Cash Huber’s insurance petition pays off
It took less than a day for a petition to make a difference.
“Overnight it jumped to 20,000,” said Jena Huber, mother of a 6-year-old boy, Cash, who was diagnosed with Duchenne muscular dystrophy when he was 2.
Jena and her husband Phillip started the change.org petition after Highmark insurance three times denied approval of an experimental drug to treat Cash’s debilitating disease. Without treatment of Elevidys, a drug recently approved by the Food and Drug Administration for children ages 4-5, the family feared the worst. The disease attacks muscle, leaving those affected in a wheelchair, ending with an early death.
Starting with a few hundred signatures, community support swelled to more than 36,000 after an Aug. 22 Cape Gazette article ran sharing the Huber’s story with the beach community they have been a part of for decades.
Word got to the right person at Highmark. By Aug. 23, treatment for Cash was approved.
Huber said they got a personal call from the vice president of Highmark giving them the good news.
“It was a very good conversation,” she said. “Especially because he could see the impact that Cash’s story had on the community and how there was no good reason that he was not approved.”
Denee Crumrine of Highmark Health said the company cannot share information because they do not have authorization related to the Health Insurance Portability and Accountability Act.
The petition humanized Cash in a way that made a difference. “It made him stop and read Cash’s story and look at Cash as a whole person, instead of figures and numbers that he has to calculate or crunch,” Huber said.
Although Cash is now 6, Huber said Cash can get treatment because he was 5 at the time they started the approval process. Speaking from Children’s Hospital of Philadelphia Aug. 28, Huber said Cash was in for some testing, and they expect him to begin treatment in early September.
She can’t thank the beach community enough for its support.
“The restaurant industry and all the people that we’ve met have really been so supportive, and they were pumped to read about him,” she said. “It was really cool to have the community down there come together.”
Huber continues to work at Henlopen City Oyster House when she can; husband Phillip worked at the Rusty Rudder for more than a decade and then several years at Dogfish Head. The family lived in Rehoboth Beach until Cash was 2 – he was even born at Beebe Healthcare. Although they live in Wilmington now, Huber said, they still own property in Rehoboth, and friends and family continue to draw them to the area.
It’s been a difficult fight, Huber said, but she is hopeful, not only for her son, but also for other youngsters who need the treatment.
The change.org petition is still up, but now with a goal of 50,000 signatures.
“It should’ve been approved from the beginning. This isn’t something we should’ve had to work so hard for, but now if the medication is opened up for more kids, then it makes it all worth it,” Huber said.