Maddison Mertz, a 7-year-old from Victoria, Minnesota, loves gymnastics, her family, and hanging out with her friends. In late 2016, the little girl was experiencing headaches, a stiff neck, tingling in her right arm, and vomiting. An examination from her family doctor gave her parents, Zack and Lindsay, the devastating news: Maddison had a tumor inside her spinal cord and was diagnosed with Stage IV cancer.
Their fight began immediately. Surgery removed 95 percent of Maddison’s tumor before she underwent radiation. Now, she needs targeted chemotherapy drugs that could potentially help her further. According to Maddison’s doctors, this type of cancer is aggressive, and could return some six to 12 months after radiation.
And that is where the Mertz family’s new battle begins.
As Maddison’s father Zach Mertz told CBS affiliate WCCO:
“At first I thought it will get approved because things get approved and the hospital was taking care of it and the first one was denied. And OK we’ll go through a second denial. And the second was denied and they used a word: investigational.”
Their child is now fighting for her life and is being denied potentially lifesaving medicine because, as Mertz tells Babble, “the drugs that match her type of cancer and are FDA-approved will not work on her.”
There are, however, targeted chemotherapy drugs doctors believe could help Maddison. Glioblastoma multiforme, Maddison’s form of cancer, is extremely rare in kids. Genetic testing has shown what has worked in the past for some adults won’t work for Maddison. Each tumor has different characteristics and the approved drug will not work for Maddison’s specific tumor. However, genetic testing has show that the drugs being denied would indeed target her tumor.
“Maddison, she doesn’t have the cards in her favor,” Mertz says. “She’s 7. She’s a pediatric patient. All the studies are in adults.”
Dr. Bendel at Children’s Hospital and Clinics Minnesota is doing everything they can to give her more time. As Bendel told WCCO:
“One would be to say OK we do surgery, radiation and then and that’s all we have to offer. The other option is to say maybe there’s something out there that will work that we don’t have the proof that it will work but at least it gives us hope.”
The hope is that the chemo drugs will improve the odds of preventing the cancer from returning. But they don’t come cheap: the chemo drugs Maddison needs cost $20,000 a month, because the Mertz family’s insurance is continuing to deny their coverage.
“I don’t know if the system is broken,” Dr. Bendel said. “I don’t know if it was ever right. But there is, it shouldn’t be that difficult to get drugs for our patients.”
Walt Cherniak, a spokesperson for the family’s insurance company Aetna said:
“This is a very difficult situation, and Aetna is very sympathetic to the Mertz family. Based on the most recent studies, the requested medications are experimental and investigational for treating this type of disease. We are working with the family and the treating physicians to help them assess their next steps.”
If this was your child, fighting for their life, you would do anything in your power to save them. “Experimental” or “investigational” remedies simply mean hope. And for a child with cancer, hope should be enough of a reason. The Mertz family agrees. So they plan to pay for the chemotherapy on their own while they fight the insurance company.
“Health cost can drag people into bankruptcy but you don’t want the hindsight of I should’ve, could’ve,” says Mertz. “You just do it. So we’ll do everything we can right now. I only have one focus right now in life.”
If you are able, please consider donating to the Mertz family to help fund Maddison’s fight.More On