By Consumers For Quality Care, on April 29, 2019
Photo by Heidi de Marco/KHN
Krystal Hayden, the mother of 4-year-old Bentley, spent the recent holiday weekend worrying that this Easter may be his last, WKBW reports.
“My heart’s just shattered and I kind of feel, you know, everything is darkening. It’s not really like a celebration. It’s like this may be my last Easter with my son and I’m spending it fighting with insurance.”
Bentley is battling stage four neuroblastoma. He has undergone chemotherapy, but is not responding to the treatments. Recently, Bentley had spinal surgery to remove a growing tumor. Bentley’s physicians are now recommending that he undergo a new, potentially life-saving treatment.
“The treatment has never been done on pediatrics. It’s been done on like adult cancers,” she said. “His tumor tested positive for it so we submitted the paperwork for insurance.”
However, the Haydens’ insurer, Fidelis Care, denied the treatment. The insurance company says that it is not medically necessary. Fidelis Care’s denial letter stated that the treatment is experimental and added that Bentley does not have the type of tumor the treatment is traditionally used for.
“They’re saying that it’s just an experiment, and why waste the money if there’s no guarantee? But with cancer, nothing’s guaranteed,” said Krystal.
Without insurance coverage, the treatment would cost $85,000 per dose and Bentley’s doctors say he would need two doses. Krystal wants to do anything she can to give Bentley a shot at beating his cancer and surviving. She started a GoFundMe page to help raise money for the treatments.
In an update on the GoFundMe page, Krystal shared that, after public outcry, their insurance company reversed its decision and agreed to approve the treatment.