MINNEAPOLIS (WCCO) -- A 7-year-old's fight against a rare form of cancer became tougher this month. Doctors diagnosed the young gymnast with stage four cancer in her spinal cord in November. Now her family is navigating a financial fight.
Maddison Mertz's smile and laugh is contagious. She enjoys doing 7-year-old things, like making slime with friends.
Last fall, her parents thought neck pain may be the result of gymnastics. Instead it was stage four cancer.
"We got the news she had a tumor inside her spinal cord. It was tough of course," dad Zack Mertz said.
Since then, surgery removed 95 percent of the tumor. She's gone through radiation and now needs chemotherapy drugs.
"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," Mertz said.
Glioblastoma multiforme is extremely rare in kids. Genetic testing showed doctors what works for some adults won't work for Maddison.
"Maddison, she doesn't have the cards in her favor. She's 7. She's a pediatric patient. All the studies are in adults," Mertz said.
The team treating her at Children's Hospital and Clinics Minnesota is doing everything they can to give her more time with her family. There are targeted chemotherapy drugs Dr. Anne Bendel thinks could help Maddison. With this type of cancer, she says it tends to come back six to 12 months after radiation.
"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," Dr. Bendel said.
And that is what Dr. Bendel has prescribed. Hope: with chemo drugs that will cost $20,000 a month if not covered by insurance.
"I don't know if the system is broken. I don't know if it was ever right. But there is, it shouldn't be that difficult to get drugs for our patients," Dr. Bendel said.
Nurse Case Manager Heather Johnson is working tirelessly on Maddison's behalf.
"In a perfect world if our oncology team did the research and had the tests and felt like these were the best medications then they would be covered by the insurance company. It's frustrating but it's also just disheartening that you have these patients that are sick and there's not much you can do for them if they deny the medications," Johnson said.
Through Maddison's journey her parents have learned a deeper love they never knew existed.
"You say like you know you love your kids but when this happens like the love is just overpowering," Mertz said.
And so the Mertz family plans 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. You just do it. So we'll do everything we can right now. I only have one focus right now in life," Mertz said.
Walt Cherniak, spokesperson for the 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."
After two denials, the last option for the Mertz family is to request an external review. That could take months.
The team at Children's is working directly with the drug companies for what's called compassionate funding, hoping they will pay for the medication.
A GoFundMe account has been set up to help the family.
UPDATE (2/23/17): Cherniak updated Aetna's position regarding the Mertz family's situation: "Aetna has decided to cover the requested one-month treatment with sorafenib and vorinostat. We had another conversation with the treating physician yesterday, and elected to re-evaluate the case. The requested therapy, despite the limited evidence base, is perhaps the only reasonable treatment available." However, the nurse care manager working with the Mertz family said they requested the drugs to be approved for a year.
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