GRAND JUNCTION, Colo. (KDVR) — A family in Colorado is asking for help to raise over $2 million to pay for a drug that would save her child’s life.
Ciji Green’s daughter, Maisie, was diagnosed with type 1 spinal muscular atrophy in June of 2018. It’s a genetic disorder that steals the body’s abilities to use muscles, swallow, roll, sit up—and eventually, breathe.
There’s an FDA-approved treatment for kids under 2 years old—called Zolgensma—that not only stops the disease from progressing, but can also reverse the symptoms over time. The one time dose would cost $2.2 million out of pocket.
Green said Medicaid denied Maisie because she’s responded to the other drug she takes, and they don’t have clinical data to support the switch at her age. SPINRAZZA, the drug Maisie is currently on, is another FDA treatment that Green says only slows the progression of the disease.
Currently, she said Medicaid covers the cost of a SPINRAZZA injection every four months — each time costing $125,000.
Green’s sister set up a GoFundMe page to raise money for Maisie’s treatment. For more information and if you would like to donate, click here.