Meet the army fighting insurers for access to gene therapy

The dawn of highly effective but highly expensive rare disease drugs has left many families to fight with insurance companies over access to medicine. The Greens, a family from Colorado, chose to turn their its experience into a replicable model.

As STAT’s Shraddha Chakradhar reports, the family assembled an online army to get 20-month-old Maisie Green access to Zolgensma, Novartis’s gene therapy for spinal muscular atrophy. But instead of disbanding once Maisie got treatment, they mobilized a group of more than 700 volunteers with the goal of securing Zolgensma coverage for infants with SMA across the country. That means flooding insurers with calls and emails, reaching out to local news outlets, and keeping tabs on progress through a Facebook group.

“The community is amazing,” said Katee DellaMaggiora, mother of an infant with SMA.

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