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Synopsis

The Delhi High Court has ordered the Centre to release Rs. 5 crore funds to the All Indian Institute of Medical Sciences (AIIMS), Delhi, to ensure that treatment of children with rare diseases does not halt due to a lack of funds.

A single-judge bench comprising Justice Prathiba M. Singh was hearing a batch of petitions filed mostly by children suffering from rare diseases stating that the medicines and therapies for the said diseases are exorbitantly expensive. In view of the above, the batch has sought directions to the Union of India and its Ministry of Health and Family Welfare, All India Institute of Medical Science, as well as, the GNCTD, to provide continuous and uninterrupted treatment to the petitioners, free of cost.

The court directed the funds to be released within two weeks and that the funds expended shall be maintained by AIIMS, Delhi under the direct supervision of Dr. Kabra, head of the Rare Diseases Committee. “Upon funds being received, the medicines shall be immediately procured by AIIMS and the treatment shall be recommenced”, the court added.

While hearing a batch of petitions, the single-judge bench was apprised that one child suffering from Gaucher was provided medicines by AIIMS till January, thereafter the treatment was stopped. Counsel for AIIMS stated that it was stopped as the funds for the treatment of the patient were exhausted.

The court noted, that AIIMS, Delhi is a recognized as a Centre of Excellence for treating rare diseases and is also the nodal center of the Consortium of Centres of Excellence under the National Policy for Rare Diseases, 2021. Accordingly, the court directed, “a sum of Rs.5 crores shall be immediately released by the Union of India to AIIMS, Delhi so as to ensure that the treatment of children, where it has already commenced, is not stopped due to lack of funds. The said funds shall be released within a period of two weeks from today.”

Additionally, the court directed the Centre to file an affidavit in a week giving the complete information of the funds released from the Rare Diseases Fund to various Centres for Excellence and the number of patients for whom treatment has been approved till date, and listed the matter for further hearing on March 1, 2020.

It is to be noted that earlier, this month the court sought an explanation from the AIIMS on the allegations of its "grossly negligent behavior" for not placing purchase orders of therapeutics for the treatment of rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc.

 "The amount having been released by the Ministry of Health & Family Welfare way back in September 2022, the non-placing of purchase orders/supply orders on M/s Sarepta would be a grossly negligent attitude adopted by the concerned persons at AIIMS. There cannot be any justification for this attitude”, the court said.

Notably, the High Court in December 2022, directed the Centre to release Rs. 5.35 crore to fund clinical trials for the treatment of rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc.

Case Title: Master Arnesh Shaw v. Union of India &Anr. (a batch of petitions)