Master Medhansh Jhawar @ Madhav v. Rajesh Bhushan & Ors.

Delhi High Court · 10 May 2023 · 2023:DHC:3274
Prathiba M. Singh
W.P.(C) 5315/2020 & connected matters
2023:DHC:3274
constitutional other Significant

AI Summary

The Delhi High Court recognized the State's obligation to provide adequate treatment for rare disease patients, directed detailed data submission, and underscored the need for enhanced government action and innovative solutions.

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2023:DHC:3274
W.P.(C) 5315/2020 & connected matters
HIGH COURT OF DELHI
Date of Decision: 10th May, 2023
CONT.CAS(C) 415/2022 & CM APPL. 18280/2022
MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS NATURAL GUARDIAN ..... Petitioner
Through: Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
(M: 6370344354)
VERSUS
RAJESH BHUSHAN & ORS. ..... Respondent
Through: Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI.
Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Adv. for R-2.
Mr. Tanveer Oberoi for AIIMS (M:9958935556) and Mr. Jaswinder Singh, Advocate (M:9811232066)
Dr. Shefali Gulati in person.
JUDGMENT

(48) WITH + 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.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI. Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). Mr. Dharmender Verma and Mr. Vishal Singh, Advs. for BIRAC. Dr. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Sheffali Gulati, (AIIMS). Mr Dharmender Verma Adv., Mr. Vishal Singh Adv., Mr. Shantanu Garg Advocate for BIRAC (49) WITH + W.P.(C) 11610/2017 & CM APPL. 27637/2018, 44016/2022 FSMA INDIA CHARITABLE TRUST..... Petitioner Through: Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

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. Tanveer Oberoi, Adv. for (AIIMS). Mr. Saurabh Chauhan & Mr. Varun Jain, Advocates for intervenors. (50) WITH + W.P.(C) 2943/2020 & CM APPLs. 10227/2020, 6633/2022, 7534/2023 ALISHBA KHAN..... Petitioner Through: Mr. Rahul Malhotra, Advocate. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA AND ORS...... Respondents Through: Mr. Anuj Aggarwal, ASC, GNCTD, Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh, Advocates for R-2 and 4 (M:9891363718). Mr. Tanveer Oberoi, Adv. for (AIIMS). (51) WITH 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters + 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Ms. Amrita Prakash, CGSC and Mr. Vishal Ashwani Mehta, Advocates (M:9818667963). Mr. Tanveer Oberoi, Adv. (52) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Ajay Digpaul and Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (53) WITH + W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022 MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner Through: Mr. Rahul Malhotra, Advocate. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh & Ms. Vidhi Jain, 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Advocates (M: 9999359235) Mr. Tanveer Oberoi, Adv. for (AIIMS). (54) WITH + W.P.(C) 1511/2021 & CM APPL. 4331/2021, 8616/2022 MASTER KENIT JHAWAR @ KESHAV..... Petitioner Through: Mr. Rahul Malhotra, Advocate. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

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UNION OF INDIA & ANR...... Respondents Through: Mr. Rishabh Sahu, Central Govt Sr. Counsel with Mr Sameer Sharma, Adv. for UOI. Mr. Ghanshyam Mishra, Advocate with Mr. Babli Chauhan, Adv. for R-1. (M: 9899794006) Mr. Tanveer Oberoi, Adv. for (AIIMS). (55) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Bharathi Raju, Sr. Panel Counsel for UOI. (M:9868895906) Mr. Tanveer Oberoi, Adv. for (AIIMS). (56) WITH + W.P.(C) 3662/2021 & CM APPLs. 11103/2021, 25590/2021, 32504/2021 PAYEL BHATTACHARYA..... Petitioner 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Through: Mr. Aditya Chatterjee and Mr. Ishaan Karki, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Anuj Aggarwal, ASC, GNCTD, Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh, Advocates for R-2 (M:9891363718). Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (57) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. T.P. Singh, Sr. Central Govt. Counsel for R-1 (M:9971579687). Mr. Tanveer Oberoi, Adv. for (AIIMS). (58) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters versus UNION OF INDIA & ANR...... Respondents Through: Mr. Sanjeev Uniyal and Mr. Dhawal Uniyal, Advs for R-1 (M:9560806614). Mr. Tanveer Oberoi, Adv. for (AIIMS). (59) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Sanjib Kumar Mohanty, Sr. Panel Counsel with Mr. Subesh K. Sahood, Adv. for R-1. Mr. Tanveer Oberoi, Adv. for (AIIMS). (60) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Siddharth Khatana, Advocate for UOI. (M:9811132326) Mr. Tanveer Oberoi, Adv. for (AIIMS). 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters (61) 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 Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (62) WITH + W.P.(C) 3737/2021 & CM APPL. 11277/2021 SHOURYA MARU, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

KAMAL KUMAR MARU..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Ranvir Singh (CGSC) for R-1. (M:9818071061) Mr. Tanveer Oberoi, Adv. for (AIIMS). (63) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters UNION OF INDIA & ANR...... Respondents 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). Mr. Tanveer Oberoi, Adv. for (AIIMS). (64) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Sanjeev Sabharwal, Sr. Panel Counsel with Ms. Shweta, Advocate for UOI. Mr. Harish Kumar Garg and Ms. Khushboo Sharma, Advocates for UOI (M:9810150029). Mr. Tanveer Oberoi, Adv. for (AIIMS). (65) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters (AIIMS). (66) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondent Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). Mr. Ripudam Bhardwaj, CGSC with Mr. Vinod Tiwari, Adv. for R-1 & 3. (67) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Satya Ranjan, (Sr. Panal Counsel) with Mr. Kautilya Birat, Advs for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (68) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Avnish Singh, (SCGC) and Ms. Pushpalata Singh, Advocate. (M:8826437138) Mr. Tanveer Oberoi, Adv. for (AIIMS). (69) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Ranvir Singh (CGSC) for R-1. Mr. Tanveer Oberoi, Adv. for (AIIMS). (70) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (71) WITH + W.P.(C) 5395/2021 & CM APPL. 16686/2021 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters MASTER AYUSHMAN CHATURVEDI..... Petitioner Through: Mr. Deepak Somani, Advocate. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Niraj Kumar, Sr. Central Govt. Counsel for UOI. Ms. Arushi Gupta on behalf of Mr. Jawahar Raja, ASC, GNCTD Mr. Tanveer Oberoi, Adv. for (AIIMS). (72) WITH + W.P.(C) 9684/2021 AADHYAN JAISWAL 11 YEARS OLD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH ANIL KUMAR JAISWAL..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Adv. Mr. Tanveer Oberoi, Adv. for (AIIMS). (73) WITH + W.P.(C) 14317/2021 & CM APPL. 45148/2021, 14521/2023 SHREYANSH AARAV, 11 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.

KANCHAN KAMINI..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters UNION OF INDIA & ANR...... Respondents Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (74) WITH + W.P.(C) 1182/2022 & CM APPL. 3442/2022 INSHA MINOR THROUGH HER NEXT FRIEND AND NATURAL FATHER SH IRSHAD AHMAD SOFI..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Sanjeev Uniyal & Mr. Dhawal Uniyal, 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) Mr. Tanveer Oberoi, Adv. for (AIIMS). (75) WITH + W.P.(C) 1054/2023 and CM APPL. 4164/2023 MASTER TUSHAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH. JAI PRAKASH..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI. Mr. Ripudaman Bhardwaj CGSC with 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Mr Hardik Bedi GP for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS) (76) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI. Dr. Nabendu Sekhar Chatterjee, from ICMR. Mr. Ripudaman Bhardwaj CGSC with Mr Hardik Bedi GP for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS) (77) AND + W.P.(C) 2614/2023 KARAN, 14 YEARS OLD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VIJAY KUMAR..... Petitioner Through: Ms. Sonia Sharma, Ms. Neha Chugh, Mr. Vijay Chandra jha & Mr. Tushant, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Nitinjya Chaudhry, Sr Panel Counsel with Mr. Abhishek, GP (M- 9810103680). Mr. Abhishek Khanna, Adv. for R-1. Mr. Tanveer Oberoi, Adv. for (AIIMS) 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters (78) WITH + W.P.(C) 4495/2023 & CM APPL.17190/2023 PARAS JAIN THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SANDEEP JAIN..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. (M: 9811101923) Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Raj Kumar, Advocate, SPC, UOI. Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. (79) WITH + W.P.(C) 4502/2023 & CM APPL.17238/2023 SHREYANSH VERMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

DHEERAJ KANT VERMA..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Raj Kumar Yadav, Advocate for UOI. (M:9818836222) Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. (80) WITH + W.P.(C) 4526/2023 & CM APPL.17321/2023 MASTER LAKSHYAVED KALISHARAN THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SHILPA RAMESH …. Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Mr. Virender Pratap Singh Charak and Ms.Shubhra Parashar Advocates for UOI. (81) 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 Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Ms Monika Arora ( CGSC), Mr Yash Tyagi, Adv & Mr Subhrodeep, Adv. (82) WITH + W.P.(C) 4536/2023 & CM APPL.17333/2023 MADHAV SHARMA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

NEERAJ SHARMA..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Sushil Raaja, SPC, UOI. Mr. Kirtiman Singh, CGSC with Ms. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Vidhi Jain, Adv. for UOI. (83) WITH + W.P.(C) 4538/2023 & CM APPL.17337/2023 SANDEEP KALIA..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Mr. Mukul Singh CGSC, Ms. Ira Singh, Adv. for R-1. (M:

9971359513) (84) WITH + W.P.(C) 4539/2023 & CM APPL.17340/2023 RAJVEER SRIVASTAVA THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

RAJESH KUMAR RIVASTAVA..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (85) WITH + W.P.(C) 4591/2023 & CM APPL. 17548/2023 VANSH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VIPIN KUMAR..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Ms Monika Arora ( CGSC), Mr Yash Tyagi, Adv & Mr Subhrodeep, Adv. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (86) AND + W.P.(C) 5102/2023 & CM APPL.19968/2023 PRANSHU NAMDAR THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

PARIXIT NAMDHAR..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Ms. Ritu Reniwal (SPC UOI). Ms. Prerna Dhall, Advocate of UOI. (M: (8920466128) (39) WITH + W.P.(C) 5726/2023 & CM APPL. 22436/2023 MASTER HARENDER THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

SUNDER SINGH & ANR...... Petitioners Through: Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advs. (M: 9811101923)

VERSUS

UNION OF INDIA & ORS...... Respondents Through: Mr Neeraj, SPC with Mr. Sahaj Garg & Mr Vedansh Anand, Advocates for UOI (M: 8076802450). 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters Mr. Tanveer Oberoi, Advocate for (AIIMS). (40) WITH + W.P.(C) 5753/2023 & CM APPL. 22528/2023 VINAY THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

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8010414123) (117) AND + W.P.(C) 6089/2023 and CM APPL. 23902/2023 MASTER SAIANSH THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

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UNION OF INDIA & ANR...... Respondents Through: Mr Atul Krishna Senior Panel Counsel, Mr Hardik Bedi GP. CORAM: JUSTICE PRATHIBA M. SINGH Prathiba M. Singh J. (Oral)

1. This hearing has been done through hybrid mode.

2. Today, a supplementary affidavit has been handed over to the Court on behalf of the Ministry of Health & Family Welfare. The said affidavit shows that as per the Ministry, Rs.40 crores have been released to the eleven Centers of Excellence which are dealing with Rare Diseases patients. 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters

3. Let the supplementary affidavit be brought on record.

4. It is submitted by Mr. Kirtiman Singh, ld. CGSC that an application was preferred in the LPA pending before the ld. Division Bench, being LPA 364/2023 titled Union of India v. Alishba Khan seeking modification of order dated 3rd May, 2023 passed by this Court seeking exemption from personal appearance of the Secretary, as was directed by this Court. It is his submission that the ld. Division Bench has modified the order to the effect that instead of the Secretary, Ministry of Health and Family Welfare, a Joint Secretary shall remain present in Court. Accordingly, Mr. Rajiv Manjhi, Joint Secretary, Ministry of Health and Family Welfare is present in Court today.

5. It is submitted on behalf of one of the Petitioners that as per an email sent on behalf of Sarepta, the said company is also willing to discuss a subscription model with the Government of India in which the Government can pay annual fees for blocks of patients. It has further been stated in the email that by the end of the year, almost 80 patients of DMD will obtain free of cost medication as part of Sarepta’s clinical trials.

6. The said email has been handed over to Mr. Kirtiman Singh, CGSC for seeking instructions in this regard.

7. On behalf of the BIRAC it is submitted that an affidavit has been filed yesterday i.e. on 9th May, 2023. Let the same be brought on record.

8. On behalf of AIIMS, ld. Counsel Mr. Oberoi submits that thought the funds have been received, the same would be grossly inadequate as there are more than 600-700 patients with rare diseases who are awaiting medicines and therapies. Let a chart be placed on record giving the nature of rare diseases and the number of patients who are awaiting treatment qua each of 2023:DHC:3274 W.P.(C) 5315/2020 & connected matters the diseases on the next date of hearing.

9. List on 15th May, 2023 at 2:30 pm.

PRATHIBA M. SINGH JUDGE MAY 10, 2023 mr/sk