Kerala Makes a crucial step in the treatment of rare diseases. For the first time in India, all children suffering from spinal muscular atrophy (SMA) have received free medicines at the government level. This initiative, undertaken through a special government scheme in Kerala, provides the drug to all children under the age of 12 affected by SMA. Spinal Muscular Atrophy (SMA) is a genetic muscular disease diagnosed in one out of every 10,000 babies in India. The disease causes a gradual and irreversible loss of muscle strength due to genetic changes in the spinal nerves that control the muscles.

Previously, the drug was only given to children up to the age of six years suffering from SMA in the state. However, to offer more support to those affected by rare diseases, the drug is now available free of cost to children up to the age of 12. A total of 80 children up to 12 years of age, including 23 children above six years, received medicines worth around Rs 6 lakh per dose at no cost. These children will also receive follow-up treatment and free medicines for subsequent phases.

Children suffering from Lysosomal storage diseases (LSDs) were given medicines worth Rs 20 lakh per month free of cost. Additionally, those suffering from other rare diseases, for which treatment costs around Rs 50 lakh, will be treated at the Centre of Excellence for Rare Diseases (SAT). The state has implemented the KARe  Scheme (Kerala Against Rare Diseases) to ensure holistic care for rare diseases. It aims to expand the treatment plan by securing funding, including through crowdfunding. Furthermore, for the first time in the country, the Hub and Spoke model has been implemented in the treatment of rare diseases.

A Spinal Muscular Atrophy clinic has been established at SAT Hospital, Thiruvananthapuram, for the treatment of those suffering from this rare disease. For the first time in the state, a state-of-the-art surgery to correct the curvature of the spine in children with SMA was successfully conducted at Thiruvananthapuram Medical College Hospital. So far, five surgeries have been successfully completed, each costing around Rs 15 lakh in private hospitals but done completely free of cost at this facility. With the opening of the genetic department at SAT Hospital, more effective treatments for rare diseases are now possible. SAT Hospital provides the services of expert doctors from various departments, such as paediatric neurology, genetics, respiratory, orthopaediatric, and physical medicine, under one umbrella for the treatment of such diseases. These measures will ensure better health services for those suffering from rare diseases and elevate Kerala to the forefront of healthcare services.