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Judgment
Prathiba M. Singh J. (Oral)
This hearing has been done through hybrid mode.
It is submitted by Ms. Shyel Trehan, ld. Amicus Curiae that the Petitioners in W.P.(C )10782/2020 & W.P.(C) 3737/2021 i.e., Master Aviraj Garg, and Master Shaurya Maru have been enrolled in Sarepta Therapeutics trials.
Medicine doses had been procured for 14 DMD patients and the administration of those doses had also started. However, funds qua the said children are stated to have been exhausted now.
Ms. Trehan, ld. Counsel points out that insofar as the release of Rs.5 crores is concerned, an LPA has been filed by the Union of India which was listed before the Division Bench today. The same LPA is now listed on 25th April, 2023, however, there is no stay which has been granted.
On behalf of ICMR, Dr. Nabendu Sekhar Chatterjee from ICMR is present in Court, who submits that ICMR is willing to fund the on-site trials directly. However, the manufacturing of the drug would have to be carried out by the company concerned and the cost for the same has to be borne by the said company.
Today, the Court is being held virtually. The matter would require detailed hearing, inasmuch as the National Consortioum’s report has also been placed on record.
In view of the submission of Dr. Nabendu Sekhar Chatterjee, let Hanugen Therapeutics place on record its affidavit as to whether it can fund the manufacturing of drugs or not by the next date of hearing.
In addition, Ms. Trehan, ld. Counsel submits that a consent form has been made to be signed by the parents of the patients by AIIMS to the effect that only a sum of Rs.50 lakhs worth of medicines would be provided. Let AIIMS file an affidavit explaining this position.
List on 3rd May, 2023 at 3:30 pm.