Master Arnesh Shaw vs Union of India

Judicial Analysis Court Copy Headnote Facts Arguments Court observation

2024 Supreme(Del) 688

PRATHIBA M. SINGH
Master Arnesh Shaw – Appellant
Versus
Union of India – Respondent

Advocates appeared:
Mr. Rahul Malhotra, Advocate, for the Petitioner.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Asif Ahmed, Advocate, for the Petitioner.
Mr Saurabh Kirpal, Senior Adv and Mr Anish Chawla Advocate, for the Sarepta.
Mr. Kirtiman Singh CGSC, Mr. Waize Ali Noor, Ms. Vidhi Jain & Ms. Anvi Garg Advocate, Advocates, for the UOI.
Mr. Ripudaman Bhardwaj CGSC and Mr. Kushagra Kumar, Ms. Manaswini Kondepudi, Advocate, for the UOI.
Mr. Tanveer Oberoi& Mr. Jaswinder Singh, Advocates, for the (AIIMS).
Mr. Dharmender Verma and Mr. Vishal Singh, Advocates for BIRAC. Dr. Sheffali Gulati, (AIIMS).
Mr Dharmender Verma Advocate, Mr. Vishal Singh Advocate, Mr. Shantanu Garg, Advocate, for the BIRAC.
Mr. Sudarshan Rajan, Mr. Hitain Bajaj and Mr. Mahesh Kumar, Advocates, for the Respondent-3.
Ms. Shyel Trehan, Mr. Rohan Poddar, Ms. Shivalika Rudrabatla, Advocates, for the Respondent.
Mr. Dinesh Kumar and Mr. Prakash Raj Thakur, Advocates for the DGCI.

JUDGMENT

Prathiba M. Singh, J. (Oral) - This hearing has been done through hybrid mode.

2. The present batch of petitions have been filed by the Petitioners who are children suffering from rare diseases. These matters have been heard by the Court from time to time and various directions have been issued for enabling treatment and making medicines available to the Petitioners.

Status of the writ petitioners

3. On 19th January, 2024, AIIMS was directed to submit a chart regarding the status of treatment of each of the Petitioners before this Court. Further, on the said date, notice was issued in the petitions bearing no. W.P.(C) 436/2024 & W.P.(C) 479/2024, and AIIMS was directed to examine the case of these patients, and to place a status report in that regard.

4. Today, vide status report dated 23rd February, 2024, the status of all the petitioners is provided as follows:

14 petitioners have already received treatment upto 50 lakhs under the National Policy for Rare Diseases, 2021 (hereinafter, `NPRD'), and for whom orders have been placed with M/s. Sarepta Therapeutics for further medicines.

2 Petitioners were selected and included in the clinical trials which are currently underway.

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2024 Supreme(Del) 688

PRATHIBA M. SINGHMaster Arnesh Shaw – AppellantVersusUnion of India – Respondent

PRATHIBA M. SINGH
Master Arnesh Shaw – Appellant
Versus
Union of India – Respondent