Commence Procurement Of Medicines For Children With Rare Diseases For Whom Evaluations Are Completed: Delhi High Court To AIIMS

The Delhi High Court has directed the All India Institute of Medical Sciences (AIIMS) to commence the process of procurement of medicines for children with rare diseases, for whom evaluations have been completed and who are amenable to treatment, as per the fund of Rs. 50 lakhs allocated per patient in terms of the Rare Diseases Policy.

Justice Prathiba M Singh took note of a report submitted by AIIMS stating that out of the total 32 patients, 14 patients were amenable to treatment, 17 patients were not amenable to treatment and one 1 was under evaluation.

“For all those patients/Petitioners for whom evaluations have been completed by AIIMS, and are amenable to treatment, AIIMS shall commence the procurement of medicines for the said patients/Petitioners as per the fund allocated of Rs. 50 lakhs per patient, in terms of the Rare Diseases Policy,” the court said.

It added that upon receipt of the medicines for treatment, AIIMS shall commence administration of the medicines to the patients in an expedited manner.

Regarding those patients who were not amenable to treatment, the court said that the standard protocol of steroid administration and provision of care shall be commenced.

Furthermore, Justice Singh also directed two doctors, Dr. Kabra and Dr. Sheffali Gulati, from AIIMS to ensure that any patient who can be enrolled in the 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 said.

It also directed AIIMS to initiate and provide necessary treatment for the patients within a specific timeline.

“Let a timeline in respect of the above directions be placed on record,” the court ordered.

Justice Singh was hearing a batch of pleas concerning the treatment of children suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter's syndrome. The petitions seek free-of-cost treatment for the patients, which is otherwise very expensive.

Justice Singh observed that the nature of the batch of pleas is intrinsically non- adversarial, and it is not the intention of the court to seek deficiencies in actions taken by AIIMS.

“Compliance with the orders of this Court is expected as a part of a collective effort to address the challenges faced by children with rare diseases. Ld. Counsel for AIIMS Mr. Oberoi also agrees that AIIMS also does not intend to frustrate the objectives of the Court’s directions in the previous orders,” the court said.

While listing the matter for further hearing on December 07, the court issued notice on two fresh petitions filed by children suffering from rare diseases seeking directions to the authorities to provide continuous and uninterrupted treatment to the them.

The court had earlier directed the National Rare Diseases Committee, constituted by it, to hold deliberations with companies manufacturing and marketing medicines for Spinal Muscular Atrophy, a genetic rare disease, to explore the possibility of procuring the medicines at a reasonable price.

In May, Justice Singh had constituted a five-member committee so that the National Policy for Treatment of Rare Diseases, 2017 can be implemented in an efficient manner and also to ensure that its benefits reach the ultimate patients.

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

Citation: 2023 LiveLaw (Del) 1060

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