The Supreme Court has granted two weeks to the Additional Solicitor General (ASG) to provide clarity on a pending petition in the Delhi High Court regarding muscular dystrophy treatment. The petition, filed by 250 parents of children with muscular dystrophy, seeks a national policy for free treatment and classification of the disease as a “special category rare disease” under the National Policy for Rare Diseases, 2021.
The petitioners, represented by lawyer Utsav Singh Bains, are seeking enhanced financial support and a standard policy for issuing unique ID cards to patients for free treatment at government or private hospitals. During the hearing, Bains informed the court that five children had died and 10 were critically ill since the petition was filed, highlighting the urgency of the matter.
The Supreme Court has allowed the ASG’s request to list the petitions on August 27, 2024, and directed the Union of India to file a counter affidavit in the meantime. The Delhi High Court had earlier directed the Central government to file an affidavit on its budget for health towards muscular dystrophy in the last five years, in March 2021.
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