FAIRMONT, Minn. (KEYC) — A Fairmont family is waiting for a decision after appealing Medicaid’s decision not to pay for a drug that treats their daughter’s genetic disorder.
One year-old Nora Phillis has Spinal Muscular Atrophy.
SMA is a genetic disorder characterized by weakness in muscles.
It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement.
Sadly, the family has dealt with the disease before.
“We first became parents in April of 2016 when our oldest daughter, Amelia was born. And pretty much right from the beginning, she was weaker than most newborns," Samantha Phillis, Nora’s mother, said.
Amelia had SMA type 0.
Children born with this type have weak respiratory muscles and are not expected to live past six months.
Amelia passed away when she was three months old.
“We always kind of called her a magical unicorn baby. She was just one of those kids that like, she had really bright, blue eyes. And she just had this personality that just kind of drew people in," said Samantha.
Her father, Justin, added that Amelia could communicate with her eyes.
“She would just look at you, and somehow you were communicating back and forth,” he said.
There was no treatment when Amelia was diagnosed, but in Dec. that year, Spinraza became the first FDA approved treatment for SMA.
Nora, who has SMA type one, uses Spinraza and is doing well.
But Spinraza can cost $125,000 per dose.
The family uses Medicaid and is appealing Medicaid’s decision to no longer pay for the drug.
They just had a court hearing on Friday and are waiting for the decision.
“The other thing that they said is that she didn’t make any progress, but she hadn’t had an evaluation of her mobility for several months, and I mean, she’s completely different mobility wise than she was even two months ago," Samantha said.
If the state decides to deny it again, the company that makes the drug will cover the cost, but the family has to go through court first.
“Basically argue the case and say this drug has made a huge difference for Nora. We really need you to help us continue to give her this medication so that we can continue to see what she can do," Samantha said.