Kerala has set a model in treatment of rare diseases says Veena George

THIRUVANANTHAPURAM: Health Minister Veena George has said that all children under 12 years of age who applied for Spinal Muscular Atrophy (SMA) have been given free medicine through a special scheme of the state government. The minister said that further treatment and free medicines for the next stages will also be given to them.

Earlier, the drug was only given to children up to 6 years of age, but recently it was extended to 12 years of age. Medicine was given to 23 children above 6 years of age. Including this, a total of 80 children up to 12 years of age were given free medicines worth Rs 6 lakh per dose. Medicines worth Rs 20 lakh per month were also distributed free of cost to children suffering from lysosomal storage diseases. Apart from this, free treatment to people suffering from other rare diseases, whose treatment cost is around Rs 50 lakh, was also given through Sree Avittam Thirunal (SAT) Hospital, the Centre of Excellence for Rare Diseases.

“This government has taken a decisive step in the treatment of rare diseases. For the first time in India, a state has started providing free medicines for rare diseases at the government level. To ensure comprehensive care for rare diseases, the state has implemented the KARE (Kerala United Against Rare Diseases) Scheme,” said Veena George. The aim is to expand the treatment plan by finding financial support, including crowdfunding. And for the first time in the country, the hub and spoke model was implemented in the treatment of rare diseases, the minister said.

For the treatment of people suffering from rare diseases, SMA clinic was started for the first time in Thiruvananthapuram SAT. An innovative surgery to correct the curvature of the spine in affected children has been successfully started for the first time in the government sector at Thiruvananthapuram Medical College Hospital. Five surgeries have been performed so far. In private hospitals, surgeries costing around Rs 15 lakh are done free of cost in medical colleges. A genetic disease department was started in the hospital. The minister also informed that SAT Hospital has provided services of expert doctors in various departments such as pediatric neurology, genetic disease department, respiratory disease department, orthopedic department and physical medicine department under one roof for those suffering from rare diseases.

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