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Synopsis

The Delhi High Court has recently directed the All India Institute of Medical Sciences (AIIMS) to commence procurement of medicines for patients with complete evaluation as per the fund allocated of Rs. 50 lakhs per patient, in terms of the Rare Diseases Policy.

The bench of 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.

“Upon receipt of these medicines, the administration of the medicines to the patients/petitioners shall commence in an expedited manner”, Justice Singh said.

“In respect of those patients/petitioners who are not amenable to treatment, as submitted by Dr. Kabra, the standard protocol of steroid administration and provision of care shall be commenced”, the court directed.

It also directed, “Both Dr. Kabra and Dr. Sheffali Gulati (who are present virtually) shall ensure that any patient/Petitioner who can be enrolled in approved clinical trials is given an opportunity to get enrolled. They shall make an effort to enroll them, so that continuous treatment can be provided to the patients/Petitioners, if they satisfy the criteria”.

The court sought the final report of the ‘National Rare Diseases’ committee’ on the next date of hearing, i.e., December 7.

The single-judge bench issued the above directions to 91 petitioners.

Taking note of a report submitted by the AIIMS, it stated that out of the total 32 patients, 14 patients were amenable to treatment, 17 patients were not amenable to treatment, and one was under evaluation.

Notably, Justice Singh on February 15, 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.

It is to be noted that earlier this month, the court had 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 had said.

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 connected matters)