CHENNAI: The State government has released Rs 5 crore for the treatment of 11 children with Lysosomal Storage Diseases (LSDs), as per the directions issued by the Madras High Court in March this year.
The court had directed the Central government to allocate Rs 4.40 crore for the treatment of 11 children in Tamil Nadu affected by LSDs, and directed the State to allocate at least Rs 5 crore every year for treatment of patients with rare diseases. It further instructed the State government and Institute of Child Health, Egmore to provide treatment without delay.
The court passed its order on a PIL moved by the Lysosomal Storage Disorders Support Society (LSDSS) seeking financial aid from the government for people with rare diseases. “The State has released `5 crore, and drugs will be procured by the Tamil Nadu Medical Services Corporation,” director of medical education R Narayana Babu told Express.
“We got a list of required drugs from the Institute of Child Health, and are buying them. They will reach us in a few weeks,” said P Umanath, managing director, Tamil Nadu Medical Services Corporation.
S Ezhilarasi, director, Government Institute of Child Health, Egmore, explained that parents of affected children will be informed that treatment is available at the institute, once the drugs are received.
Lysosomal Storage Disorders Support Society vice president J Karunakaran, who is also a parent of a child with LSD, said, “Even the rich cannot afford this treatment. Each vial of drugs costs several lakh rupees, requiring parents to spend close to Rs 1 crore per year. Children in India have died waiting for treatment as the drugs have to be imported from abroad.” He added that a few children get free treatment through international charities, and the Society moved court seeking help from the government.
LSDs are rare metabolic disorders. Lysosomes are a group of enzymes within cells that digest large molecules and pass the left overs to other parts of the cell for recycling. Though there are many types of LSDs, treatment has been approved for at least five types, including mucopolysaccharidoses (MPS) I, Pompe and Gaucher disease, Dr Ezhilarasi explained.