Delhi HC directs AIIMS to initiate procurement of medications for children with rare diseases

New Delhi: The Delhi High Court has directed All India Institute of Medical Sciences (AIIMS) to initiate procurement of medications for the patients who have undergone evaluations and are eligible for treatment, in accordance with the Rare Diseases Policy's allocated fund of Rs 50 lakhs per patient.

While hearing the case in Hybrid mode, a single bench of Justice Prathiba M Singh took note of patients who were open to treatment and those who were not. This was in accordance with the court's earlier order on October 13 for the institute to evaluate the patients' situations and provide a detailed report.

Following this, the institute submitted a report 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. Upon receipt of these medicines, the administration of the medicines to the patients/Petitioners shall commence expeditiously," said the court.

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In addition to this, the court has issued more directions in the following steps:

1. 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.

2. In addition, 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 try to enrol them so that continuous treatment can be provided to the patients/Petitioners if they satisfy the criteria.

3. In respect of the above, AIIMS shall initiate and provide the necessary treatment for the patients/Petitioners within a specific timeline. Let a timeline in respect of the above directions be placed on record. 

The present batch of 91 writ petitions was filed by the Petitioners who are children suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter's syndrome. The case of the Petitioners is that medicines and therapies for the said diseases are exorbitantly expensive and if the same are not made available, the health and physical well-being of these children would be severely jeopardised. The petitions seek free-of-cost treatment for the patients, which is otherwise very expensive.

Subsequently, the company-M/s Sarepta Therapeutics has agreed to provide their therapy free of charge for 14 children, who have already been administered treatment, covering three months of therapy. Accordingly, as these patients have already commenced treatment, M/s Sarepta Therapeutics has committed, as per the communication received by the NDRC, to continue treating these patients with Duchenne muscular dystrophy (DMD) for the next three months, and to supply the medication free of cost during this period. 

"In view of this development, Dr Madhulika Kabra from AIIMS, who is present virtually, is requested to place the order with M/s Sarepta Therapeutics and expedite the procurement of the medicines for these 14 patients, ensuring that their treatment may be resumed. Insofar as a permanent solution for these children is concerned, the NRDC is still working on arriving at a permanent solution. It is directed that Dr Kabra shall place the order for the products/therapies with M/s. Sarepta Therapeutics within one week for these 14 children with M/s Sarepta Therapeutics," the court said.

Furthermore, Justice Singh has observed that the nature of the batch of pleas is non-adversarial, meaning that it doesn't involve a dispute or conflict between opposing parties. The court's intention is not to seek deficiencies in the actions taken by AIIMS (All India Institute of Medical Sciences).

"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.

The court has listed the matter for further hearing on December 7 and has issued notice on two fresh petitions filed by children suffering from rare diseases. These new petitions seek directions to the authorities to provide continuous and uninterrupted treatment to these children.

"Irrespective of any communication that may have been issued, since these are two children who need the MPS II (‘Hunter Syndrome, Attenuated Type’) treatment, AIIMS is directed to continue their treatment till further orders of this Court, from the funds received from the Government of India. The health of these children cannot be compromised in this manner," the court added.

To view the official order click on the link below:

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