‘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.
