Fifteen-year-old Alexis McRae and her family were on a long, arduous journey as the girl battled cancer when things went wrong somehow: They were about to lose her health care coverage.
Alexis, who goes by Lexi, has been battling cancer for the past four years. A Columbus, Georgia, family was devastated when they received a letter with unimaginable news: A Medicaid waiver for children with life-threatening illnesses had been denied renewal without explanation, her mother, Katie McRae, told USA TODAY on Friday.
The letter gave vague instructions on how to request an appeal and there is no way to check the status of that request. McRae said the phone number would direct her to another number, which could lead to a phone call — an overwhelming cycle with no clear path on how to get answers.
“The frustration can’t even be described. When you have a medically fragile child who needs something and you literally can’t give it to them, it’s the most helpless feeling ever,” McCray said. “Because there is something you can do…but you are stuck in a trap and a cycle and there is nothing new you can do on your end.”
Less than an hour before the final rejection, what seemed like a miracle happened: With the help of the Raleigh Foundation for Children’s Cancer Research, the family was able to attract the attention of Republican Governor Brian Kemp, who helped get Lexi back in lockdown. With only minutes to spare.
“It was literally up to the clock,” McRae said.
Lexi wrote and read a letter to Governor Brian Kemp
Lexi met Kemp last year when she served as a child representative when Georgia declared September as Childhood Cancer Awareness Month. McRae said Lexi shared her story of being diagnosed with osteosarcoma and seeking treatment with the governor and read him a letter she wrote to him.
“Chemotherapy is the worst,” Lexie wrote when she was 14. “Being in the hospital for 3 to 5 days sometimes makes you feel sick and nauseous but also lonely and isolated.” “I missed a lot of school not because of the cancer but because of it.” A side effect of treatment.”
McRae said she believes the experience “put a face on her” and may have inspired Kemp to help the family.
“It wasn’t just a name and a number. It was someone he met and embraced and a child he got to see, so I feel like in a lot of ways it made it more real for him.” McRae said. “His stepping up was life-saving because he knew this was not a politically motivated move. This was just another human being who saw he could do something good, stepped in and did something good.”
Lexi’s treatment is her last option
Lexi began treatment again on Wednesday, according to her mother. McRae said it will take three to four weeks to see if the treatment slows the progression of her daughter’s disease.
Lexi was diagnosed with bone cancer in her right humerus in October 2019. She endured chemotherapy, multiple medications and several surgeries, including replacing the humerus with donor cadaver bone. She remained cancer-free for eight months before it returned to her lungs five times.
In December 2022, Lexi’s cancer had metastasized to her lungs, leg bones, hips and spine, resulting in another six months of chemotherapy and three failed clinical trials. McRae said her current treatment is her last option.
“She’s an incredibly strong, determined young lady. She doesn’t complain about things when things are tough, and she’s been through a lot of tough things in her life,” McRae said.
McCray is so proud of her daughter for fighting for herself and bringing awareness to other kids with cancer. Although she has moments of despair, Lexie rarely allows herself to be consumed by her illness, her mother said.
‘Many families didn’t get it’
Dean Crowe, founder and CEO of the Rally Foundation that helped bring Lexie’s case to Kemp’s attention, remembers the moment the teen’s insurance was renewed. Crowe said she wanted to help Lexie because she knew her personally as a “fighter.”
“If Lexi wanted to fight, I would have done it and Raleigh would have done everything we could to give her a chance to fight,” Crowe said. “We all cried because we were so happy that Lexi got it. But we also cried because we knew there were a lot of families that didn’t get it, and four o’clock came and they didn’t get it.”
But, she says, “Hopefully we’re in a position to have a very open conversation with that.”
“And I think we’re listening to the governor who saw this as a really terrible situation,” she continued.