On August 9, the Supreme Court reviewed a series of petitions submitted by parents of children with Muscular Dystrophy, who are advocating for a policy to ensure free treatment for the disease.

The bench, comprising Chief Justice DY Chandrachud and Justices JB Pardiwala and Manoj Misra, was considering a petition calling for the initiation of a national program for the treatment of children with muscular dystrophy. Additionally, the petition sought the creation of a standardized policy for issuing unique ID cards to muscular dystrophy patients, which would allow them to receive free treatment at any government or private hospital.

The counsel for the petitioners informed the bench that, of the 250 petitioners involved in the case, 5 children have died since the filing of the petition, and 10 children are in a critically severe condition.

"Ever since the notice was issued in the matter, almost 250 children came with their parents to the Supreme Court, notice was issued. Now what has unfortunately happened is, it's been 10 months since the notice was issued, 5 of the petitioners are dead. 10 are critical as of I speak and they are under the protection of the Court."

The Court had issued a notice in the petition in October 2023 and sought the assistance of Additional Solicitor General Aishwarya Bhati. Yesterday, ASG Bhati requested the bench for additional time for the Union to file a response regarding the changes in the Centre's policy and the funds disbursed thus far. The Court granted this request and also asked the ASG to obtain more information on the status of a similar petition currently pending before the Delhi High Court.

In March 2021, the Delhi High Court had instructed the Centre to provide an affidavit detailing its health budget for the past five years and to indicate whether any unused funds could be allocated for the treatment of children suffering from rare diseases such as Duchenne Muscular Dystrophy (DMD), Hunter's syndrome, and others.

The Public Interest Litigation (PIL) in question was filed by several parents whose children are suffering from muscular dystrophy, a genetic disorder that leads to progressive weakness and loss of muscle function in the legs, pelvis, and arms. This condition results in wheelchair dependence and significantly shortens the children’s lifespan.

The PIL seeks for muscular dystrophy to be classified under "Special Categories Rare Disease" instead of "Rare Disease" and for the government to enhance financial support under National Policy for Rare Diseases, 2021. It also seeks for private and government insurance companies to include muscular dystrophy in their insurance policy schemes.