GRAND JUNCTION, Colo. (KKCO/KJCT)-- A Grand Junction baby who suffers from a fatal disease has been denied coverage for a life-saving treatment by the insurance company.
"Maisie was diagnosed with Spinal Muscular Atrophy, Type 1. It's a progressive terminal disease that slowly, well not slowly, quickly kills the muscles off," said Ciji Green, Maisie's mother.
Most babies with Spinal Muscular Atrophy don't live past the age of two. Maisie is 19 months.
"Before the age of two, 95 percent of them die from breathing complications," said Green.
In May, the FDA approved a gene therapy, Zolgensma, which would stop the disease in its tracks.
"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.
The price for the gene therapy is a pricey $2.2 million. The family has applied for coverage by Rocky Mountain Health Plans, but the insurance denied coverage for the life-saving drug.
"I was crushed. I don't get to fight them. Maisie doesn't get to fight them. She needs a voice and these insurance companies, that just get to make these determinations, don't know these kids and don't know the heartache and devastation they put upon families," said Green.
Rocky Mountain Health Plan sent over a statement into how they came to their conclusion.
“We apply emerging clinical evidence on behalf of the state Medicaid program to evaluate coverage requests for new medications. In this case, we conducted a review of the available evidence, clinical treatment records, and coordinated with the State in response to the member’s request for Zolgensma. The member filed an appeal today and we will work with the state to evaluate as quickly as possible.”
In the denial letter, sent to the family, it states their reasoning as:
"The oldest child enrolled to start therapy was 5.9 months old, therefore; there is no data to support starting therapy in a child older than 6 months of age."
The letter goes on to say that Maisie's current treatment is sufficient.
"Spinraza has been working to slow progression."
"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.
The baby's doctors, the pharmaceutical company, as well as, state politicians have been appealed on her behalf, but with no luck. Their only hope is to raise the money needed for the treatment.
"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.