2 weeks ago
112
The State government has initiated the distribution of medicines to those children below the age of 12 years who are afflicted with spinal muscular atrophy (SMA).
Earlier, only children with SMA till the age of six years were given medicines for free.
57 children
In the first phase, 10 children had been given the prohibitively expensive SMA drugs. Till now, 57 children have been given medicines. Now that the age limit is being raised to 12 years, another 23 children will also receive medicines for free, a statement issued by the office of the Health Minister on Saturday said.
It was during Navakerala Sadas meetings, a public outreach programme of the State government, at Kozhikode that an SMA-afflicted person requested that the free drugs be extended to children above 6 years of age also.
The statement issued by the Health Minister said that Kerala was the first State to begin free distribution of drugs for a rare disease like SMA.
The supply of the SMA drug, Risdiplam, to SMA-afflicted children below the age of six years began 18 months ago. Till now 600 units of the drug has been distributed and most children have regained mobility.
SMA-afflicted children above six years have a lot of limitations because of scoliosis, which also affects the capacity of the lungs. With the government taking over the additional financial liability of covering children above six years too, these children are expected to improve slowly.
5 successful surgeries
The first SMA clinic was set up in the SAT Hospital, Thiruvananthapuram, and free surgery to correct scoliosis of the spine in SMA patients was also initiated at the Thiruvananthapuram Government Medical College hospital. Till now, five such surgeries have been completed successfully, totally free of cost
Under a Union government scheme, SAT Hospital had been recently chosen as one of the hospitals to be elevated as a Centre of Excellence in the management of rare diseases. Through the scheme, the hospital had been given a grant of ₹3 crore also.
The hospital now offers the services of paediatric neurology, genetic medicine, respiratory medicine, orthopaedics, and physical medicine under one roof on a single day for patients with rare diseases.
The government has also implemented the Kerala Against Rare Diseases (KARE) scheme, a comprehensive care strategy to prevent and manage rare diseases. KARE envisages prevention and early detection of rare diseases, making the latest technology/therapy available to individuals, ensuring home-based care and psychosocial support for parents and caregivers.
