Nishka Srinivas Veluvali –
Published On: December 08, 2021 at 20:00 IST
The Delhi High Court on 07 December, Tuesday, questioned the union government for not making effective use of the funds allotted to support the treatment of children suffering from rare diseases.
Justice Rekha Palli stated that, “What is this? Children are dying because of lack of funds… What about the corpus which is available with the government here? I will not permit these children to die despite funds being available. When there are funds, why should the children suffering from rare diseases not get it?”
The Petitions were filed on behalf of the children who are living with the rare diseases such as Duchenne Muscular Dystrophy (DMD), Hunter’s syndrome requesting the centre to provide them free and continuous treatment as the treatments for the same are expensive.
The Court, in September had directed the union government to take the necessary steps to transfer Rs. 63 crores from the Crowd Funding Account, with the Kerala High Court to the accounts of rare diseases.
Additional Solicitor General (ASG) Chetan Sharma informed the Court that an impleadment application was filed before the Kerala High Court but even after the application was allowed, it was not of much help.
The Court was however not satisfied with the submissions and thus it claimed,
“On the next date, the ASG will also obtain instructions whether it is possible to provide treatment to petitioners and thereafter adjust the amount which may be received in the portal set up for same purpose.”
The Court had adjourned the matter for 15 December.