Supreme Court Hears Plea Seeking Free Treatment For Children With Muscular Dystrophy

The Supreme Court today (August 9) today heard a batch of petitions filed by parents of children suffering from Muscular Dystrophy who seek a policy for free treatment of the disease.

The bench of CJI DY Chandrachud,Justices JB Pardiwala and Manoj Misra was hearing a petition seeking to commence a national programme for the treatment of children with muscular dystrophy. The petition further sought the 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.

The counsel for the petitioners informed the bench that out of 250 petitioners who had filed the present case, 5 children have 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, 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 issued notice in the petition in October 2023 and had sought the assistance of Additional Solicitor General Aishwarya Bhati.

Yesterday, ASG Bhati requested the bench to grant the Union time to file a response with respect to the changes in the policy of the Centre and the funds that have been disbursed so far. The Court while allowing the same also asked the ASG to get more clarity on the status of a similar petition pending before the Delhi High Court. 

It may be noted that in March 2021, the Delhi High Court had directed the Centre to state on affidavit its budget for health in the last 5 years and if any unused budget can be used for the treatment of the children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's syndrome, et al

About Muscular Dystrophy And What The Petitioners Seek 

The Public Interest Litigation (PIL) in question was filed by a few parents whose children were suffering from muscular dystrophy, a genetic disease which causes progressive weakness and loss of muscle function in the legs, pelvis, and arms and that makes the children wheelchair-bound and shortens their life.

Some types of muscular dystrophy also affect the heart, lungs, spine, brain etc. As per the plea, though there are various techniques for its diagnosis, due to lack of awareness and non-availability of diagnostic facilities, this disease is not diagnosed at an early stage and therefore timely treatment is not given. 

Further, treatment of the disease is also very expensive and available at selected centres only, which makes it out of reach for most parents. In fact, the treatment of this disease is not available in most of the states and is highly expensive in states it is available at. 

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.  

Case Details : Ratnesh Kumar Jigyasu And Ors. v. Union Of India And Ors. W.P.(C) No. 1012/2023 PIL- 

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