Family fights for drug treatment for son

A young boy and his family are fighting the clock and their insurance company for a drug treatment to stop the boy’s debilitating disease.

“This medication will save his life,” said Jena Huber, whose 6-year-old son Cash was diagnosed with Duchenne muscular dystrophy when he was 2.

The disease attacks muscle, leaving those diagnosed in a wheelchair, tragically ending with an early death.

Since his fateful diagnosis, the dark-haired boy with doe eyes has lived a life in and out of doctor’s offices and healthcare institutions – the latest being Children’s Hospital of Philadelphia.

Earlier this year, Huber said, the federal Food and Drug Administration approved an experimental gene therapy called Elevidys to treat DMD. The drug was approved for children ages 4-5, and CHOP completed all the screening for Cash, who was 5 at the time. 

“He was ready to go,” said Huber.

But the family’s health insurance company, Highmark Blue Cross Blue Shield, has three times refused to authorize treatment, Huber said, despite an appeal from Cash’s doctor.

“There’s no reason why our son should not get the treatment,” she said.

Now 6, Cash can still get treatment if approved by the insurance company because the process started when he was 5, Huber said.

Huber and her husband Phillip, who both have worked and lived in the Rehoboth Beach area and have family in the area, have put up a petition on change.org asking Highmark’s top executives to approve the experimental treatment for Cash. Their goal is 2,500 signatures, and so far about 2,100 have signed.

“The people from Highmark tagged in the petition could overturn the past rejections,” Huber said.

The petition at www.change.org was created by Phillip Huber and is titled “Highmark Delaware: Approve This Life-Changing, FDA Approved Treatment For My Son.”