Master Arnesh Shaw v. Union of India & Anr.

Delhi High Court · 10 May 2024 · 2024:DHC:3871
Prathiba M. Singh
W.P.(C) 5315/2020
2024:DHC:3871
other other Significant

AI Summary

Delhi High Court directs AIIMS and government bodies to ensure timely provision of medicines and aids for children with rare diseases, addressing financial and logistical challenges while ongoing negotiations with pharmaceutical companies continue.

Full Text
Translation output
W.P.(C) 5315/2020 & connected matters
HIGH COURT OF DELHI
Date of Decision: 10th May, 2024 (3)
W.P.(C) 5315/2020 & CM APPL. 19189/2020, 4237/2023
MASTER ARNESH SHAW ..... Petitioner
Through: Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
Mr. Asif Ahmed, Advocate. (M:
9560995495)
VERSUS
UNION OF INDIA & ANR. ..... Respondents
Through: Mr Saurabh Kirpal, Sr. Adv and Mr Anish Chawla Adv. for Sarepta.
Mr. Kirtiman Singh CGSC, Mr. Waize Ali Noor, Ms. Vidhi Jain &
Ms. Anvi Garg Adv., Advs for UOI.
Mr. Ripudaman Bhardwaj CGSC and Mr. Kushagra Kumar, Ms. Manaswini Kondepudi, Adv. for UOI.
Mr. Tanveer Oberoi& Mr. Jaswinder Singh, Advs. for (AIIMS).
Mr. Dharmender Verma and Mr. Vishal Singh, Advs. for BIRAC. Dr. Sheffali Gulati, (AIIMS).
Mr Dharmender Verma Adv., Mr. Vishal Singh Adv., Mr. Shantanu Garg Advocate for BIRAC (M:
9625777607).
Mr. Sudarshan Rajan, Mr. Hitain Bajaj and Mr. Mahesh Kumar, Advocates for R-3.
Ms. Shyel Trehan, Mr. Rohan Poddar, Ms. Shivalika Rudrabatla
Mr. Dinesh Kumar and Mr. Prakash Raj Thakur, Advs. for DGCI. (M:
JUDGMENT

9990755693) (IN ALL THE MATTERS) (2) WITH + CONT.CAS(C) 415/2022 & CM APPL. 18280/2022 MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS NATURAL GUARDIAN..... Petitioner (M: 6370344354)

VERSUS

RAJESH BHUSHAN & ORS...... Respondent Through: Mr. Kirtiman Singh CGSC, Mr. Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Adv. for R-2. Mr. Tanveer Oberoi(M:9958935556) and Mr. Jaswinder Singh, Advocate (M:9811232066) Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. (4) WITH + CONT.CAS(C) 678/2024 MASTER RAKSHAN REPRESENTED BY HIS FATHER V. MANIKNANDAN..... Petitioners versus DR.

REMA CHANDRAMOHAN & ANR...... Respondents Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI (5) WITH + CONT.CAS(C) 687/2024 MASTER RAKSHAN REPRESENTED BY HIS FATHER V. MANIKNANDAN..... Petitioners versus SUDHANSH PANT & ORS..... Respondents (6) WITH + W.P.(C) 11610/2017 & CM APPLs. 27637/2018 FSMA INDIA CHARITABLE TRUST..... Petitioner Through: Mr. Ashok Agarwal & Mr. Manoj Kumar, Advs. (M: 9811101923)

VERSUS

UNION OF INDIA AND ANR...... Respondents Through: Mr. Sameer Vashisht, ASC (Civil), GNCTD and Mr. Vanshay Kaul, Adv. for R-2. Mr. Vijay Joshi, Sr. Panel Counsel for UOI. Mr Pravin Anand Mr Shrawan Chopra Ms Prachi Agrawal Mr Achyut Tewari, Advocates for Roche India (M. 860463357) Mr. Tanveer Oberoi, Adv. Mr. Anand Grover, Sr. Advocate with Mr. Saurabh Chauhan, Mr. Varun Jain, Mr. Rohin Bhatt, Ms. Reny Chauhan, Mr. Sadeeq Ur Rahman Advs. along with Ms. Archana Panda, AR. (M:9971540730) (7) WITH + W.P.(C) 2943/2020 & CM APPLs.10227/2020, 6633/2022, 7534/2023 ALISHBA KHAN..... Petitioner versus UNION OF INDIA AND ORS...... Respondents Through: Mr. Anuj Aggarwal, ASC, GNCTD, Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh, Mr. Siddhant Dutt, Advocates for R-2 and 4 (M:9891363718). Mr. Tanveer Oberoi, Adv. for (AIIMS). (8) WITH + W.P.(C) 7756/2023 & CM APPL. 29934/2023 MASTER PUSPENDER THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

UNION OF INDIA & ANR...... Respondent Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (9) WITH + W.P.(C) 8200/2023 & CM APPL. 31454/2023 MASTER DRASHTANT JHALA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

JAYDEEP SINGH JHALA..... Petitioner versus (AIIMS). (10) WITH + W.P.(C) 8947/2023 & CM APPL. 33930/2023 DIVYANSH KARNANI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

RAJESH KUMAR KARNANI..... Petitioner versus UNION OF INDIA & ORS...... Respondent (AIIMS). (11) WITH + W.P.(C) 8948/2023 & CM APPL. 33931/2023 ARJUN SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SANJEEV SHARMA..... Petitioner versus (AIIMS). (12) WITH + W.P.(C) 8973/2023 & CM APPL. 34025/2023 ADVIK RAYAKAWAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PIYUSH RAYAKAWAR..... Petitioner versus Mr. Neeraj, SPC along with Mr. Vedansh Anand and Mr. Mahesh Kumar Rathore, Advs. UOI. (13) WITH + W.P.(C) 8986/2023 & CM APPL. 34083/2023 LAKSHAY AGARWAL..... Petitioner versus Through: Mr. Anurag Ahluwalia, CGSC, Mr. Abhigyan Siddhant, Advocate. (AIIMS). (14) WITH + W.P.(C) 8996/2023 & CM APPL. 34122/2023 ADARSH SONI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VIJAY KUMAR SONI..... Petitioner versus Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI (AIIMS). Mr Vedansh Anand, Advocates for UOI. Mr Abhishek Sharma, Miss Kritya Sinha, Mr. Pranshul Kulshreshtha, Advs. for R-5. (M: 8294621791) (15) WITH + W.P.(C) 10782/2020 & CM APPL.33828/2020 AVIRAJ GARG, AGE 4 YEARS, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

ABHINAV GARG..... Petitioner versus Through: Mr. Siddharth Khatana, Adv. for R1-

1. (M- 9811132326) Ms. Amrita Prakash, CGSC (AIIMS). Ms. Anvi Garg Adv., Advs for UOI.s (16) WITH + W.P.(C) 322/2021 & CM APPL. 812/2021 KESHAV SHARMA AGE 12 YEARS THROUGH HIS NEXT FRIEND AND NATURAL FATHER SANJEEV KUMAR..... Petitioner versus Through: Mr. Ajay Digpaul and Ms. Ishita Pathak, Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI. (AIIMS). (17) WITH + W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022 MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner versus (AIIMS). (18) WITH + W.P.(C) 1511/2021 & CM APPLs. 4331/2021, 8616/2022 MASTER KENIT JHAWAR @ KESHAV..... Petitioner versus Through: Mr. Rishabh Sahu, Central Govt Sr. Counsel with Mr Sameer Sharma, Adv. for UOI. Mr. Ghanshyam Mishra, Adv. for R-1. (M: 9899794006) (AIIMS). (19) WITH + W.P.(C) 1611/2021 & CM APPL. 4600/2021 LAKSHYA KUMAR GOYAL, 8 YRS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

26,047 characters total

VERSUS

Through: Ms. Bharathi Raju, Sr. Panel Counsel with Mr. Rohit Singh, for UOI. (M:9868895906) (AIIMS). (20) WITH + W.P.(C) 3662/2021 & CM APPLs. 11103/2021, 25590/2021, 32504/2021 PAYEL BHATTACHARYA..... Petitioner Through: Mr. Aditya Chatterjee and Mr. Ishaan Karki, Advocates.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Anuj Aggarwal, ASC, GNCTD, Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh, Mr. Siddhant Dutt Advocates for R-2 (M:9891363718). (AIIMS). (21) WITH + W.P.(C) 3682/2021 & CM APPL.11153/2021 HARSHIT SONI, 16 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

TIKAM CHAND SONI..... Petitioner versus Through: Mr. T.P. Singh, Sr. Central Govt. Counsel for R-1 (M:9971579687). (AIIMS). (22) WITH + W.P.(C) 3689/2021 & CM APPL.11179/2021 DHANANJAY BHARDWAJ, 11 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. AMIT KUMAR..... Petitioner versus Through: Mr. Sanjeev Uniyal and Mr. Dhawal Uniyal with Mr. Satyam Pandey Advs for R-1 (M:9560806614). (AIIMS). (23) WITH + W.P.(C) 3706/2021 & CM APPL. 11229/2021 KHUSHWANT BHARDWAJ, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

NIKHIL BHARDWAJ..... Petitioner versus Through: Mr. Sanjib Kumar Mohanty, Sr. Panel Counsel with Ms. Anushka Jakhodia, Mr. Subesh K. Sahood, Adv. for R-1. (AIIMS). (24) WITH + W.P. (C) 3707/2021 & CM APPL. 11230/2021 AARAV GARG, 5 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. VIVEK..... Petitioner versus Through: Mr. Siddharth Khatana, Advocate for UOI. (M:9811132326) (AIIMS). (25) WITH + W.P.(C) 3729/2021 & CM APPL.11269/2021 MANISH, 8 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PHOOL CHAND JAT & ANR.... Petitioners versus (AIIMS). (26) WITH + W.P.(C) 3737/2021 & CM APPL. 11277/2021 SHOURYA MARU, 7 YEARS OLD, FATHER SH.

KAMAL KUMAR MARU..... Petitioner versus Through: Mr. Ranvir Singh (CGSC) for R-1. (M:9818071061) (AIIMS). (27) WITH + W.P.(C) 3859/2021 & CM APPL. 11647/2021 SIDDHARTH SWARNKAR, 9 YEARS OLD, FATHER SH.

DINESH KUMAR SWARNKAR..... Petitioner versus Through: Mr. Anuj Aggarwal, ASC, GNCTD with Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh Advocates for R-1 to 5 (M:9891363718). (AIIMS). (28) WITH + W.P.(C) 4045/2021 & CM APPL. 12213/2021 UTKARSH INDRAJIT PAWAR, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

INDRAJIT DAMAR PAWAR..... Petitioner versus Through: Mr. Sanjeev Sabharwal, Sr. Panel Counsel with Ms. Shweta, Advocate for UOI. Mr. Harish Kumar Garg and Ms. Palak Gupta, Ms. Khushboo Sharma, Advocates for UOI (M:9810150029). (AIIMS). (29) WITH + W.P.(C) 4067/2021 & CM APPL. 12306/2021 ANSHU, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

NARENDRA KUMAR YADAV …... Petitioner versus (AIIMS). (30) WITH + W.P.(C) 4259/2021 & CM APPL. 12948/2021 ISHAAN, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

RAJVIR SINGH..... Petitioner versus (AIIMS). Mr. Ripudam Bhardwaj, CGSC with Mr. Vinod Tiwari, Adv. for R-1 & 3. (31) WITH + W.P.(C) 4304/2021 & CM APPL. 13108/2021 TANAV HANDOO, 6 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. AMIT HANDOO..... Petitioner versus Through: Mr. Satya Ranjan, (Sr. Panal Counsel) with Mr. Kautilya Birat, Advs for UOI. (AIIMS). (32) WITH + W.P.(C) 4551/2021 & CM APPL. 13949/2021 SHAURYA DAHIYA, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SATBIR DAHIYA..... Petitioner versus Through: Mr. Avnish Singh, SPC Along with Mr. Mahendra Vikram Singh & Ms. Kanchan Kumari, Advocate. (M:8826437138) (AIIMS). Mr. Anurag Ahluwalia, CGSC with Tarveen Singh Nanda, Govt. Pleader. (M: 8826437138) (33) WITH + W.P.(C) 4812/2021 & CM APPL. 14844/2021 NIKHIL YOGENDERSINGH CHOUDARY, 17 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

YOGENDERSINGH P CHOUDARY..... Petitioner versus Through: Mr. Ranvir Singh (CGSC) for R-1. (AIIMS). (34) WITH + W.P.(C) 5394/2021 & CM APPL. 16683/2021 UDAYVEER SINGH GULERIA, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

RAMESH GULERIA..... Petitioner versus (AIIMS). (35) WITH + W.P.(C) 5395/2021 & CM APPL. 16686/2021, 63399/2023 MASTER AYUSHMAN CHATURVEDI..... Petitioner Through: Mr. Anurag Ojha, Advocate. Mr. Deepak Somani, Advocate.

VERSUS

Through: Mr. Niraj Kumar, Sr. Central Govt. Counsel for UOI. Mr. Parth Goyal, Adv. for Mr. Jawahar Raja, ASC(C) GNCTD. (AIIMS). (36) WITH + W.P.(C) 9684/2021 AADHYAN JAISWAL 11 YEARS OLD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH ANIL KUMAR JAISWAL..... Petitioner versus Through: Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Adv. for R-2. (AIIMS). (37) WITH + W.P.(C) 14317/2021 & CM APPLs. 45148/2021, 14521/2023 SHREYANSH AARAV, 11 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

KANCHAN KAMINI..... Petitioner versus (AIIMS). (38) WITH + W.P.(C) 1182/2022 & CM APPL. 3442/2022 INSHA MINOR THROUGH HER NEXT FRIEND AND NATURAL FATHER SH IRSHAD AHMAD SOFI..... Petitioner versus Through: Mr. Sanjeev Uniyal & Mr. Dhawal Uniyal with Mr. Satyam Pandey, Ms. Ritagya Mishra Advs for R-1. (M:9560806614) Mr. Rishikesh Kumar ASC-GNCTD, with Mr Aditya Raj, Mr. Muhammad Zaid, Mr. Sheenu Priya, Mr. Sudhir Kumar Shukla & Mr Sumit Choudhary, (Advocates) (AIIMS). (39) WITH + W.P.(C) 1054/2023 and CM APPL. 4164/2023 MASTER TUSHAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. JAI PRAKASH..... Petitioner versus Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI. Mr. Hardik Bedi, GP for UOI. (AIIMS) (40) WITH + W.P.(C) 1079/2023 and CM APPL. 4248/2023 MASTER RUDRA PAWAR THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT. ANU VISHNOI..... Petitioner versus Dr. Nabendu Sekhar Chatterjee, from ICMR. Mr. Hardik Bedi, GP for UOI (41) WITH + W.P.(C) 2614/2023 KARAN, 14 YEARS OLD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Through: Mr. Nitinjya Chaudhry, Sr Panel Counsel with Mr. Abhishek, GP, Mr. Rahul Mourya, Adv. (M- 9810103680). Mr. Abhishek Khanna, Adv. for R-1. (AIIMS) (42) WITH + W.P.(C) 4495/2023 & CM APPL.17190/2023 PARAS JAIN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SANDEEP JAIN..... Petitioner versus Through: Mr. Raj Kumar, Advocate, SPC, UOI. Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. (43) WITH + W.P.(C) 4502/2023 & CM APPL.17238/2023 SHREYANSH VERMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHEERAJ KANT VERMA..... Petitioner versus Through: Mr. Raj Kumar Yadav, Ms. Nitya Sharma, Ms. Jasmine Sheikh Advocate for UOI. (M:9818836222) (44) WITH + W.P.(C) 4526/2023 & CM APPL.17321/2023 MASTER LAKSHYAVED KALISHARAN THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SHILPA RAMESH …. Petitioner versus Mr. Virender Pratap Singh Charak and Ms.Shubhra Parashar Advocates for UOI. Ms. Shubhra Parashar, Mr. Yash Hari Dixit, Mr. Akshay Kumar, Mr. Pushpender Singh Charak, Ms. Pinky Yadav, Advs. (M: 9958458448) (45) WITH + W.P.(C) 4535/2023 & CM APPL.17331/2023 MASTER CHINMAY BARUPAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

ASHOK KUMAR BARUPAL..... Petitioner versus Ms Monika Arora ( CGSC) & Ms. Jyoti Tiwari, Adv. for UOI. (46) WITH + W.P.(C) 4536/2023 & CM APPL.17333/2023 MADHAV SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

NEERAJ SHARMA..... Petitioner versus Through: Mr. Sushil Raaja, SPC, UOI. (47) WITH + W.P.(C) 4538/2023 & CM APPL.17337/2023 SANDEEP KALIA..... Petitioner versus Mr. Mukul Singh CGSC with Mr. Majjari Umesh, Ms. Ira Singh, Adv. for R-1. (M: 9971359513) (48) WITH + W.P.(C) 4539/2023 & CM APPL.17340/2023 RAJVEER SRIVASTAVA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

RAJESH KUMAR SRIVASTAVA..... Petitioner versus Through: Mr Mukul Singh (CGSC) with Ms. Ira Singh, Adv. for UOI. (M:

9971359512) Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (49) WITH + W.P.(C) 4591/2023 & CM APPL. 17548/2023 VANSH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VIPIN KUMAR..... Petitioner versus Ms Monika Arora (CGSC), Mr. Kushal Mr. Subhrodeep Saha Mr Yash Tyagi, Adv & Mr Subhrodeep, Adv. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (50) WITH + W.P.(C) 5102/2023 & CM APPL.19968/2023 PRANSHU NAMDAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARIXIT NAMDHAR..... Petitioner versus Through: Ms. Ritu Reniwal (SPC UOI). Ms Prerna Dhall & Mr Ripu Dhiman, Advocates (M- 8920466138) (51) WITH + W.P.(C) 5726/2023 & CM APPL. 22436/2023 MASTER HARENDER THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SUNDER SINGH & ANR...... Petitioners versus Through: Mr. Neeraj, SPC along with Mr. Mr. Tanveer Oberoi, Advocate for (AIIMS). Advocates for R-4. (52) WITH + W.P.(C) 5753/2023 & CM APPL. 22528/2023 VINAY THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MEHAR SINGH..... Petitioner versus Through: Mr Atul Sai Krishna Senior Panel Counsel, Mr Hardik Bedi GP. (M:

8010414123) Advocates for R-2. Mr Atul Krishna, SPC with Mr Hardik Bedi, GP for R[1] (53) WITH + W.P.(C) 6089/2023 & CM APPL. 23902/2023 MASTER SAIANSH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

AVTAR SINGH MALHOTRA. Petitioner versus Through: Mr. Kirtiman Singh CGSC, Mr Hardik Bedi GP Mr. Waize Ali Noor, Ms. Vidhi Jain & Ms. Anvi Garg Adv., Advs for UOI. Mr Atul Sai Krishna Senior Panel Counsel, Mr Hardik Bedi GP. (M:

8010414123) Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. (54) WITH + W.P.(C) 7549/2023 and CM APPL. 29273/2023 MASTER CHUNNU YADAV THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SANJEEV KUMAR..... Petitioner versus Mr. Gokul Sharma (GP) for R-1. (M-

9045885304) Ms Prerna Dhall & Mr Ripu Dhiman, Advocates (M- 8920466138) (55) WITH + W.P.(C) 7553/2023 and CM APPL. 29299/2023 MASTER HARSHIT PAWAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PRAVEEN KUMAR..... Petitioner versus (56) WITH + W.P.(C) 7644/2023 and CM APPLS. 29628-29/2023 MASTER SATYAKI ADAK THROUGH HIS NATURAL GUARDIAN..... Petitioner versus Through: Mr. Ripudaman Bhardwaj, CGSC with Mr. Kushagra Kumar, and Mr. Abhinav Bhardwaj, Advs. for UOI. and Mr. Jaswinder Singh, Advocate. Mr. Ankit Verma, Advocate. (57) WITH + W.P.(C) 10031/2023 and CM APPL. 38666/2023 ADITYA KUMAR YADAV THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. PREM SHANKAR..... Petitioner Mr. Rahul Malhotra, Advocate.

VERSUS

Mr. Ripudaman Bhardwaj, CGSC (58) WITH + W.P.(C) 10063/2023 and CM APPL. 38727/2023 SUMIT KUMAR SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

AMARJIT SINGH..... Petitioner versus Mr Vedansh Anand, Advocates for UOI. (59) WITH + W.P.(C) 10064/2023 and CM APPL. 38728/2023 ADITYA SONI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MUKESH KUMAR SONI..... Petitioner versus Mr. Ripudaman Bhardwaj, CGSC (60) WITH + W.P.(C) 10606/2023 & CM APPL. 41165/2023 UMANAND KUMAR SONI THROUGH HIS NEXT FRIEND AND NATURAL GRANDFATHER SH.

NANDU PRASAD SONI..... Petitioner versus Through: Mr. Vineet Dhanda, CGSC (61) WITH + W.P.(C) 10867/2023 & CM APPL. 42110/2023 PARTH KAMBOJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARDEEP KUMAR..... Petitioner versus (62) WITH + W.P.(C) 10870/2023 & CM APPL. 42114/2023 PARV INSAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

WAZIR SINGH..... Petitioner versus (63) WITH + W.P.(C) 12222/2023 & CM APPL. 48011/2023 SAKSHAM JANGLA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus (64) WITH + W.P.(C) 13172/2023 & CM APPL. 52098/2023 TANUJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER MR.

SUDHIR KUMAR & ANR...... Petitioners versus (65) WITH + W.P.(C) 13173/2023 & CM APPL. 52099/2023 AMAN MEENA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SAMAY SINGH MEENA..... Petitioner versus Through: Mr. Ripudaman Bhardwaj CGSC and Mr. Kushagra Kumar, Ms. Manaswini Kondepudi, Advs. for UOI. (66) WITH + W.P.(C) 13174/2023 & CM APPL. 52100/2023 HARSHIT RAJPUT THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

MEENA RAJPUT..... Petitioner (67) WITH + W.P.(C) 13175/2023 & CM APPL. 52102/2023 PARMARTH KAPOOR THROUGH HIS NEXT FRIEND AND NATURAL MOTHER MS.

SURABHI BHARDWAJ..... Petitioner versus (68) WITH + W.P.(C) 13179/2023 & CM APPL. 52133/2023 MANVIK KHANGWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus (69) WITH + W.P.(C) 13180/2023 & CM APPL. 52134/2023 GAURAV KAPOOR..... Petitioner versus (70) WITH + W.P.(C) 13186/2023 & CM APPL. 52141/2023 SOUMYA MISHRA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VINOD KUMAR MISHRA..... Petitioner versus (71) WITH + W.P.(C) 13187/2023 & CM APPL. 52142/2023 SUMIT VERMA THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

KRISHNA DEVI..... Petitioner versus (72) WITH + W.P.(C) 13188/2023 & CM APPL. 52145/2023 VIKASH MEENA..... Petitioner versus (73) WITH + W.P.(C) 13190/2023 & CM APPL. 52148/2023 REHAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VINAY KAMAL..... Petitioner versus (74) WITH + W.P.(C) 13191/2023 & CM APPL. 52149/2023 YASH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. MONU..... Petitioner (75) WITH + W.P.(C) 13192/2023 & CM APPL. 52152/2023 AARUSH PRITHWANI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

BHISHAM PRITHWANI..... Petitioner versus (76) WITH + W.P.(C) 13193/2023 & CM APPL. 52153/2023 MANAV PALSANIA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

AJAY KUMAR PALSANIA..... Petitioner versus (77) WITH + W.P.(C) 13196/2023 & CM APPL. 52158/2023 HIMANSHU SHARAMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VISHAL SHARAMA..... Petitioner versus (78) WITH + W.P.(C) 13197/2023 & CM APPL. 52159/2023 MRADUL MISHRA..... Petitioner versus (79) WITH + W.P.(C) 13236/2023 & CM APPL. 52311/2023 YASH RAJ SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHARMENDER SINGH..... Petitioner (80) WITH + W.P.(C) 13237/2023 & CM APPL. 52314/2023 PARMEET SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

KULDEEP SINGH..... Petitioner versus (81) WITH + W.P.(C) 13239/2023 & CM APPL. 52319/2023 MOHIT THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SURENDER SINGH..... Petitioner versus (82) WITH + W.P.(C) 13240/2023 & CM APPL. 52321/2023 MOHAMMAD ARSHAD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MOHAMMAD HANIF..... Petitioner versus (83) WITH + W.P.(C) 13259/2023 & CM APPL. 52378/2023 SAHIL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MAHESH YADAV..... Petitioner versus (84) WITH + W.P.(C) 13260/2023 & CM APPL. 52379/2023 VISHWAS GOYAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MANGLESH GOYAL..... Petitioner versus Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. (85) WITH + W.P.(C) 13304/2023 & CM APPL. 52496/2023 VIHAAN GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

GAURAV KUMAR..... Petitioner versus (86) WITH + W.P.(C) 13379/2023 & CM APPL. 52805/2023 SAMEER LAMBA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. HANSRAJ..... Petitioner versus (87) WITH + W.P.(C) 13389/2023 & CM APPL. 52855/2023 SALMAN KHAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

HUSAIN ALI..... Petitioner versus Through: Mr. Shubham Prasad, G.P. for UOI. (M: 9712533333) (88) WITH + W.P.(C) 13417/2023 & CM APPL. 53006/2023 HENIL PATEL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PANKAJ KUMAR PATEL..... Petitioner versus Mr. Shubham Prasad, G.P. for UOI. (M: 9712533333) (89) WITH + W.P.(C) 13449/2023 & CM APPL. 53114/2023 HENILKUMAR PRAJAPATI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

KANAIYALAL PRAJAPATI..... Petitioner versus Through: Mr. Shashank Garg, CGSC for UOI with Mr. Vanshul Pali, Adv. (M:

9711552649) (90) WITH + W.P.(C) 13453/2023 & CM APPL. 53123/2023 TIRTH RAVI KHAIRNAR THROUGH HIS NEXT FRIEND AND NATURALFATHER SH.

KHAINAR RAVI BHAI..... Petitioners versus (91) WITH + W.P.(C) 13456/2023 & CM APPL. 53134/2023 RUDRA KIRTI KUMAR PATEL THROUGH HIS NEXT FRIEND AND NATURALFATHER SH.

KIRTI KUMAR HIRABHAI PATEL..... Petitioners versus (92) WITH + W.P.(C) 13469/2023 & CM APPL. 53236/2023 JEET GOSAI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PRAGNESHGIRI PRAVINGIRI GOSAI..... Petitioners versus (93) AND + W.P.(C) 13475/2023 ANUJ KUMAR..... Petitioners versus Ms Seema Singh, Adv. UOI R[1]. (M:

8588871365) Mr. Shashank Garg, CGSC with Mr. Vanshul Pali, Adv. for R-1. (94) WITH + W.P.(C) 14141/2023 & CM APPL. 55947/2023 TAKSH KAUSHIK THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH VED PRAKASH..... Petitioner versus Through: Mr. Neeraj, SPC along with Mr. (95) WITH + W.P.(C) 15263/2023 & CM APPL. 61134/2023 MOHAMMAD AYAAN SHEIKH THROUGH HIS NEXT FRIEND AND NATURAL MOTHER MRS.

AYESHA SHEIKH..... Petitioner versus Through: Mr. Tanveer Oberoi(M:9958935556) (96) WITH W.P.(C) 15301/2023 & CM APPL. 61316/2023 SHRESHTH SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHEERAJ SHARMA..... Petitioner versus (97) WITH W.P.(C) 15302/2023 & CM APPL. 61317/2023 SHIVAM THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

SWATI LOHIA..... Petitioner versus (98) WITH W.P.(C) 15315/2023 & CM APPL. 61386/2023 NIKUNJ GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

ASHWANI GUPTA..... Petitioner versus (99) WITH W.P.(C) 15334/2023 & CM APPL. 61502/2023 DEVANSH AGARWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

CHANDRAPRAKASH AGARWAL..... Petitioner versus Mr. Anurag Ahluwalia, CGSC, for R- (100) WITH W.P.(C) 15336/2023 & CM APPL. 61505/2023 RAHUL..... Petitioner versus Ms. Purva Chugh & Ms. Pooja Arora, Advs. (101) WITH W.P.(C) 15618/2023 & CM APPL. 62576/2023 KULDEEP SINGH NARUKA & ANR...... Petitioners versus Through: Ms. Pratima N Lakra CGSC with Vanya Bajaj, Advs. (M. 9968324260) (102) WITH W.P.(C) 15639/2023 & CM APPL. 62620/2023 KARAN SONI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

JUGAL KISHOR SONI AND ANR..... Petitioners versus Ms. Pratima N Lakra CGSC with Ms Kashish G Baweja, Advocate. (103) WITH + W.P.(C) 14150/2023 & CM APPL. 55962/2023 TANVEER SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DEEPAK SHARMA..... Petitioners versus Through: Mr Vedansh Anand, Advocates for UOI. (104) WITH W.P.(C) 16267/2023 & CM APPL. 65509/2023 PRINCE PAREEK THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PANKAJ PAREEK..... Petitioners (105) AND W.P.(C) 16361/2023 & CM APPL. 65805/2023 SARANSH KUMAR THROUGH HIS NEXT SH.

SATISH KUMAR MANDAL..... Petitioners versus (106) AND W.P.(C) 55/2024 & CM APPL. 187/2024 BUSHRA KHAN THROUGH HER NEXT SH.

ASHRAT ALI KHAN..... Petitioner versus (107) AND W.P.(C) 436/2024 & CM APPL. 2013/2024 VIKASH KUMAR THROUGH HIS NEXT SH. SANDEEP..... Petitioner versus (108) AND W.P.(C) 479/2024 & CM APPL. 2128/2024 PARTH SAH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. RAMANAND..... Petitioner versus Through: None. CORAM: JUSTICE PRATHIBA M. SINGH Prathiba M. Singh, J. (Oral)

1. 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.

2. Final arguments have commenced in these matters. Ms. Shyel Trehan, ld. Amicus Curiae has commenced her submissions. Today, at the outset, she highlighted certain difficulties faced by the Petitioners, and their guardians in accessing the required medicines for treatment. Some of the challenges include financial support for Petitioners and addressing logistical challenges for patients with rare diseases.

3. It is submitted by the ld. Amicus on behalf of the Petitioner-Master Ayushman Chaturvedi, in W.P.(C) No. 5395/2021, that the State Government of Uttar Pradesh has released a sum of Rs. 5 lakhs to AIIMS for person with disabilities. This amount is stated to have been received by AIIMS. Accordingly, Dr. Madhulika Kabra is requested to examine the Petitioner and procure any necessary aids and equipment, including a motorised wheelchair, and provided to him expeditiously within a period of ten days.

4. In some cases, patients suffering from rare diseases who reside outside of Delhi have expressed through their family members that it is quite inconvenient for them to travel every week to receive infusions. Dr. Kabra has reported that she is coordinating with the Medical Superintendent, AIIMS and other departmental officials to explore whether medications could be dispatched directly to a local hospital or clinic or Centres of Excellence (CoEs) for infusion. Dr. Kabra is authorised to take necessary steps she deems necessary to facilitate this process for these patients. Let a status report be filed in this regard before the next date of hearing.

5. This Court has been apprised that, in terms of the previous orders of this Court dated 26th February,2024 and 22nd March, 2024, M/s. Sarepta Therapeutics has supplied medicines for the 14 patients through AIIMS, New Delhi. However, as per ld. Amicus, the supply would run out by mid- July.

6. Vide order dated 22nd March, 2024, it was directed as follows: “In the meantime, let the next meeting be scheduled between the NRDC and M/s. Sarepta Therapeutics as per the convenience of the committee members and let the same be communicated to the representatives of M/s. Sarepta Therapeutics.”

7. With regard to M/s. Sarepta Therapeutics, a proposal is stated to have been made by the National Rare Diseases’ Committee yesterday, i.e., 9th May, 2024. Mr. Anish Chawla, ld. Counsel representing M/s. Sarepta Therapeutics, submits that he wishes to seek instructions on providing a written response to the National Rare Diseases’ Committee. However, at this stage, it appears to him that the offer made by the National Rare Diseases’ Committee may not be acceptable.

8. List on 27th May, 2024 for final hearing.

9. These are part-heard matters.

PRATHIBA M. SINGH JUDGE MAY, 10 2024 MR/Rahul/dn