‘Maisie’s Army’: How a grassroots group is mobilizing to help toddlers access a lifesaving drug
When the family of 20-month-old Maisie Green heard late last month that their insurance company in Grand Junction, Colo., had agreed to cover a new gene therapy for her spinal muscular atrophy, they were elated. They also knew it was no accident.
For two months, the family and a group of more than 700 volunteers, calling themselves “Maisie’s Army,” ran a social media campaign to convince the Greens’ insurer to overturn its decision to deny Maisie access to Zolgensma — the world’s most expensive drug at $2.1 million. The army contacted local news outlets to raise awareness of Maisie’s case. And her mother, Ciji Green, arranged an in-person meeting with Maisie and representatives of the insurance company.
“I want you to look her in the eye and tell her no,” Green recalled thinking about the meeting.
After the approval from Rocky Mountain Health Plans came through, one of the volunteers posted a call to arms
