9560995495 v. Union of India & Anr

Delhi High Court · 12 Jul 2024 · 2024:DHC:5227
Prathiba M. Singh
W.P.(C) 5315/2020
2024:DHC:5227
constitutional other Significant

AI Summary

The Delhi High Court directed coordinated diagnosis and uninterrupted treatment for children with rare diseases, allowing examination at AIIMS Delhi and mandating detailed reporting under the National Rare Diseases Policy 2021.

Full Text
Translation output
W.P.(C) 5315/2020 & connected matters
HIGH COURT OF DELHI
Date of Decision: 12th July, 2024 (5)
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 17:44 MATTERS) (4) 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. (6) WITH + CONT.CAS(C) 678/2024 MASTER RAKSHAN REPRESENTED BY HIS FATHER V. MANIKNANDAN..... Petitioner Through:

VERSUS

REMA CHANDRAMOHAN & ANR...... Respondents Through: (7) WITH + CONT.CAS(C) 687/2024 MASTER RAKSHAN REPRESENTED BY HIS FATHER V. MANIKNANDAN..... Petitioner Through:

VERSUS

SUDHANSHP PANT & ORS...... Respondents Through: 17:44 (8) WITH + W.P.(C) 11610/2017 & CM APPL.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) (9) 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 17:44 (M:9891363718). Mr. Tanveer Oberoi, Adv. for (AIIMS). (10) 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). (11) 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). (12) WITH + W.P.(C) 8947/2023 & CM APPL. 33930/2023 DIVYANSH KARNANI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

UNION OF INDIA & ORS...... Respondent (AIIMS). (13) 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). (14) WITH + W.P.(C) 8973/2023 & CM APPL. 34025/2023 ADVIK RAYAKAWAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

33,173 characters total

PIYUSH RAYAKAWAR..... Petitioner versus Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI Mr. Neeraj, SPC along with Mr. Vedansh Anand and Mr. Mahesh Kumar Rathore, Advs. UOI. 17:44 (15) WITH + W.P.(C) 8986/2023 & CM APPL. 34083/2023 LAKSHAY AGARWAL..... Petitioner versus Through: Mr. Anurag Ahluwalia, CGSC, Mr. Abhigyan Siddhant, Advocate. (AIIMS). (16) 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 (AIIMS). Mr Vedansh Anand, Advocates for UOI. Mr Abhishek Sharma, Miss Kritya Sinha, Mr. Pranshul Kulshreshtha, Advs. for R-5. (M: 8294621791) (17) WITH + W.P.(C) 10782/2020 & CM APPL.33828/2020 AVIRAJ GARG, AGE 4 YEARS, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

1. (M- 9811132326) Ms. Amrita Prakash, CGSC (AIIMS). Ms. Anvi Garg Adv., Advs for UOI.s (18) 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). (19) WITH + W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022 MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner 17:44

VERSUS

(AIIMS). (20) 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). (21) WITH + W.P.(C) 1611/2021 & CM APPL. 4600/2021 LAKSHYA KUMAR GOYAL, 8 YRS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VIPIN KUMAR.... Petitioner Mr. Rahul Malhotra, Advocate. 17:44 Through: Ms. Bharathi Raju, Sr. Panel Counsel with Mr. Rohit Singh, for UOI. (M:9868895906) (AIIMS). (22) 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). (23) WITH + W.P.(C) 3682/2021 & CM APPL.11153/2021 HARSHIT SONI, 16 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Through: Mr. T.P. Singh, Sr. Central Govt. Counsel for R-1 (M:9971579687). (AIIMS). (24) 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). (25) WITH + W.P.(C) 3706/2021 & CM APPL. 11229/2021 KHUSHWANT BHARDWAJ, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Through: Mr. Sanjib Kumar Mohanty, Sr. Panel Counsel with Ms. Anushka Jakhodia, Mr. Subesh K. Sahood, Adv. for R-1. (AIIMS). (26) 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). (27) WITH + W.P.(C) 3729/2021 & CM APPL.11269/2021 MANISH, 8 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

KAMAL KUMAR MARU..... Petitioner versus Through: Mr. Ranvir Singh (CGSC) for R-1. (M:9818071061) (AIIMS). (29) 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 17:44 Suri and Ms. Arshya Singh Advocates for R-1 to 5 (M:9891363718). (AIIMS). (30) 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). (31) WITH + W.P.(C) 4067/2021 & CM APPL. 12306/2021 ANSHU, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

(AIIMS). (32) 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. (33) 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. 17:44 (AIIMS). (34) 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) (35) 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 17:44 Through: Mr. Ranvir Singh (CGSC) for R-1. (AIIMS). (36) 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). (37) 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). 17:44 (38) 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). (39) 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). 17:44 (40) 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). (41) 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. 17:44 Mr. Hardik Bedi, GP for UOI. (AIIMS) (42) 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 (43) 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). 17:44 Mr. Abhishek Khanna, Adv. for R-1. (AIIMS) (44) 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. (45) 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) 17:44 (46) 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) (47) 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 17:44 Ms Monika Arora ( CGSC) & Ms. Jyoti Tiwari, Adv. for UOI. (48) 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. (49) 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) 17:44 (50) 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. (51) 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 17:44 Yash Tyagi, Adv & Mr Subhrodeep, Adv. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (52) 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) (53) 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 17:44 (AIIMS). Advocates for R-4. (54) 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] (55) WITH + W.P.(C) 6089/2023 & CM APPL. 23902/2023 MASTER SAIANSH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

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. (56) 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) (57) WITH + W.P.(C) 7553/2023 and CM APPL. 29299/2023 MASTER HARSHIT PAWAR THROUGH HIS NEXT FRIEND 17:44 AND NATURAL FATHER SH.

PRAVEEN KUMAR..... Petitioner versus (58) 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. (59) 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 17:44 Mr. Rahul Malhotra, Advocate.

VERSUS

Mr. Ripudaman Bhardwaj, CGSC (60) 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. (61) WITH + W.P.(C) 10064/2023 and CM APPL. 38728/2023 ADITYA SONI THROUGH HIS NEXT FRIEND AND NATURAL 17:44 FATHER SH.

MUKESH KUMAR SONI..... Petitioner versus Mr. Ripudaman Bhardwaj, CGSC (62) 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 (63) WITH + W.P.(C) 10867/2023 & CM APPL. 42110/2023 PARTH KAMBOJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

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

WAZIR SINGH..... Petitioner versus (65) WITH + W.P.(C) 12222/2023 & CM APPL. 48011/2023 SAKSHAM JANGLA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus 17:44 (66) WITH + W.P.(C) 13172/2023 & CM APPL. 52098/2023 TANUJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER MR.

SUDHIR KUMAR & ANR...... Petitioners versus (67) 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. (68) WITH + W.P.(C) 13174/2023 & CM APPL. 52100/2023 HARSHIT RAJPUT THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

VERSUS

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

SURABHI BHARDWAJ..... Petitioner versus (70) WITH + W.P.(C) 13179/2023 & CM APPL. 52133/2023 MANVIK KHANGWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus (71) WITH + W.P.(C) 13180/2023 & CM APPL. 52134/2023 GAURAV KAPOOR..... Petitioner 17:44

VERSUS

(72) 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 (73) WITH + W.P.(C) 13187/2023 & CM APPL. 52142/2023 SUMIT VERMA THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

KRISHNA DEVI..... Petitioner versus (74) WITH + W.P.(C) 13188/2023 & CM APPL. 52145/2023 VIKASH MEENA..... Petitioner 17:44

VERSUS

(75) WITH + W.P.(C) 13190/2023 & CM APPL. 52148/2023 REHAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VINAY KAMAL..... Petitioner versus (76) WITH + W.P.(C) 13191/2023 & CM APPL. 52149/2023 YASH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. MONU..... Petitioner versus (77) WITH 17:44 + W.P.(C) 13192/2023 & CM APPL. 52152/2023 AARUSH PRITHWANI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

BHISHAM PRITHWANI..... Petitioner versus (78) 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 Mr. N. Ganpathy, Sr. Advocate & Mr. Manpreet Lamba, Adv. for D-2. (79) WITH + W.P.(C) 13196/2023 & CM APPL. 52158/2023 HIMANSHU SHARAMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

(80) WITH + W.P.(C) 13197/2023 & CM APPL. 52159/2023 MRADUL MISHRA..... Petitioner versus (81) WITH + W.P.(C) 13236/2023 & CM APPL. 52311/2023 YASH RAJ SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHARMENDER SINGH..... Petitioner versus (82) WITH + W.P.(C) 13237/2023 & CM APPL. 52314/2023 PARMEET SINGH THROUGH HIS NEXT FRIEND AND 17:44 NATURAL FATHER SH.

KULDEEP SINGH..... Petitioner versus (83) WITH + W.P.(C) 13239/2023 & CM APPL. 52319/2023 MOHIT THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SURENDER SINGH..... Petitioner versus (84) WITH + W.P.(C) 13240/2023 & CM APPL. 52321/2023 MOHAMMAD ARSHAD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MOHAMMAD HANIF..... Petitioner versus (85) WITH + W.P.(C) 13259/2023 & CM APPL. 52378/2023 17:44 SAHIL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MAHESH YADAV..... Petitioner versus (86) 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. (87) WITH + W.P.(C) 13304/2023 & CM APPL. 52496/2023 VIHAAN GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

GAURAV KUMAR..... Petitioner versus 17:44 (88) WITH + W.P.(C) 13379/2023 & CM APPL. 52805/2023 SAMEER LAMBA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. HANSRAJ..... Petitioner versus (89) 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) (90) WITH + W.P.(C) 13417/2023 & CM APPL. 53006/2023 HENIL PATEL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PANKAJ KUMAR PATEL..... Petitioner 17:44 Mr. Shubham Prasad, G.P. for UOI. (M: 9712533333) (91) 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) (92) 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 (93) WITH + W.P.(C) 13456/2023 & CM APPL. 53134/2023 RUDRA KIRTI KUMAR PATEL THROUGH HIS NEXT FRIEND AND NATURALFATHER SH.

VERSUS

(94) 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 (95) 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. 17:44 (96) 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. (97) 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) (98) WITH + W.P.(C) 15301/2023 & CM APPL. 61316/2023 SHRESHTH SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHEERAJ SHARMA..... Petitioner versus 17:44 (99) WITH + W.P.(C) 15302/2023 & CM APPL. 61317/2023 SHIVAM THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

SWATI LOHIA..... Petitioner versus (100) WITH + W.P.(C) 15315/2023 & CM APPL. 61386/2023 NIKUNJ GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

ASHWANI GUPTA..... Petitioner versus (101) WITH + W.P.(C) 15334/2023 & CM APPL. 61502/2023 DEVANSH AGARWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Through: Mr. Ripudaman Bhardwaj & Mr. Anurag Ahluwalia, CGSCs with Mr. Kushagra Kumar Adv. for UOI. (102) WITH + W.P.(C) 15336/2023 & CM APPL. 61505/2023 RAHUL..... Petitioner versus Ms. Purva Chugh & Ms. Pooja Arora, Advs. (103) 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) (104) WITH + W.P.(C) 15639/2023 & CM APPL. 62620/2023 KARAN SONI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Ms. Pratima N Lakra CGSC with Ms Kashish G Baweja, Advocate. (105) 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. (106) WITH + W.P.(C) 16267/2023 & CM APPL. 65509/2023 PRINCE PAREEK THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PANKAJ PAREEK..... Petitioners versus Through: Mr. Tanveer Oberoi(M:9958935556) 17:44 (107) AND + W.P.(C) 16361/2023 & CM APPL. 65805/2023 SARANSH KUMAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SATISH KUMAR MANDAL..... Petitioners versus Through: Mr. Tanveer Oberoi, Adv. (M:9958935556) (108) AND + W.P.(C) 55/2024 & CM APPL. 187/2024 BUSHRA KHAN THROUGH HER NEXT FRIEND AND NATURAL FATHER SH.

ASHRAT ALI KHAN..... Petitioner versus Through: Mr. Tanveer Oberoi, Adv. (M:9958935556) (109) AND + W.P.(C) 436/2024 & CM APPL. 2013/2024 VIKASH KUMAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. SANDEEP..... Petitioner (M: 6370344354)

VERSUS

17:44 (110) 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. 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. Directions in respect of the 14 Petitioners

3. At the outset, the ld. Counsel Mr. Oberoi on behalf AIIMS, states that there was a miscalculation in the number of vials ordered from M/s. Sarepta Therapeutics. The miscalculation occurred due to a discrepancy in the weight of the Petitioners.

4. With regard to the 14 Petitioners/children currently undergoing treatment, it appears there were discrepancies in the number of vials ordered. Let these discrepancies be resolved and any additional vials that need to be ordered should also be procured in a timely manner to ensure that the treatment is not interrupted in any way. Let a status report in this regard be filed by AIIMS by the next date of hearing. 17:44

5. In W.P.(C) 4539/2023, the Petitioner is stated to be suffering from DMD. Let the team, including Dr. Kabra from AIIMS, examine this child and file a report by the next date of hearing. CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024

6. Vide order dated 27th May, 2024, in respect of CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024, this Court directed as follows:

“2. CONT.CAS(C) 678/2024 and CONT.CAS(C)
687/2024 have been filed by a minor child - Master
Rakshan through his father-Mr. V. Manikandan. It is
stated that different authorities, including the Director,
Institute of Child Health, are in contempt of orders
passed by this Court dated 23rd March, 2021 and 15th
May, 2023.
3. In the contempt petitions, the father of the minor
child appeared virtually and made his submissions.
According to him, his son is suffering from seizures,
which is a form of a rare disease that none of the
doctors have been able to diagnose, even in Chennai at
the Institute of Child Health, which is stated to be a
Centre of Excellence. According to him, the child needs
immediate life-saving treatment for an ailment being
diagnosed differently by various medical professionals
as follows:
(a) Gliosis due to hypoglycaemia in 2015,
(b) Modified Hypsarrhythmia in 2017,
(c) Symptomatic West Syndrome in 2018,
(d) Evolving Lennox Gastaut syndrome in 2021.
(e) Global development delay, etc. 4. According to him, since diagnosis has not been made possible, he believes that the child is suffering from a rare disease and the child is entitled for diagnosis as also for treatment, in terms of various orders passed by this Court from time to time.

17:44

5. Heard. In the present case concerning Master Rakshan, admittedly even the diagnosis has also not yet taken place, as a first step before giving any further directions in the matter, it is deemed appropriate to direct the Petitioner to send all medical records to Mr. Oberoi, ld. Counsel for AIIMS on his email address toberoi.legal@gmail.com, with a copy to Dr. Madhulika Kabra at AIIMS, Delhi (madhulikakabra@hotmail.com).

6. Within one week after receipt of all documents and other records from the Petitioner, Dr. Kabra shall inform the Petitioner’s father- Mr. V. Manikandan, of the details of the Centre for Excellence in Chennai where the child can be examined to arrive at a comprehensive diagnosis of the Petitioner’s condition.

7. In the meantime, the Centre for Excellence in Delhi shall also coordinate with the Centre for Excellence situated in Chennai to firstly arrive at a diagnosis for the child. Upon diagnosis, if the child is found to be suffering from one of the rare diseases that is the subject matter of these petitions, recommendations shall be placed before this Court.

8. Additionally, both Centres for Excellence are directed to expedite the diagnosis process and ensure that all necessary tests and evaluations are conducted promptly. Regular updates on the progress of the Petitioner’s diagnosis and any preliminary findings shall be provided before the next date of hearing in the form of a status report.

9. In the meantime, the Centre of Excellence - Institute of Child Health is directed to place on record a complete status report regarding the Petitioner’s case. Let the same be placed on record before the next date 17:44 of hearing. The present order be communicated by the Registry to Respondent No. 1-Dr. Rema Chandramohan at the email addressdirectorich@tn.gov.in for necessary compliance.”

7. In CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024, following the order dated 27th May 2024, wherein the Court had directed the concerned child to be examined by the Centre of Excellence, Chennai, the said order was challenged by the Petitioners before the ld. Division Bench in LPA NO. 541/2024. The ld. Division Bench, vide order dated 4th July, 2024 appointed an Amicus Curiae, who has appeared before this Court today and submits that the said LPA was disposed of yesterday i.e., 11th July, 2024. The said order disposing of the appeal included permission for the Petitioners to approach this Court by way of an application. The sole submission on behalf of the Petitioners in these two contempt petitions is that the child should be examined at AIIMS, Delhi, instead of the Centre of Excellence, Chennai. They are willing to transfer all the records to AIIMS, Delhi. The relevant portion of the said orders read as follows: 4th

“1. During the course of hearing, we have repeatedly pointed out to the father of the minor appellant that by filing the present appeal, he would be causing more harm than good to the minor child, who is suffering from an undiagnosed disease. 2. After extensive arguments, the father of the minor appellant prays that an Amicus Curiae be appointed to assist this Court. 3. The appellant’s father assures this Court that he would abide by the advice given by learned Amicus Curiae and would not act contrary to what is suggested by the learned Amicus Curiae. The said undertaking is

17:44 accepted by this Court and the appellant as well as his father are held bound by the same.

4. Keeping in view the aforesaid, Mr. T. Singhdev, Advocate (Mobile No: 9999012345), who is personally present in Court, is appointed as the learned Amicus Curiae to assist this Court.

5. The Registry is directed to provide a soft copy of the paper book to the learned Amicus by tomorrow.” 11th

“1. Learned Amicus Curiae, after speaking to the father of the Appellant, wishes to withdraw the present appeal with liberty to file an application before the learned Single Judge for modification/variation of the impugned order in respect of change of Centre of Excellence to AIIMS, New Delhi along with certain other issues. 2. At the request of the father of the Appellant, learned Amicus Curiae is permitted to represent the appellant before the learned Single Judge. This Court places on record its appreciation for the services rendered by the learned Amicus Curiae. 3. With the aforesaid liberty, the present appeal stands disposed of.”

8. In view of the submissions made by the ld. Amicus Mr. T. Singh Dev, it is directed that all the medical records of Master Rakshan, through his father-Mr. V. Maniknandan be now transmitted to Mr. Oberoi, ld. Counsel for the AIIMS and Ms. Madhulika Kabra at the email addresses mentioned in paragraph 5 of the previous order dated 27th May, 2024 which are again set out below: toberoi.legal@gmail.com madhulikakabra@hotmail.com 17:44

9. Let the said medical records be transmitted within one week. Dr. Kabra shall then assemble a team to examine the medical records, and if the doctors believe that physical examination of the patient/child is necessary, upon being informed by Dr. Kabra, the child shall travel to AIIMS, Delhi with the father. By the next date of hearing, let a status report be placed on record by AIIMS, Delhi, detailing the manner in which the child’s medical conditions can be addressed.

10. Ld. Amicus submits that the child is suffering from epileptic attacks. It is directed that since the child is suffering from epilepsy, if the doctors from AIIMS, Delhi wish to meet the child virtually, the same may be organized through video conferencing. Other directions

11. Dr. Kabra at AIIMS is requested to compile and file a report on the following aspects by the next date of hearing:

(i) the number of children who have received treatment under the

(ii) The report should include a breakdown of the types of treatments provided for each of the rare diseases.

12. By the next date of hearing, let Mr. Tanveer Oberoi, ld. Counsel along with officials from AIIMS shall prepare a flow chart depicting the various steps taken from the initial contact of a child with a rare disease either at the Centre of Excellence in Delhi or other cities, up to the commencement of treatment. The said chart should detail the steps under the policies and include an illustrative example of at least one case to demonstrate the process or the steps followed. 17:44

13. Mr. Chawla, ld. Counsel appearing for the M/s. Sarepta Therapeutics shall file a note by the next date of hearing giving the following details:

(i) The new gene therapy ‘Elevidys’ developed by Sarepta for

(ii) the cost thereof, and if there are any clinic trial(s) planned in

(iii) The status of the FDA approval, etc.

14. Ms. Shyel Trehan, ld. Amicus Curiae has concluded her submissions.

15. By the next date of hearing, the Union of India shall place on record an affidavit detailing the amounts spent and the number of patients who received funding under the National Rare Diseases’ Policy 2021. The said affidavit shall also give details of the types of disorders treated under the said Policy. Mr. Singha shall also remain present on the next date.

16. List for submissions by Mr. Anand Grover, ld. Sr. counsel on 22nd July, 2024 at 3:30 p.m. PRATHIBA M. SINGH JUDGE JULY 12, 2024 rahul /dj/mr/dn (corrected & released on 16th July, 2024) 17:44