By Consumers For Quality Care, on August 5, 2019
Nineteen-month-old Maisie Green has Type 1 Spinal Muscular Atrophy, a progressive terminal disease that attacks the body’s muscles. Ciji Green, Maisie’s mother, says that 95 percent of babies with the disease die from breathing complications before their second birthday, KJCT 8 reports. Maisie is currently being treated with Spinraza, a medication that slows the progression of the disease.
The Green family was encouraged in May when the FDA approved Zolgensma, a gene therapy treatment, which can stop Maisie’s disease in its tracks. Their excitement, however, was short lived. The Green’s insurance company, Rocky Mountain Health Plans, denied coverage for the treatment.
“We watched five our friends lose their babies to SMA, all around Maisie’s age, all on Spinraza. AS we haven’t had that with Zolgensma. We haven’t watched children die off with that and that’s kind of the hope, that we won’t lose our baby. We won’t have to bury her,” said Green.
In its denial letter, Rocky Mountain Health Plans said that because Maisie is older than the children in the medication’s trial there is no clinical evidence to justify starting Maisie on the new medication. The company also argued that Spinraza, the medication she is currently on, has been successful in slowing the progression of the disease.
“It’s actually a lumbar puncture every four months, with no sedation. She has to have a spinal tap done and then they’ll insert 5ml of Spinraza. It’s slowing the progression, which we appreciate so very much, but it doesn’t stop it,” said Green.
Zolgensma costs more than $2 million. The Greens are now racing against the clock, trying to fundraise to help Maisie receive the medication. The family has filed an appeal to try and get the medication approved.
“What would you do if it was your baby? This is a baby’s life at stake. Literally a matter of life and death. What would you do? Cause I’ve done everything I possibly can,” said Green.
Luckily for the Greens, Rocky Mountain Health Plans reversed course and agreed to cover Zolgensma for Maisie. Green cried when she received the news.
“I can’t describe it, knowing that my baby is going to have a chance,” Green said.