Master Arnesh Shaw v. Union of India & Anr.

Delhi High Court · 27 Sep 2024
Prathiba M. Singh
W.P.(C) 5315/2020
constitutional petition_allowed Significant

AI Summary

The Delhi High Court directed the Union of India to release funds for continuation of treatment of children with rare diseases and mandated streamlining of medicine procurement to uphold patients' right to health.

Full Text
Translation output
W.P.(C) 5315/2020 & connected matters
HIGH COURT OF DELHI
Date of Decision: 27th September, 2024 (3)
W.P.(C) 5315/2020 & CM APPL. 19189/2020, 4237/2023, 56264/2024
MASTER ARNESH SHAW ..... Petitioner
Through: Mr. Rahul Malhotra & Mr. Kaustubh Punj, Advocates.
Mr. Asif Ahmed, Adv. (M:
9560995495)
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs. (M:
JUDGMENT

6370344354) (IN ALL MATTERS)

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr Anish Chawla, Ms. Priyanka (appearing virtually), Mr. Dewan Aehasas Puri & Ms. Adya Luthra, Advs. for SAREPTA. (IN ALL MATTERS) Mr. Kirtiman Singh, CGSC, Mr. Waize Ali Noor & Ms. Vidhi Jain, Advs. Mr. Swarnendu Singha, (Under Secretary, MoHFW) (IN ALL MATTERS) Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar and Mr. Abhinav Bhardwaj, Advs. for UOI Mr. Sudarshan Rajan, Mr. Hitain Bajaj and Mr. Mahesh Kumar, Advs. for R-3. Mr. Neeraj, SPC along with Mr. Vedansh Anand (GP) and Mr. Soumyadip Chakraborty, Advs. UOI. Mr. Tanveer Oberoi & Mr. Jaswinder Singh, Advs. for (AIIMS). (M:9958935556) & (M:9811232066) (IN ALL MATTERS) Dr. Madhulika Kabra, AIIMS (appearing virtually) (IN ALL MATTERS) (2) WITH + CONT.CAS(C) 415/2022 & CM APPL. 18280/2022 MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS NATURAL GUARDIAN..... Petitioner versus RAJESH BHUSHAN & ORS...... Respondent Through: Mr. Kirtiman Singh, CGSC, Mr. Waize Mr. Divyam Nandrajog, Adv.

GNCTD with Mr. Mayank Kamra, Adv. for R-2. Bhardwaj, Advs. for UOI. (4) WITH + W.P.(C) 11610/2017 & CM APPL.27637/2018 FSMA INDIA CHARITABLE TRUST..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. (M: 9811101923)

VERSUS

UNION OF INDIA AND ANR...... Respondents Through: Mr. Sameer Vashisht, ASC, GNCTD and Mr. Vanshay Kaul, Adv. for R-2. Mr. Vijay Joshi, Sr. Panel Counsel. Mr. Anand Grover, Sr. Adv. with Mr. Saurabh Chauhan, Mr. Varun Jain, Mr. Rohin Bhatt, Ms. Reny Chauhan, Mr. Sadeeq Ur Rahman, Advs. (M:9971540730) (5) 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 with Mr. Siddhant Dutt, Adv. (M:9891363718). (6) WITH + W.P.(C) 7756/2023 & CM APPL.29934/2023 MASTER PUSPENDER THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PAWAN KUMAR..... Petitioner versus UNION OF INDIA & ANR...... Respondent (7) 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 (8) 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 (9) WITH + W.P.(C) 8948/2023 & CM APPL. 33931/2023 ARJUN SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SANJEEV SHARMA..... Petitioner versus (10) WITH + W.P.(C) 8973/2023 & CM APPL. 34025/2023 ADVIK RAYAKAWAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PIYUSH RAYAKAWAR..... Petitioner versus Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI (11) WITH + W.P.(C) 8986/2023 & CM APPL. 34083/2023 LAKSHAY AGARWAL..... Petitioner versus Through: Mr Anurag Ahluwalia, CGSC with Mr Tarveen Singh Nanda & Ms. Hridyanshi Sharma, Adv. for R-1 (12) 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 Mr Abhishek Sharma, Miss Kritya Sinha, Mr. Pranshul Kulshreshtha, Advs. for R-5. (M: 8294621791) (13) 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: Ms. Amrita Prakash, CGSC & Mr. Siddharth Khatana, Adv. (M:

9811132326) (14) WITH + W.P.(C) 322/2021 & CM APPL. 812/2021 KESHAV SHARMA AGE 12 YEARS THROUGH HIS NEXT FRIEND & NATURAL FATHER SANJEEV KUMAR..... Petitioner versus Through: Mr. Ajay Digpaul and Ms. Ishita Pathak, Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI. Ms. Arti Bansal & Ms. Akansha Kumari, Advs. for UOI. (15) WITH + W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022 MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner versus (16) WITH + W.P.(C) 1511/2021 & CM APPLs. 4331/2021, 8616/2022 MASTER KENIT JHAWAR @ KESHAV..... Petitioner versus Through: Mr. Rishabh Sahu, CGSC with Mr Sameer Sharma, Adv. for UOI. Mr. Ghanshyam Mishra, Adv. for R-1. (17) WITH + W.P.(C) 1611/2021 & CM APPL. 4600/2021 LAKSHYA KUMAR GOYAL, 8 YRS OLD, THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

VIPIN KUMAR.... Petitioner Mr. Rahul Malhotra & Mr. Kaustubh Punj, Advocates versus Through: Ms. Bharathi Raju, Sr. Panel Counsel, for UOI. (M:9868895906) (18) 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.

33,851 characters total

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Anuj Aggarwal, ASC, GNCTD, with Mr. Siddhant Dutt Advs for R-2. (19) 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). (20) WITH + W.P.(C) 3689/2021 & CM APPL.11179/2021 DHANANJAY BHARDWAJ, 11 YEARS OLD, THROUGH HIS NEXT FRIEND & NATURAL FATHER SH. AMIT KR...... Petitioner versus Through: Mr. Sanjeev Uniyal, Mr. Dhawal Uniyal & Mr. Rahul Kumar, Advs for R-1. (M:9560806614) (21) 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, Advs. for R-1. (22) 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, Adv. for UOI. (M:9811132326) (23) 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 Through: Mr. Ashok Agarwal Mr. Kumar versus Mr. Rajkumar Yadav, Adv. for UOI. (24) WITH + W.P.(C) 3737/2021 & CM APPL. 11277/2021 SHOURYA MARU, 7 YEARS OLD, THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

KAMAL KUMAR MARU..... Petitioner versus Through: Mr. Ranvir Singh (CGSC) for R-1. (M:9818071061) (25) WITH + W.P.(C) 3859/2021 & CM APPL.11647/2021 SIDDHARTH SWARNKAR, 9 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DINESH KUMAR SWARNKAR..... Petitioner versus Through: Mr. Anuj Aggarwal, ASC with Mr. Yash Upadhyay, Mr. Siddhant Dutt, Advs. for GNCTD. (M:9891363718). (26) 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, Adv. Mr. Harish Kumar Garg and Ms. Palak Gupta, Ms. Khushboo Sharma, Advocates for UOI (M:9810150029). (27) 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 (28) 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 Through: Mr. Ripudam Bhardwaj, CGSC with Mr. Vinod Tiwari, Adv. for R-1 & 3. (29) 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. (30) WITH + W.P.(C) 4551/2021 & CM APPL. 13949/2021 SHAURYA DAHIYA, 7 YEARS OLD, THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

SATBIR DAHIYA..... Petitioner versus Through: Mr. Avnish Singh, SPC with Mr. Mahendra Vikram Singh & Ms. Kanchan Kumari, Advs (M:8826437138) Mr. Anurag Ahluwalia, CGSC. (31) 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. (32) 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 (33) WITH + W.P.(C) 5395/2021 & CM APPL. 16686/2021, 63399/2023 MASTER AYUSHMAN CHATURVEDI..... Petitioner Through: Mr. Anurag Ojha & Mr. Deepak Somani, Advs.

VERSUS

Through: Mr. Niraj Kumar, Sr. CGSC with Mr. Chaityana Kumar, Adv. for UOI. Mr. Parth Goyal, Adv. for Mr. Jawahar Raja, ASC(C) GNCTD. (34) 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. (35) 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 Mr. Rajkumar Yadav, Adv. for UOI. (36) 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 & Mr. Rahul Kumar, Advs for R-1. (M:9560806614) Mr. Rishikesh Kumar ASC with Mr Aditya Raj, Mr. Muhammad Zaid, Mr. Sheenu Priya, Mr. Sudhir Kumar Shukla & Mr Sumit Choudhary, Advs. (37) 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 Mr. Ripudaman Bhardwaj CGSC and Mr. Hardik Bedi, GP for UOI. (38) 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 Mr. Ripudaman Bhardwaj CGSC and Mr. Kushagra Kumar, Adv. (39) 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. (40) 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. (41) 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, Adv. for UOI. (M:9818836222) (42) 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 Adv.s for UOI. Ms. Shubhra Parashar, Mr. Yash Hari Dixit, Mr. Akshay Kumar, Mr. Pushpender Singh Charak, Ms. Pinky Yadav, Advs. (M: 9958458448) (43) 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. (44) 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. (45) WITH + W.P.(C) 4538/2023 & CM APPL.17337/2023 SANDEEP KALIA..... Petitioner versus Mr. Mukul Singh CGSC with Ms. Ira Singh, Adv. for R-1. (M: 9971359513) (46) 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 Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (47) 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 & Mr Subhrodeep, Adv. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (48) 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) (49) 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. and Mr. Mahesh Kumar, Advs. for R-4. (50) 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 Sr. Panel Counsel, Mr Hardik Bedi GP. (M: 8010414123) and Mr. Mahesh Kumar, Advs. for R-2. Mr Atul Krishna, SPC with Mr Hardik Bedi, GP for R[1] (51) 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 Mr Atul Sai Krishna Senior Panel Counsel, Mr Hardik Bedi GP. (52) 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. Kushagra Kumar, Mr. Gokul Sharma (GP), Adv. (M- 9045885304) (53) 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 Mr. Kushagra Kumar Adv. for UOI. (54) WITH + W.P.(C) 7644/2023 and CM APPLS. 29628-29/2023 MASTER SATYAKI ADAK THROUGH HIS NATURAL GUARDIAN..... Petitioner Punj, Advocate.

VERSUS

Through: Mr. Ripudaman Bhardwaj, CGSC with Mr. Kushagra Kumar & Mr. Abhinav Bhardwaj, Advs. for UOI. Mr. Ankit Verma, Advocate. (55) 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

Through: Mr. Ripudaman Bhardwaj, CGSC with Mr. Kushagra Kumar, and Mr. Abhinav (56) WITH + W.P.(C) 10063/2023 and CM APPL. 38727/2023 SUMIT KUMAR SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

Mr. Kushagra Kumar, Mr Vedansh Anand, Advs. for UOI. (57) 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 with Mr. Kushagra Kumar, and Mr. Abhinav (58) 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 (59) WITH + W.P.(C) 10867/2023 & CM APPL. 42110/2023 PARTH KAMBOJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARDEEP KUMAR..... Petitioner versus (60) WITH + W.P.(C) 10870/2023 & CM APPL. 42114/2023 PARV INSAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

WAZIR SINGH..... Petitioner versus (61) WITH + W.P.(C) 12222/2023 & CM APPL. 48011/2023 SAKSHAM JANGLA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus (62) WITH + W.P.(C) 13172/2023 & CM APPL. 52098/2023 TANUJ THROUGH HIS NEXT FRIEND AND NATURAL FATHER MR.

SUDHIR KUMAR & ANR...... Petitioners versus (63) 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. (64) WITH + W.P.(C) 13174/2023 & CM APPL. 52100/2023 HARSHIT RAJPUT THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

MEENA RAJPUT..... Petitioner versus (65) WITH + W.P.(C) 13175/2023 & CM APPL. 52102/2023 PARMARTH KAPOOR THROUGH HIS NEXT FRIEND AND NATURAL MOTHER MS.

SURABHI BHARDWAJ..... Petitioner versus (66) WITH + W.P.(C) 13179/2023 & CM APPL. 52133/2023 MANVIK KHANGWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARVEEN KUMAR..... Petitioner versus (67) WITH + W.P.(C) 13180/2023 & CM APPL. 52134/2023 GAURAV KAPOOR..... Petitioner versus (68) WITH + W.P.(C) 13186/2023 & CM APPL. 52141/2023 SOUMYA MISHRA THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

VINOD KUMAR MISHRA..... Petitioner versus (69) WITH + W.P.(C) 13187/2023 & CM APPL. 52142/2023 SUMIT VERMA THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

KRISHNA DEVI..... Petitioner (70) WITH + W.P.(C) 13188/2023 & CM APPL. 52145/2023 VIKASH MEENA..... Petitioner versus (71) WITH + W.P.(C) 13190/2023 & CM APPL. 52148/2023 REHAN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VINAY KAMAL..... Petitioner versus (72) WITH + W.P.(C) 13191/2023 & CM APPL. 52149/2023 YASH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. MONU..... Petitioner versus (73) WITH + W.P.(C) 13192/2023 & CM APPL. 52152/2023 AARUSH PRITHWANI THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

BHISHAM PRITHWANI..... Petitioner versus (74) 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 R-2. (75) WITH + W.P.(C) 13196/2023 & CM APPL. 52158/2023 HIMANSHU SHARAMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VISHAL SHARAMA..... Petitioner versus (76) WITH + W.P.(C) 13197/2023 & CM APPL. 52159/2023 MRADUL MISHRA..... Petitioner (77) 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 (78) WITH + W.P.(C) 13237/2023 & CM APPL. 52314/2023 PARMEET SINGH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

KULDEEP SINGH..... Petitioner versus (79) WITH + W.P.(C) 13239/2023 & CM APPL. 52319/2023 MOHIT THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SURENDER SINGH..... Petitioner versus (80) WITH + W.P.(C) 13240/2023 & CM APPL. 52321/2023 MOHAMMAD ARSHAD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MOHAMMAD HANIF..... Petitioner versus (81) WITH + W.P.(C) 13259/2023 & CM APPL. 52378/2023 SAHIL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MAHESH YADAV..... Petitioner versus (82) WITH + W.P.(C) 13260/2023 & CM APPL. 52379/2023 VISHWAS GOYAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

MANGLESH GOYAL..... Petitioner versus (83) WITH + W.P.(C) 13304/2023 & CM APPL. 52496/2023 VIHAAN GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

GAURAV KUMAR..... Petitioner versus (84) WITH + W.P.(C) 13379/2023 & CM APPL. 52805/2023 SAMEER LAMBA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. HANSRAJ..... Petitioner versus (85) 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. (86) 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. Kushagra Kumar, Adv. & Mr. Shubham Prasad, G.P. for UOI. (87) WITH + W.P.(C) 13449/2023 & CM APPL. 53114/2023 HENILKUMAR PRAJAPATI THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

KANAIYALAL PRAJAPATI... Petitioner versus Through: Mr. Shashank Garg, CGSC with Mr. Vanshul Pali, Adv. (M: 9711552649) (88) 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 (89) 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 (90) 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 (91) WITH + W.P.(C) 13475/2023 ANUJ KUMAR..... Petitioners versus Mr. Shashank Garg, CGSC with Mr. Vanshul Pali & Ms Seema Singh, Advs. for UOI. (M: 8588871365) (92) 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. Vedansh Anand and Mr. Mahesh Kumar Rathore, Advs. UOI. (93) 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 (94) WITH + W.P.(C) 15301/2023 & CM APPL. 61316/2023 SHRESHTH SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHEERAJ SHARMA..... Petitioner versus (95) WITH + W.P.(C) 15302/2023 & CM APPL. 61317/2023 SHIVAM THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

SWATI LOHIA..... Petitioner versus (96) WITH + W.P.(C) 15315/2023 & CM APPL. 61386/2023 NIKUNJ GUPTA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

ASHWANI GUPTA..... Petitioner versus (97) WITH + W.P.(C) 15334/2023 & CM APPL. 61502/2023 DEVANSH AGARWAL THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

CHANDRAPRAKASH AGARWAL..... Petitioner versus Through: Mr. Ripudaman Bhardwaj & Mr. Anurag Ahluwalia, CGSCs with Mr. Kushagra Kumar Adv. for UOI. (98) WITH + W.P.(C) 15336/2023 & CM APPL. 61505/2023 RAHUL..... Petitioner versus Through: Mr Anurag Ahluwalia, CGSC with Mr Tarveen Singh Nanda & Ms. Hridyanshi Sharma, Adv. for R-1 Mr. Ripudaman Bhardwaj CGSC, Mr. Kushagra Kumar, Adv. Ms. Purva Chugh & Ms. Pooja Arora, Advs. (99) 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) (100) 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. (101) 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, Adv. for UOI. (102) WITH + W.P.(C) 16267/2023 & CM APPL. 65509/2023 PRINCE PAREEK THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PANKAJ PAREEK..... Petitioners versus (103) WITH + W.P.(C) 16361/2023 & CM APPL. 65805/2023 SARANSH KUMAR THROUGH HIS NEXT FRIEND & NATURAL FATHER SH.

SATISH KUMAR MANDAL..... Petitioners versus (104) WITH + W.P.(C) 55/2024 & CM APPL. 187/2024 BUSHRA KHAN THROUGH HER NEXT FRIEND AND NATURAL FATHER SH.

ASHRAT ALI KHAN..... Petitioner versus (105) WITH + W.P.(C) 436/2024 & CM APPL. 2013/2024 VIKASH KUMAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. SANDEEP..... Petitioner versus (106) AND + W.P.(C) 479/2024 & CM APPL. 2128/2024 PARTH SAH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. RAMANAND..... Petitioner versus 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. Oral submissions in these matters concluded on 31st August, 2024. CM APPL.56264/2024 (for recall of order dated 13th September, 2024)

3. This is an application seeking recall of the impugned order dated 13th September, 2024, by which the Union of India was directed to release a sum of Rs.10 crores to AIIMS, Delhi to continue the treatment of 18 patients suffering from DMD, Gaucher’s disease and MPS. These children have already been administered medicines under the National Policy for Rare Diseases (hereinafter, ‘NPRD, 2021’). The relevant portion of the said order dated 13th September, 2024, reads as follows: “Directions qua doses for the 14 patients.

13. On 9th September, 2024, the ld. Amicus apprised the Court that the doses for 14 patients had not been procured, though AIIMS had communicated regarding the release of funds for the said purpose to the Ministry of Health and Family Welfare (‘MoHFW’). In respect of the same, this Court directed as follows on 9th September, 2024: “6. Ld. Amicus has pointed out that the next doses for the 14 patients have not been procured, though, AIIMS, has written to the Ministry of Health and Family Welfare (‘MoHFW’).

7. On behalf of AIIMS, ld. Counsel Mr. Tanveer Oberoi submitted that a letter dated 28th August, 2024 was received from MoHFW, stating that the funding would only be provided in terms of the National Rare Diseases’ Policy, and the amount required for an additional three months of treatment is substantial. Regarding four other patients, it is the stand of AIIMS that the MoHFW has not released further funds.

8. Let Mr. Swarnendu Singha (Under Secretary, MoHFW) explain this to the Court by way of an affidavit, and he shall remain present in Court on the next date of hearing.”

14. Today, Mr. Swarnendu Singha, Under Secretary, Ministry of Health and Family Welfare (hereinafter ‘MoHFW’), is present in Court. According to Mr. Singha, the budget allocated for payments in terms of the National Rare Diseases’ Policy has been exhausted.

15. In the opinion of this Court, since treatment of the 14 patients has already commenced, it is directed that the MoHFW shall grant approval to AIIMS to place orders on M/s. Sarepta for the supply of the necessary medicines and release the corresponding funds, based on the price last quoted by M/s. Sarepta to the National Rare Diseases’ Committee (‘NRDC’). The said approval shall be granted by 19th September, 2024, failing which action for contempt would be liable to be taken.

16. Upon receiving the approval, AIIMS shall place the order on the designated distributor, whose details shall be communicated by Mr. Anish Chawla, ld. Counsel appearing for M/s. Sarepta to Mr. Tanveer Oberoi, ld. Counsel appearing for AIIMS.

17. The concerned distributor of M/s. Sarepta, who would be taking responsibility for supplying the medicines, shall remain present in Court on the next date of hearing. Directions qua doses patients suffering from Gaucher’s and MPS.

18. It is submitted that further doses for four patients i.e., two patients suffering from Gaucher’s disease and two patients suffering from MPS have not been provided.

19. This Court is of the opinion that the medicines for these four patients ought not to be discontinued. The same is being directed after considering the following facts: • that, as per affidavit dated 19th July, 2024, filed by the Union of India, the budget for expenditure under the National Rare Diseases’ Policy, 2021 since FY 2022- 2023, has, in fact, been reduced from previous years, and, • that these four patients have already been administered the medicines.

20. Let the MoHFW release a sum of Rs.10 crores to AIIMS by the next date of hearing, so that even the non-DMD patients may be provided the requisite treatment(s) till the final judgment of this Court in these batch matters. It is made clear that the said approval/release of funds shall be subject to the final outcome in these batch matters.

21. Let a comprehensive status report in respect of all the directions contained in the present order be filed by the next date of hearing, by the respective parties, in respect of whom the directions have been issued.”

4. In this application, the stand of the Union of India is that the budgeted amount for AIIMS has already been exhausted, and there are other Centres of Excellence (hereinafter, ‘CoEs’), who have requested for release of funds.

5. In the context of rare diseases, this Court has recognised, from time to time, that AIIMS, Delhi is one of the nodal Centres of Excellence, actively administering treatment for patients suffering from rare diseases. Eighteen patients have already commenced treatment, and discontinuation of treatment would have a negative repercussion on their health. Moreover, the negotiated price with M/s. Sarepta, has been significantly reduced, as per the last quotation given to the National Rare Diseases’ Committee (hereinafter, ‘NRDC’).

6. Under such circumstances, withholding the treatment of these 18 patients would be completely unjust and contrary to law, as the same would have a debilitating effect on their general living condition and health. Since the treatment of these children has already begun, the amount as directed shall be released within next three working days, failing which Ms. Latha Ganapathy, Joint Secretary, Ministry of Health and Family Welfare, shall remain present in Court on the next date of hearing.

7. It is alleged by Mr. Kirtiman Singh, ld. CGSC that out of the allocated amount of Rs.34 crores, AIIMS has spent only Rs.[9] crores as yet. Dr. Madhulika Kabra, appearing virtually, has clarified that the total spent amount on the procurement of medicines for patients suffering from rare diseases would be reflected only after the medicines have been procured. There are a number of patients for whom orders have already been placed and the amount has to be utilized for the said patients. Accordingly, she submits that the continuation of the treatment would not be possible without further allocation of money. In support of this submission, the affidavit dated 21st July, 2024 is referred to and relied upon. In the said affidavit, AIIMS stated that approximately 227 children were allocated funds NPRD, 2021, and it further provided a detailed chart indicating the type of disorder, nature of treatment, funds allocated, expenditure incurred, and other relevant/important information pertaining to such cases.

8. Be that as it may, considering that the amount is being directed to be paid to AIIMS, Delhi, which is fully accountable for all the money spent, let the amounts in terms of order dated 13th September, 2024 be released by the UOI.

9. CM APPL.56264/2024 is dismissed in the above terms. Directions qua Sarepta

10. In terms of the order dated 13th September, 2024, Mr. Anish Chawla, ld. Counsel appearing for M/s. Sarepta Therapeutics handed over to the Court an affidavit dated 19th September, 2024, and the same has been placed on record. Ms. Priyanka has appeared virtually today.

11. It is seen from the affidavit filed by M/s. Sarepta that the process for procurement currently proposed is as under:

“4. It is humbly submitted that currently the
medicines are not being produced in India by Sarepta.
Sarepta has appointed a global distributor, Impatients
(“myTomorrows”), to supply drugs on a named
patient/early access basis, and myTomorrows has
engaged a service provider in India to assist with the
supply of Sarepta’s products to named patients.
5. It is humbly submitted that, as of the date of this
document, the prices offered in India for the medicinal
products eteplirsen, golodirsen, and casimersen are the
lowest globally provided to any national healthcare
system.
6. It is humbly submitted that for the purchase and
supply process to be smooth, the following particulars of
the patient should be provided at the time of placing the
purchase order by the concerned Ordering Health
Institute / Centre for Excellence and/or Rare Disease
Committee:
a. Name of patient

b. Name of the medicinal product c. Weight d. Height e. Quantity / vials f. Gender g. Year of birth h. Relevant medical information and condition A Confidential Disclosure Agreement (CDA) will be executed by myTomorrows and the Ordering Health Institute / Centre for Excellence and/or Rare Disease Committee before sharing the aforementioned patient details.

7. The concerned Ordering Health Institute / Centre for Excellence and/or Rare Disease Committee shall also provide the following documents along with the email for purchase of the medicines: a) Signed Confidential Disclosure Agreement (CDA) b) Custom duty and IGST exemption certificate, preferably simultaneously, in order to expedite the supply c) Application Form 12A and the corresponding Permit Form 12B d) Institute/hospital name, address, and contact details e) Treating physician name f) Pharmacist name g) Signed and/or stamped Physician statement/Doctor’s declaration on unmet medical need h) Physician license i) Pharmacy license

8. Upon receipt of the purchase order and the patient particulars with the above information (mentioned in Points 6 and 7), the patient will be enrolled within 48 hours, and the order will be forwarded to myTomorrows for processing.

9. Within 24 hours of receipt of the purchase order and the above-mentioned documents, the Finance Team of myTomorrows will share the Invoice containing the instructions for Pre-Payment with the Ordering Health Institute. Once the pre-payment is received by myTomorrows, the order will be processed within 24 hours.

10. Once customs clearance is obtained, shipping to the Ordering Institute will take approximately 5 business days.

11. The tentative overall timeline for the delivery of the medicinal products will be about 11 days from the date of receipt of the purchase order and documents via the designated email.”

12. The above process is extremely cumbersome and long-drawn as an agreement is contemplated for each patient. Customs waivers have to be obtained for each patient. The proposed process is completely unrealistic in terms of efficiency of procurement and administration.

13. Thus, M/s. Sarepta shall place on record the general process for procurement of medicines on a bulk basis and not on a patient-to-patient basis so that upon orders being placed the same can be supplied without delay, in India itself. Let the same be done by the next date of hearing.

14. In addition, M/s. Sarepta Therapeutics is also directed to place on record a chart containing the details of all its granted patents and patent applications filed in India, along with the updated Form 3 as required by Section 8 of the Patents Act, 1970, in respect of the medicines currently being used for DMD patients, by the next date of hearing.

15. Let Ms. Priyanka be present in Court on the next date of hearing as well.

16. List on 3rd October, 2024.

17. These are part-heard matters.

PRATHIBA M. SINGH JUDGE SEPTEMBER 27, 2024/dk/dn