7 Oct 2023 2:34 PM GMT
The Supreme Court on Friday (06.10.2023) issued notice in a petition seeking to commence a national programme for treatment of children with muscular dystrophy. The petition further sought for 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. A bench comprising CJI DY Chandrachud, Justice JB Pardiwala, and Justice Manoj Misra issued notice in the plea and also sought for the assistance of Additional Solicitor General Aishwarya Bhati.
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.
Accordingly, the PIL has sought for guidelines to formulate a policy to conduct free prenatal test for pregnant women for prevention of birth of children with muscular dystrophy and also to take steps to establish Gene Therapy Centres in every State capital and Union Territory for children to avail, free of cost. It has also sought for medicines for the disease to be provided for free.
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.
Advocate Prashant Singh represented the petitioners.
Case Title: Ratnesh Kumar Jigyasu And Ors. v. Union Of India And Ors. W.P.(C) No. 1012/2023 PIL-W