NEW DELHI: The Supreme Court has granted two weeks’ time to the Additional Solicitor General (ASG), senior law officer of the Centre, to get more clarity on the status of a petition pending before the Delhi High Court regarding muscular dystrophy.Around 250 petitioners, primarily parents of children suffering from muscular dystrophy, had moved the apex court seeking a policy for free treatment of the disease.The petitions sought a direction to the Centre to classify muscular dystrophy under “special category rare disease” instead of “rare disease” and enhance financial support for the patients under the National Policy for Rare Diseases, 2021.The bench of Chief Justice of India DY Chandrachud and Justices JB Pardiwala and Manoj Misra was hearing the batch of petitions seeking a national programme for the treatment of children with muscular dystrophy. The 250 petitoners, led by Ratnesh Kumar Jigyasu, were represented by lawyer Utsav Singh Bains.The apex court allowed the request of the ASG who sought more time to apprise the court on the developments in the muscular dystrophy issue. “The request of Aishwarya Bhati, the ASG, is to list the petitions on 27 August 2024. The Union of India shall file a counter affidavit in the meantime,” the court said.The petitions also sought formulation of a standard policy for issuing unique ID cards to patients of muscular dystrophy to enable them to get free treatment at any government or private hospital.During the course of the hearing on Friday, Bains informed the Supreme Court that out of 250 petitioners who had filed the present case, five children had died since the filing of the case and 10 children were severely critical. “Ever since the notice was issued in the matter, almost 250 children came with their parents to the Supreme Court. Now what has unfortunately happened is that it has been 10 months since the notice was issued, five of the petitioners are dead. Ten are critical as of I speak and they are under the protection of the court,” the petition said.The court issued notice in the petition in October 2023 and had sought the assistance of ASG Aishwarya Bhati.In March 2021, the Delhi High Court had directed the Central government to file an affidavit on its budget for health towards muscular dystrophy in the last five years.
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