure was performed at Boston Children's Hospital, one of the original clinical trial sites for the therapy. The treatment is administered during a same-day surgical procedure.

"At ADPH, the mission of our ALL Kids program is to ensure Alabama's children have access to the care they need, including highly specialized treatments that may not be available close to home," said Dr. Karen Landers, Chief Medical Officer. "We are grateful this child has the opportunity to receive a therapy that offers new hope for children and families affected by this rare genetic condition."

The manufacturer, Regeneron Pharmaceuticals, has announced it will provide the gene therapy at no cost to clinically eligible patients in the United States. Families may still be responsible for costs associated with the procedure and related medical care, depending on their insurance coverage.

ALL Kids, Alabama's Children's Health Insurance Program (CHIP), is administered by ADPH and provides quality, affordable healthcare coverage for eligible children throughout the state. Through its longstanding partnership with Blue Cross and Blue Shield of Alabama, ALL Kids connects families to a broad network of healthcare providers, ensuring children have access to preventive care, specialty services, and medically necessary treatments that support healthy growth and development. ALL Kids is proud to partner with Blue Cross in advancing the health and well-being of Alabama's children and helping families access the care they need.

The Alabama Early Hearing Detection and Intervention Program collaborates with the Alabama Care Coordination Program to ensure that all infants with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. In addition, the program collaborates with the Alabama Early Intervention System (AEIS) to ensure all infants with hearing loss are identified by three months of age and enrolled in AEIS before six months of age.

"This milestone demonstrates the importance of ensuring children have access to innovative medical care as new therapies become available," said Dr. Landers. "Through a shared commitment between the ADPH and Blue Cross and Blue Shield of Alabama, we are proud that ALL Kids can help Alabama families access life-changing treatment options when medically appropriate. ADPH is grateful to the entire team at Boston Children's and its Department of Otolaryngology and Communication Enhancement for caring for this patient and others who will benefit in the future."

For more information about the ALL Kids program, visit ALL Kids, and for information about the Alabama Newborn Hearing Program, visit Newborn Hearing Screening.

For more information about Boston Children's hearing loss therapy program, visit Boston Children's Hospital, and for more information about Boston Children's research in genetic hearing loss, see this video on pediatric hearing loss.

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8/17/26

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