Kerala has quietly become a trailblazer in the rare diseases space. In 2022, the state began offering high-cost therapies free of charge to children with spinal muscular atrophy (SMA). What started small has now grown into the Kerala United Against Rare Diseases (KARE) program, and the state is set to extend support to all SMA patients up to 18 years of age. The program centers on risdiplam, a Swiss-made drug that modifies SMN2 mRNA splicing to boost survival motor neuron protein levels. Lifelong therapy is essential for SMA patients, but the costs— Rs.
72 lakh annually for the first two years and Rs. 56 lakh from year three—are out of reach for most families. Kerala negotiated a much lower price with the manufacturer, though the exact figure remains confidential. As Health Minister Veena George put it: no patient should be denied a dignified life just because their disease is rare and…
