Inside STAT: How a grassroots group is mobilizing to help toddlers access a lifesaving drug

MAISIE GREEN (COURTESY CIJI GREEN)

The two-months-long process to ensure Colorado toddler Maisie Green could get access to the spinal muscular atrophy drug Zolgensma was the work of an army. “Maisie’s Army,” to be exact, which is a Facebook group of more than 700 volunteers, most of whom are unrelated to Maisie. Together with Maisie’s family, the army called the girl’s insurance company, reached out to news outlets, and raised awareness on social media. After Maisie’s insurance company reversed course and agreed to cover the gene therapy, which has a sticker price of $2.1 million, the army kept up its work. Already, it’s helped five kids with SMA — with more cases in progress. “I’m just hopeful that in a year from now she’ll be running in the yard with her brother,” says Angie Bruce, whose daughter Maddy is receiving the army’s assistance. I have the story here.