Delhi High Court Says It Expects Centre To Take Steps To Transfer Unutilized Crowd-fund Amount To Rare Diseases Fund

The Delhi High Court has said that the Centre is expected to take steps for transferring to the rare disease fund the unutilized crowd fund amount, presently kept with Kerala High Court which was raised for treatment of a patient with rare disease who has now died.

Justice Rekha Palli however refused to accept the submission made by Centre which had said that it was not a party in the proceedings before the Kerala High Court.

Asking the Centre and AIIMS to file a status report highlighting the compliance of the orders passed in the matter, the Court listed the matter for further hearing on October 27.

"Even if the Union of India was not a party to proceedings, it was expected that it would take steps to ensure that the amount does not remain unutilised and is transferred to the rare diseases fund," Justice Palli said.

Assurance was also given by ASG Chetan Sharma that appropriate action will be taken within a period of one week.

The Court was hearing a clutch of petitions concerning children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's syndrome. The pleas sought directions to provide them free of cost treatment owing to the reason that the medical treatment involved was very expensive.

Earlier, the Centre had informed the Court that it has set up and made operational an online crowdfunding platform for collecting funds for the treatment of children suffering from rare diseases. 

The development came after the Court, in July, directed the Union Ministry of Health and Family Welfare to immediately launch a dedicated online crowdfunding platform for collecting funds for treatment of children suffering from rare diseases.

The Court had also observed that merely because of the exorbitant price of a drug or treatment, children suffering from a rare disease cannot be deprived of the treatment.

Title: Master Arnesh Shaw v. Union of India & Anr.