Initiatives

Kerala has increased the age limit for providing free Risdiplam medicine to patients with Spinal Muscular Atrophy (SMA) under the State’s rare disease care scheme, KARE. Earlier, the medicine was given free of cost to children up to 12 years of age. The benefit has now been extended to patients up to 25 years. All those diagnosed with SMA Type 2 through genetic testing will be eligible under the revised criteria. The decision was taken considering the long-standing demands of patients and their organisations. An allocation of Rs 30 crore was set aside in the latest State Budget for this purpose. With this move, nearly 80 per cent of confirmed SMA patients in Kerala will receive the medicine free of cost.

Rare disease treatments are highly expensive and require sustained medical support. To address this, the government launched KARE in 2024 as a comprehensive care programme for rare diseases. Through this initiative, many children are receiving free treatment and continuous follow-up care. By expanding the age limit, more young patients will be able to access treatment, leading to better quality of life and greater independence. Medicines will be distributed based on genetic test results and the recommendations of an expert committee.

More than 100 children who might otherwise have faced severe disability or life-threatening complications due to progressive muscle weakness are now showing improvement through the government’s comprehensive intervention. Kerala maintains that access to life-saving treatment should not depend on financial capacity. In 2022, the State became the first in India to provide free treatment and medicines to SMA patients.