BALTIMORE — In the past year, Amelia Parsons endured four brain surgeries and spent months in the hospital for radiation treatments, chemotherapy, and stem cell transplants. She's 3 years old.
Now out of the hospital, Amelia’s family faces another hurdle: getting insurance coverage for critical medications. At the beginning of this year, they started receiving rejection notices from their new pharmacy benefit manager, MedImpact. Since then, it's been a battle to appeal the denials or risk their financial wellbeing.
“Transplant, transplant, transplant day and then finalizing transplant,” said Kelly Parsons, Amelia’s mom, as she pointed to certificates and posters lining the entryway of their home.
“They scrub you head to toe, including eyelids, everywhere. Every crease to get the chemo off of your skin, because you'll get burns, so these are for her surviving what are called the thiotepa baths,” Parsons explained.
One poster showcases 30 different colorful stickers, representing “every single time she was sedated, put under, and had radiation to her brain,” Parsons noted.
At just two years old, Amelia was diagnosed with choroid plexus carcinoma, a rare and aggressive form of brain cancer. However, on December 18, she rang the bell, symbolizing the end of ten grueling months of treatment.
“Just really horrible. And we're also one of the lucky families, because there are many families who don't get to come home like we did,” Parsons reflected.
Despite this milestone, the journey isn't over. For the next few years, Amelia will require an array of medications.
“Every day, she is on oral chemotherapies, different ones, rotating every 21 days to kind of keep the chemo on its toes. And then every four weeks we also go in for a lumbar puncture, where she gets chemo into her spine, which goes into her brain,” Parsons shared.
And at the beginning of this year, the Parsons learned their new pharmacy benefit manager (PBM), MedImpact, rejected coverage of several essential medications.
“Our insurance switched January 1. We work for the state,” said Parsons. “Then we got rejection after rejection. I have a stack this big of rejection letters. I've never gotten a rejection for anything ever.”
READ MORE: Pharmacy benefit manager denies teen's essential medication over a small age gap
One medication, Sprycel, prescribed by Amelia’s doctors, costs over $18,000 per month without insurance. MedImpact also denied coverage for dissolvable Everolimus, estimated to exceed $10,000 for a monthly supply.
The PBM denied coverage stating these were for off-label use.
Amelia's doctors submitted letters detailing the need for these less toxic medications and filed a complaint with the Maryland Insurance Administration. The case then went to independent review by another physician.
“And it got denied at the highest level possible,” said Parsons. “I mean, it's enraging. This is life and death like this is the most serious thing that could be.”
Recently, the family caught a break when they were approved for assistance through the pharmaceutical company for Sprycel. Unfortunately, they were informed they didn’t qualify for the assistance program for Everolimus.
“We will get the medication. If we have to sell the house, if we have to sell everything, we will get the medication. We're just hoping we don't have to be homeless in order to get the medication for our daughter,” Parsons declared.
They think about this every day, all day, while trying to give their daughter a somewhat normal childhood.
“Right now, Amelia only has two friends, and they're her cousins, and that's kind of by design, because she's immunocompromised, so she can't just go anywhere. She can't just go to a play space and play with other kids,” Parsons shared.
And now that Amelia is improving, Parsons hopes to connect her with other immunocompromised children. She posted in “Canton Neighbors,” a neighborhood Facebook group and received dozens of responses.
“From all different people, adults included saying they're willing to have Amelia over to play with animals. I think a police officer responded to play with his dog. A lot of people offering just support,” Parsons said.
She hopes to take them up on their offers, but first, she’s focused on getting her child the medications she needs and wants to remind other parents to exhaust every avenue, file all the appeals, and to know that they will also get past this.
“There is a light at the end of the tunnel, even though it seems so far away and impossible, it is there, and hopefully everybody gets a chance to come home and their biggest worry is, how do I find friends for my kid?” said Parsons.
WMAR-2 News Mallory Sofastaii first reached out to MedImpact regarding Amelia's coverage denials on February 27. She sent multiple follow up emails, tried five different email addresses, and sent LinkedIn messages to three MedImpact employees. She never heard back.
WMAR-2 News previously reported on another family initially denied coverage of a medically necessary treatment. Their pharmacy benefit manager was also MedImpact. To see that report, click here.
READ MORE: Pharmacy benefit manager denies teen's essential medication over a small age gap
If you receive a denial from your health insurer, you can file an appeal with the Maryland Insurance Administration.
The Maryland Attorney General's Health Education and Advocacy Unit can also assist with appeals for private health insurance plans.
Parsons said she’s able to get the pill version of Everolimus with a $10 co-pay, but Amelia needs the dissolvable version since she’s a toddler, which was denied. Parsons is now working to find a compounding pharmacy that can turn the pill into a liquid.
Parsons also recommends patients reach out to others for help — social workers at the hospital, the doctors, she found support in a brain cancer Facebook group and through other outlets she learned about from the Maryland Insurance Administration.