The Single Bench of the Delhi High Court in the case of Master Arnesh Shaw vs Union of India & Anr. consisting of Justice Prathiba M. Singh directed that a sum of Rs.5 crores shall be immediately released by the Union of India to AIIMS, Delhi to ensure that the treatment of children suffering from Rare Diseases, where it had already commenced, was not stopped due to lack of funds. The said funds shall be released within two weeks from the date of judgment. Further, the complete account of how the funds were being expended was to be maintained by AIIMS.
Brief Facts:
This batch of petitions was filed by the Petitioners mostly children suffering from Rare Diseases. Their case was that medicines and therapies for the said diseases are exorbitantly expensive. These matters had been heard by the Court from time to time and various directions had been issued for enabling treatment and making medicines available to the Petitioners.
Observations of the Court:
The Bench opined that the matter would have to be referred to the Secretary, Ministry of Health Family Welfare (MH&FW) to decide in respect of clinical trials that were to be conducted for testing the therapies for rare diseases including DMD.
The decision of the Court:
Each of the Petitioners was allowed to approach AIIMS, New Delhi, or the respective Centres of Excellence, closer to their locations, for the commencement of their treatment in terms of the order dated 14th December 2021. It would be the responsibility of the Union of India to ensure that necessary funds were provided to all the Centres of Excellence including AIIMS as and when demanded.
It further directed that a sum of Rs.5 crores shall be immediately released to AIIMS, Delhi to ensure that the treatment of children, where it had already commenced, was not stopped due to lack of funds.
Case Title: Master Arnesh Shaw vs Union of India & Anr.
Coram: Hon’ble Justice Prathiba M. Singh
Case No: W.P.(C) 5315/2020 & connected matters
Advocates for Petitioner: Mr. Rahul Malhotra, Advocate. Ms. Shyel Trehan, Amicus Curiae with Mr. Rohan Poddar, Adv.
Advocates for Respondents: Ms. Nidhi Raman and Mr. Rudra Paliwal, Advocates. Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI. Mr. Ripu Daman Bhardwaj, CGSC for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). Mr. Dharmender Verma & Mr. Abhishek Yadav, Advocates for BIRAC. Dr. Kanika, AIIMS in person.
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