Supreme Court notice to Centre on plea for providing support to children afflicted with muscular dystrophy

The Supreme Court on Friday issued notice to the Union government on a plea seeking direction to provide financial and other aid to those suffering from all categories of muscular dystrophy.

A bench of Chief Justice of India D Y Chandrachud and Justices J B Pardiwala and Manoj Misra sought a response from the Centre within four weeks on the petition filed by Ratnesh Kumar Jigyasu and others.

Advocate Utsav Singh Bains, who appeared for the petitioners -- over 200 parents of children afflicted with muscular dystrophy -- contended that there was no provision for financial assistance to the patients put under category two and three of the disease, though those falling under category one get Rs 50 lakh as relief.

The bench decided to examine the matter and directed Additional Solicitor General Aishwarya Bhati to assist the court.

The petitioners contended a large number of children die every year due to the rare muscular dystrophy disease. 

"The National Policy of Rare Diseases has not reached, many patients inasmuch as the cost of the treatment is still very high and runs into several crores for one patient and remains out of reach of a common man like the petitioners. Unfortunately some of the parents have more than one child suffering from the disease which has further added their grievances," their plea said.

The petitioners said the cost of the treatment of the disease is very high but depending on the type and advancement of the disease, the cost of the treatment can vary widely. 

"Procedures like tracheostomy and ventilation are more expensive. Though in the initial stages, only medication and physical therapy are required. However, in advanced cases, genetic therapy is necessary, they said. 

"This treatment is prohibitively expensive, as the medicines are imported from Europe or USA. The current therapeutic options available to treat the disease are minimal and highly expensive treatment with costs shooting up to Rs 2-3 crore per child a year and are mostly imported from abroad, accelerating dosing costs and putting them out of reach for the most families," they said.

The petitioners sought a direction to declare the muscular dystrophy a "Special Categories Rare Disease" instead of "Rare Disease" and commence a national programme for treatment of children suffering by spreading awareness about the disease and to educate public at large.

Among others, they also sought order to the governments to take steps to conduct Gene Therapy in every state capital and Union territories free of cost and enhance the financial support under the National Policy for Rare Diseases, 2011 to a realistic figure.