Thiruvananthapuram: Health Minister Veena George said that all children below the age of 12 who applied for medicines for spinal muscular atrophy (SMA) have been provided with the medicines free of cost through a special scheme of the state government.
“They will be given follow-up treatment and free medicines for the next phase. Earlier, this was given only to children up to six years of age, but recently it was extended to those up to 12 years of age. The medicines have been administered to 23 children above six years of age. Including this, 80 children up to 12 years of age have been given medicines worth Rs 6 lakh each for free,” she said.
“Medicines worth Rs 2 lakh per month have also been distributed free of cost to children suffering from lysosomal storage diseases. Apart from this, medicines are also being provided to people suffering from other rare diseases, the treatment cost of which is Rs 5 lakh, through SAT Hospital, a centre of excellence for rare diseases,” Veena George said.
“This government has taken a decisive step in treating rare diseases. For the first time in India, a state has started providing rare disease medicines at the government level, free of cost. The state has implemented the CARE scheme to ensure comprehensive treatment of rare diseases, with the aim to scale up treatment schemes with financial assistance through crowdfunding. And, for the first time in the country, the hub-and-spoke model has been introduced for treating rare diseases.”
“The first ever SMA Clinic for the treatment of a rare disease has been inaugurated at Thiruvananthapuram SAT Hospital. An innovative surgery to correct spinal curvature in children with SMA has been successfully launched for the first time in the government sector at Thiruvananthapuram Medical College Hospital. Five surgeries have been performed so far.”
“Surgeries which would cost around Rs 1.5 lakh in private hospitals are being performed free of cost at the medical college. A genetics department has been opened at SAT Hospital. Being a centre of excellence for rare diseases, SAT Hospital offers one-stop services from specialists across departments like paediatric neurology, genetics, respiratory diseases, orthopaedics and physiotherapy for people suffering from rare diseases,” she added.
