Girl gets life-changing cystic fibrosis treatment at Sanford

Pharmacy, CF team help McKenzie Jost get early approval for new drug

Girl gets life-changing cystic fibrosis treatment at Sanford

McKenzie Jost is a typical 11-year-old goofball. She likes spending time with guinea pigs, and watching SpongeBob, but she’s also spent a lot of time being treated at Sanford Health in Fargo, North Dakota.

McKenzie has cystic fibrosis, which causes thick mucus build-up in her lungs along with other health issues. Right now though her mother, Amelia Jost, says she’s feeling as good as she has in quite some time.

“She’s on Day 26 and she looks really great so far,” said Amelia.

It wasn’t so long ago that things were looking much worse.

“The past year, I haven’t been surprised any time she got sick,” said Amelia. “It was more just like bracing myself and trying to get through it. When she was admitted, I wasn’t even shocked anymore. It just became the new norm.”

Teamwork makes the dream work

Thanks to the efforts of McKenzie’s doctors and the connections of Sanford Specialty Pharmacy, McKenzie was recently approved to start treatment on a new drug.

“Currently, Trikafta is approved for 12 years and older,” said Jill Ostby, the Specialty Pharmacy manager at Sanford Health. “Her care team reached out. They really wanted to try to see if they can get insurance approval for Trikafta now versus waiting another year.”

So this January, just a few days before her 11th birthday, McKenzie got some great news. She had been approved to start treatment one year early. In a Facebook video, she thanked her doctors, and called her new medicine “life-saving.”

“We were counting down the days until she turned 12,” Amelia Jost said. “But then I got a call from Sanford Pharmacy saying she was approved. It was just a whirlwind of emotions because I didn’t expect it. I didn’t think it was going to happen.”

“Before I would be coughing a lot,” said McKenzie. “But then after I would be like silence. Now it was really easy for me not to cough. It was really paradise.”

It wasn’t just the Jost family who was excited either.

“The whole care team was thrilled for her,” Ostby said. “I think she holds such a special place in everybody’s heart, and our team having this extra connection, they were messaging me right away, saying, ‘We got this chill, but Mom was so excited!’ and that makes a huge impact to our team.”

McKenzie is now just about a month into her treatment. She’s breathing better than she has in a long time, and she’s gaining weight, something that can be difficult for CF patients. Thanks to her doctors, and the ability of Sanford Specialty Pharmacy to coordinate care, McKenzie can get back to being a kid.

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Posted In Children's, Fargo, Pulmonology, Specialty Care