The Supreme Court on Friday sought responses from the Centre and states on a petition filed by patients with advanced levels of muscular dystrophy seeking financial assistance for their lifelong treatment that runs into several crores of rupees.
A bench headed by Chief Justice of India (CJI) Dhananjaya Y Chandrachud, while hearing a petition in this regard filed by nearly 251 children suffering from muscular dystrophy, directed the Centre to respond to their plea within four weeks and asked additional solicitor general (ASG) Aishwarya Bhati to assist in this regard.
Muscular dystrophy (MD) refers to a group of genetic diseases that cause progressive weakness and degeneration of skeletal muscles. These disorders vary in age of onset, severity, and the pattern of the affected muscles.
Advocate Utsav Bains, who appeared for the petitioners explained that muscular dystrophy is classified into three categories. While the first level can be cured with medication and physical therapy, the second and third levels are complicated and require genetic therapy. According to him, this is a costly treatment and is out of bounds for common people like the petitioners and gene therapy centres are not located in every state.
The petition said that while the first level of this disease is covered with financial assistance of Rs.50 lakh under a national policy of rare diseases, there is no financial incentive to aid patients of the second and third levels.
{{/usCountry}}The petition said that while the first level of this disease is covered with financial assistance of Rs.50 lakh under a national policy of rare diseases, there is no financial incentive to aid patients of the second and third levels.
{{/usCountry}}“The national policy has not reached many patients as the cost of the treatment remains very high and runs into several crores of rupees for one patient,” Bains said.
The petitioners urged the Court to classify muscular dystrophy under a “special” rare disease category under which treatment could be made free of cost, besides spreading awareness about the disease and educating the public at large.
The plea also sought the formulation of a policy to allow free prenatal tests for pregnant women for the prevention of birth of children with muscular dystrophy and the setting up of gene therapy centres in every state capital and in union territories.
Medicines to treat muscular dystrophy should be made available free of cost, it said, adding trials for gene therapy be also started.
(with agency inputs)