A Georgia family was about to lose insurance for teen's cancer battle. Then they got help.
Fifteen-year-old Alexis McRae and her family were already on a long, grueling journey as the girl battled cancer when things somehow got worse: they were on the verge of losing her healthcare coverage.
Alexis, who goes by Lexy, has been battling cancer for the past four years. Her mother, Katy McRae, told USA TODAY on Friday that the Columbus, Georgia, family was devastated when they got a letter with unthinkable news: their renewal of a Medicaid waiver for children with life-threatening illnesses had been denied without explanation.
The letter gave vague instructions on how to request an appeal and no way to check the status of that request. McRae said a phone number would direct her to another number, which would lead to a phone call – a crushing cycle without a clear path on how to get answers.
"Frustration would not even begin to describe it. When you have a child who is medically frail and needs something and you literally cannot give it to them, it is the the absolutely most helpless feeling," McRae said. "Because there is something that you could be doing ... but you're caught in a trap and a cycle and there's nothing new on your end that you can do."
With less than an hour before the denial was final, what seemed like a miracle happened: With the help of the Rally Foundation for Childhood Cancer Research, the family was able to catch the attention of Republican Gov. Brian Kemp, who helped reinstate Lexy's insurance with only minutes to spare.
"It literally was down to the hour," McRae said.
Lexy wrote and read a letter to Gov. Brian Kemp
Lexy met Kemp last year when she served as a childhood representative when Georgia proclaimed September as childhood cancer awareness month. McRae said Lexy shared her story of being diagnosed with osteosarcoma and seeking treatment with the governor and read him a letter that she had written to him.
"Chemo is the worst. Being in the hospital 3-5 days sometimes more feeling sick (and) nauseous but also lonely and isolated," Lexy wrote when she was 14. "I've missed so much school not because of cancer but because of the side effects of treatment."
McRae said she believes that experience "put a face to her" and may have inspired Kemp to help the family.
"It wasn't just a name and a number. It was a person that he had met and hugged and a child that he got to see and so in a lot of ways, I feel like it made it more real for him," McRae said. "Having him step up, it was life-saving for having and knowing that this wasn't a politically motivated move. This was just another human being who saw that he could do something good stepped in and did something good."
Lexy's treatment is her last option
Lexy started treatment again on Wednesday, according to her mother. McRae said it will take three to four weeks to see if the treatment is slowing down the progression of her daughter's disease.
Lexy was diagnosed with the bone cancer in her right humerus in October 2019. She's endured chemotherapy, multiple drugs and several surgeries, including one replacing her humerus with a donated cadaver bone. For eight months she was cancer-free before it returned five times in her lungs.
In December 2022, Lexy's cancer drastically reached her lungs, bones of her legs, hips and spine, which led to another six months of chemotherapy and three failed clinical trails. McRae said her current treatment is her last option.
"She's an incredibly strong and determined young lady. She doesn't complain about things when things are hard, and she's had a lot of hard things in her life," McRae said.
McRae is immensely proud of her daughter for fighting for herself and to bring awareness to other kids with cancer. While she rightfully has moments of despair, Lexy rarely allows herself to be consumed by her disease, her mom said.
'So many families that didn't get it'
Dean Crowe, founder and CEO of the Rally Foundation that helped get Kemp's attention on Lexy's case, recalls the moment the teen's insurance was renewed. Crowe said she wanted to help Lexy because she knew her personally as a "fighter."
"If Lexy wanted to fight then I was going to do and Rally was going to do whatever we could to give her that opportunity 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 so many families that didn't get it, that 4 o'clock came and they didn't get it."
But, she says, hopefully "we are in a position to have a very open conversation with that."
She continued: "And I think that we have the ear of the governor, who saw that this was really a dire situation."