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

Delhi High Court · 03 May 2023 · 2023:DHC:3048
Prathiba M. Singh
W.P.(C) 5315/2020 & connected matters
2023:DHC:3048
constitutional other Significant

AI Summary

Delhi High Court directs prompt release of funds and approves a larger Rare Diseases Committee at AIIMS to ensure timely treatment of children with rare diseases, emphasizing State accountability and efficient administrative action.

Full Text
Translation output
2023:DHC:3048
W.P.(C) 5315/2020 & connected matters
HIGH COURT OF DELHI
Date of Decision: 3rd 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 (M:9958935556) and Mr. Jaswinder Singh, Advocate
(M:9811232066)
Dr. Shefali Gulati in person.
WITH
JUDGMENT

(21) WITH + W.P.(C) 5315/2020 & CM APPL. 19189/2020, 4237/2023, 7519/2023 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. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI. Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters Mr. Ripu Daman Bhardwaj, CGSC for UOI. (M:9818030700) Mr. Tanveer Oberoi, Adv. for (AIIMS). Mr. 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). (22) 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. (M: 9811101923) 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. (M:

9971540730) (23) 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. 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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). (24) 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 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. for (AIIMS). (25) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters (AIIMS). (26) 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, Advocates (M: 9999359235) Mr. Tanveer Oberoi, Adv. for (AIIMS). (27) 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

38,638 characters total

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). (28) 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. 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters versus UNION OF INDIA & ANR...... Respondents Through: Mr. Bharathi Raju, Sr. Panel Counsel for UOI. (M:9868895906) Mr. Tanveer Oberoi, Adv. for (AIIMS). (29) 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. 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). (30) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters (AIIMS). (31) 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.

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). (32) 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). (33) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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). (34) 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). (35) 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). 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters (36) 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.

VERSUS

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). (37) 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). (38) WITH + W.P.(C) 4067/2021 & CM APPL. 12306/2021 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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 (AIIMS). (39) 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. (40) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (41) 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. 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). (42) 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). (43) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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). (44) WITH + W.P.(C) 5395/2021 & CM APPL. 16686/2021 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). (45) 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). 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters (46) 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.

VERSUS

UNION OF INDIA & ANR...... Respondents Through: Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). (47) 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). (48) WITH + W.P.(C) 1054/2023 and CM APPL. 4164/2023 MASTER TUSHAR THROUGH HIS NEXT FRIEND AND 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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 Mr Hardik Bedi GP for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS) (49) 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) (50) 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. 23:35 2023:DHC:3048 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. Nitinjya Chaudhry, Sr Panel Counsel with Mr. Abhishek, GP (M- 9810103680). Mr. Abhishek Khanna, Adv. for R-1. Mr. Tanveer Oberoi, Adv. for (AIIMS) (51) 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. (52) 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. 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters Vidhi Jain, Adv. for UOI. (53) 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 & 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. (54) 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. (55) WITH + W.P.(C) 4536/2023 & CM APPL.17333/2023 MADHAV SHARMA THROUGH HIS NEXT FRIEND AND NATURAL 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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. Vidhi Jain, Adv. for UOI. (56) 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) (57) 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 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI. Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1. (58) 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, 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. (59) 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) (97) WITH + W.P.(C) 5726/2023 & CM APPL. 22436/2023 MASTER HARENDER THROUGH HIS NEXT FRIEND AND 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 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, Mr Sahaj Garg & Mr Vedansh Anand, Advocates for UOI. Mr. Tanveer Oberoi, Advocate for (AIIMS). (100) AND + W.P.(C) 5753/2023 & CM APPL. 22528/2023 VINAY THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.

VERSUS

8010414123) 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 has been filed by the Petitioners who are children suffering from Rare Diseases. The case of the Petitioners is that medicines and therapies for the said diseases are exorbitantly expensive. These matters have been heard by the Court from time to time and various directions have been issued for enabling treatment and making medicines 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters available to the Petitioners. CM APPL. 7519/2023 in W.P.(C) 5315/2020

3. This is an application filed by AIIMS, New Delhi seeking permission to constitute the Centre of Excellence (COE) Rare Diseases Committee in place of the “two-member Rare Disease Committee” which was constituted pursuant to the directions passed by the Court on 23rd March, 2021.

4. It is submitted by Mr. Oberoi, ld. Counsel on behalf of AIIMS as also by Dr. Madulika Kabra, who has appeared virtually before the Court, that after the constitution of the two-member Rare Diseases Committee by this Court, since AIIMS was also notified as a Centre of Excellence under the National Policy for Rare Diseases, 2021, the Committee for Rare Diseases was constituted afresh within AIIMS, New Delhi. As on today, the proposed new COE Committee is as under: Core Committee: S.No. Name Designation

1. Dr. Madhulika Kabra Professor, Deptt. of Pediatrics & Head, Genetics Division Chairperson

2. Dr. Arvind Bagga Prof. & Head, Department of Pediatrics Member

3. Dr. Sidhartha Satpathy Prof. & Head, Deptt. of Hospital Administration Member

4. Dr. Vineet Ahuja Professor, Deptt. of Gastroenterology Member

5. Dr. Rakesh Lodha Professor, Deptt. of Pediatrics Member

6. Dr. Rajesh Khadgawat Professor, Member 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters Dept. of Endocrinology

7. Dr. Tulika Seth Professor, Deptt. of Hematology Member

8. Dr. Jitender Sodhi Assoc. Professor, Deptt. of Hosp. Admn. (Representative of M.S.) Member

9. Dr. Kanika Jain Asst. Professor, Deptt. of Hosp. Admn. (Representative of Stores) Member

10. Financial Advisor or his representative Member

11. F&CAO (Hospital Billing Section) Member

12. Administrative Officer, Legal Cell Member

13. Dr. Neerja Gupta Addl. Professor, Deptt. of Pediatrics Member Secy.

5. Upon a query being put to the ld. Counsel and also to Dr. Kabra as to how such a large Committee would be efficient especially in treatment of urgent cases of children with rare diseases, an assurance has been given by Dr. Kabra that the working of this Committee would be efficient and the number of members in the Committee would not in any way act as an impediment in taking quick decisions.

6. It is made clear that the proposal which has been put up by AIIMS has been approved by the Court subject to the condition that the decisions to be taken by the Rare Diseases Committee shall not be delayed or impeded in any manner by the size of the Committee.

7. The Committee is approved in the above terms.

8. The application is disposed of. W.P.(C) 4495/2023 & CM APPL.17190/2023 W.P.(C) 4502/2023 & CM APPL.17238/2023 W.P.(C) 4526/2023 & CM APPL.17321/2023 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters W.P.(C) 4535/2023 & CM APPL.17331/2023 W.P.(C) 4536/2023 & CM APPL.17333/2023 W.P.(C) 4538/2023 & CM APPL.17337/2023 W.P.(C) 4539/2023 & CM APPL.17340/2023 W.P.(C) 4591/2023 & CM APPL. 17548/2023 W.P.(C) 5102/2023 & CM APPL.19968/2023 W.P.(C) 5726/2023 & CM APPL. 22436/2023 W.P.(C) 5753/2023 & CM APPL. 22528/2023

9. Issue notice in these petitions. Let the said children be examined in AIIMS within the next one week and a report be filed by the next date of hearing as to the feasibility of providing treatment to them.

10. List on 10th May, 2023 at 3:30 p.m. CONT.CAS(C) 415/2022 & CM APPL. 18280/2022 W.P.(C) 4045/2021 & CM APPL. 12213/2021 W.P.(C) 4067/2021 & CM APPL. 12306/2021 W.P.(C) 4259/2021 & CM APPL. 12948/2021 W.P.(C) 4304/2021 & CM APPL. 13108/2021 W.P.(C) 4551/2021 & CM APPL. 13949/2021 W.P.(C) 4812/2021 & CM APPL. 14844/2021 W.P.(C) 5394/2021 & CM APPL. 16683/2021 W.P.(C) 5395/2021 & CM APPL. 16686/2021 W.P.(C) 9684/2021 W.P.(C) 14317/2021 & CM APPL. 45148/2021, 14521/2023 W.P.(C) 1182/2022 & CM APPL. 3442/2022 W.P.(C) 1054/2023 and CM APPL. 4164/2023 W.P.(C) 1079/2023 and CM APPL. 4248/2023 W.P.(C) 2614/2023

11. On 15th February, 2023, Minutes of Committee Meeting of BIRAC 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters dated 2nd February, 2023 were placed on record of the Court. As per the said minutes, BIRAC was bound by the Biotechnology Industry Partnership Programme (BIPP) and the Grant-in-aid Letter Agreement (GLA) and that it was mandatory for Hanugen to contribute 50% of the total project cost. On 6th March, 2023, the Court had referred the entire matter for developing indigenous therapies for rare diseases with Hanugen to the National Consortium for Research and Development on Therapeutics for Rare Diseases and directed it to place its recommendations before the Court.

12. On 20th April, 2023, the Court was informed that the ICMR is willing to fund the on-site trials directly, however, the manufacturing of the drug would have to be carried out by the company concerned and the cost of the same would also have to be borne by the said company. Accordingly, the Court had directed Hanugen to place its stand on record. The relevant portion of the order dated 20th April, 2023 reads as under:

“5. On behalf of ICMR, Dr. Nabendu Shekhar Chatterjee from ICMR is present in court, who submits that ICMR is willing to fund the on-site trials directly. However, the manufacturing of the drug would have to be carried out by the company concerned and the cost for the same has to be borne by the said company. 6. Today, the Court is being held virtually. The matter would require detailed hearing, inasmuch as the National Consortium’s report has also been placed on record. 7. In view of the submission of Dr. Nabendu Sekhar Chatterjee, let Hanugen Therapeutics place on record its affidavit as to whether it can fund the manufacturing of drugs or not by the next date of hearing.”

13. Today, ld. Counsel appearing for BIRAC submits that Hanugen Therapeutics has contacted BIRAC and informed that it has arranged its 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters share of the funds in terms of the GLA and that BIRAC is also willing to continue to honour the said agreement insofar as the trials and funding of the same by ICMR is concerned.

14. Ms. Trehan, ld. Amicus Curiae submits that Hanugen is intending to hold a meeting with ICMR in order to understand how the on-site trials can be funded by ICMR. The ld. Amicus Curiae also submits that Hanugen is in the process of arranging funds for its share of the amounts in terms of the GLA.

15. Accordingly, let Hanugen, BIRAC and ICMR file their respective affidavits by the next date of hearing as to how they intend to move forward both qua the GLA as also the funding by ICMR of the on-site trials.

16. A complete chart of the treatment which has been given to all the Petitioners in these cases is set out below: Petitioners Suffering from Duchenne Muscular Dystrophy (DMD)

S. No. Case No. Petitioner Name Last Date of Administration of medicine Status of treatment 1 W.P.(C) 5315/2020 Master Arnesh Shaw 17-04-2023 Doses exhausted 2 W.P.(C) 322/2021 Keshav Sharma 10-04-2023 Doses exhausted 3 W.P.(C) 1611/2021 Lakshya Kumar Goyal 20-04-2023 Doses exhausted 4 W.P.(C) 3682/2021 Harshit Soni 08-04-2023 Doses exhausted 5 W.P.(C) 3689/2021 Dhananjay Bhardwaj 13-04-2023 Doses exhausted 6 W.P.(C) 3729/2021 Manish 18-05-2023 Receiving treatment 7 W.P.(C) 3729/2021 Chirag 01-06-2023 Receiving treatment 8 W.P.(C) Siddharath 15-05-2023 Receiving 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 3859/2021 Swarankar treatment 9 W.P.(C) 4067/2021 Anshu 27-04-2023 Doses exhausted 10 W.P.(C) 4259/2021 Ishaan 08-04-2023 Doses exhausted 11 W.P.(C) 4812/2021 Nikhil Yogender Singh 05-04-2023 Doses exhausted 12 W.P.(C) 5394/2021 Udayveer Singh Guleria 09-05-2023 Receiving treatment 13 W.P.(C) 5395/2021 Master Ayushman Chaturvedi 11.04.2023 Doses exhausted 14 W.P.(C) 14317/2021 Shreyansh Aarav 03.04.2023 Doses exhausted 15 W.P. (C) 3737/2021 Shourya Maru - Eligible for both Sarepta and DART trial 16 W.P. (C) 3707/2021 Aarav Garg - child in UK, counselled about the treatment. Eligible for clinical trial 17 W.P.(C) 10782/2020 Aviraj Garg - Enrolled in Sarepta trial. 18 W.P.(C) 2614/2023 Karan - DMD patient, nonamenable to treatment. 19 W.P.(C) 3706/2021 Khushwant Bhardwaj - DMD patient, nonamenable to treatment 20 W.P.(C) 4045/2021 Utkarsh Indrajit Pawar - DMD patient, nonamenable to treatment 21 W.P.(C) 4551/2021 Shaurya Dahiya - DMD patient, nonamenable to treatment 22 W.P.(C) 1079/2023 Rudra Pawar - DMD patient, nonamenable to treatment 23 W.P.(C) 4304/2021 Tanav Handoo - DMD patient, nonamenable to treatment 24 W.P.(C) 3706/2021 Khushwant Bhardwaj - DMD patient, nonamenable to 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters 25 W.P.(C) 1054/2023 Master Tushar - Petitioner has been examined, Rs.50 lacs yet to be received. 26 W.P.(C) 4495/2023 Paras Jain - Examination yet to be done, Rs.50 lacs yet to be received. 27 W.P.(C) 4502/2023 Shreyansh Verma - Examination yet to be done, Rs.50 lacs yet to be received. 28 W.P.(C) 4526/2023 Master Lakshyaved Kalisharan - Examination yet to be done, Rs.50 lacs yet to be received. 29 W.P.(C) 4535/2023 Master Chinmay Barupal - Examination yet to be done, Rs.50 lacs yet to be received. 30 W.P.(C) 4536/2023 Madhav Sharma - Examination yet to be done, Rs.50 lacs yet to be received. 31 W.P.(C) 4538/2023 Sandeep Kalia - Examination yet to be done, Rs.50 lacs yet to be received. 32 W.P.(C) 4539/2023 Rajveer Srivastava - Examination yet to be done, Rs.50 lacs yet to be received. 33 W.P.(C) 4591/2023 Vansh - Examination yet to be done, Rs.50 lacs yet to be received. 34 W.P.(C) 5102/2023 Pranshu Namdar - Examination yet to be done, Rs.50 lacs yet to be received. 35 W.P.(C) 5726/2023 Master Harender - Examination yet to be done, Rs.50 lacs yet to be received.

36. W.P.(C) 5726/2023 Master Virender - Examination yet to be done, Rs.50 lacs yet to be received.

37. W.P.(C) 5753/2023 Vinay - Examination yet to be done, Rs.50 lacs yet to be received. 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters Petitioners Suffering from diseases other than DMD

S. No. Case No. Petitioner Name Last Date of

38. W.P.(C) 9684/2021 Aadhyan Jaiswal Atypical HUS By letter dated 07.02.2023 the patients father informed AIIMS that he was able to procure the medicines at a considerably lower cost than the cost at which AIIMS had received the supply. Accordingly, the vials procured by AIIMS were returned and the retender was initiated.

39. W.P.(C) 1182/2022 Insha Gaucher Disease Drugs procured from all the fund received. Treatment ongoing.

40. W.P.(C) 2943/2020 Alishba Khan Gaucher Disease Funds received utilised and no funds left to procure more drug. Treatment stopped since January, 2023.

41. W.P.(C) 1491/2021 Master Medhansh MPS II Drugs procured from all the fund received. Treatment ongoing.

42. W.P.(C) 1511/2021 Master Kenit MPS II Was on ERT since March 2022 till 27.3.23 through funds generated by crowd funding by parents

43. W.P.(C) 3662/2021 Payel Bhattacharya neuroendocrine cancer for evaluation management.

17. As can be seen from the above chart, in respect of a large number of children, the treatment has commenced upon the release of the sum of Rs.50,00,000/- in terms of the National Policy for Rare Disease qua the said Petitioner. However, in respect of some of the children, even the initial sum of Rs.50,00,000/- has not been received yet. Accordingly, in respect of the Petitioners at serial nos.25 to 37, the sum of Rs.50,00,000/- each shall now 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters be released within a period of one week to AIIMS, New Delhi.

18. In the meantime, order for the supply of medicines for these children shall be placed by AIIMS with the supplier so that by the time the funds are received, medicines can also be received and the treatment can be commenced immediately.

19. Insofar as those children for whom the funds are stated to have been exhausted, a number of parents and counsels have made submissions today. Illustratively, in respect of Alishba Khan, the Petitioner in W.P.(C) 2943/2020, it is submitted that since the treatment was stopped in January, 2023, she has lost her hearing capacity and had to undergo surgery in AIIMS.

20. In respect of Master Keshav Sharma, the Petitioner in W.P.(C) 322/2021, his father is present in Court and submits that he is now almost bed ridden and his mobility has been severely impaired and he can only walk with support now.

21. Insofar as the Petitioner in W.P.(C) 5395/2021, i.e., Master Ayushman Chaturvedi is concerned, his parents have complained that out of the entire doses that was to be administered, one vial has not been administered and the treatment has since stopped as of 11th April, 2023. Dr. Kabra and Dr. Kanika from AIIMS, who have appeared virtually, seek to explain the same by stating that there was a shortage in the vial which was received from the supplier and they are following up with the supplier for the same.

22. In the present batch of cases, the Court faces an extreme situation where almost 40 children who are before the Court, are likely to suffer physical and mental injury and deterioration of health if further funds are not 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters released for their treatment.

23. It has been noticed vide orders dated 23rd March, 2021 and 30th January, 2023 that a large amount of funds were, in fact, allocated for rare diseases. However, the budgets lapsed and the amounts were not released. Repeated orders of this Court for release of further amounts have not been acceded to by the Ministry.

24. The budgeted amounts which had lapsed are discussed in order dated 23rd March, 2021 which reads as under:

“14. Insofar as the Ministry of Health and Family Welfare, Union of India, is concerned, in terms of the order dated 2nd March 2021, a short affidavit in respect of the budget that was allocated for Health and specifically directed for Rare Diseases has been filed. The relevant extract from the said affidavit which has been deposed by Mr. Pulkesh Kumar, Deputy Secretary, Ministry of Health & Family Welfare, are set out below: “3. That the name of the scheme under which assistance is being provided is by the name "Assistance for Hospitalization of Poor Patients Suffering from Rare-Diseases" which is a component of the scheme namely Rashtriya Arogya Nidhi (RAN) which was specifically introduced in RE 2018-19. 4. That further, the details of BE, RE and expenditure in respect of rare diseases component under the Umbrella Scheme of Rashtriya Arogya Nidhi (RAN) are as under: (in Rs. crore)
Sr. No. Year Budget Estimate (BE) Revised Estimates (RE) Expenditure 1 2018-19 Nil 7.50 Nil 2 2019-20 100.00 25.00 1.30 3 2020-21 77.32 10.00 5.90 4 2021-22 25.00 Nil Nil 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters
5. It may be seen from the above table that: i. In the year 2018-19, allocation for the component for rare diseases was 7.50 crore at RE stage. However, no expenditure was made; ii. In the year 2019-20, allocation for the rare diseases was 100.00 crore at BE, 25.00 crore at RE stage and the expenditure was 1.30 crore; iii. In the year 2020-21, allocation for the rare diseases was 77.32 crore at BE, 10.00 crore at RE stage and the expenditure till date is 5.90 crore; iv. In the year 2021-22, allocation for the rare disease is 25.00 crore under BE.”’” xxx

18. Secondly, the affidavit of Ministry of Health and Family Welfare, Union of India, also reveals that almost Rs. 200 crores were budgeted for the purpose of expenditure in respect of Rare Diseases. The affidavit shows that the expenditure that has already been incurred is only to the tune of Rs.[7] crores over the last three years.”

25. A perusal of the above would show that the lapse of budget has also been confirmed in the affidavit by Ministry of Health and Family Welfare, Union of India to the tune of almost Rs. 193 crores. The said affidavit also demonstrated that as against the elapsed budget, only a sum of Rs.[7] crores was spent between 2018 till 2021.

26. Vide orders dated 15th February, 2023, further amount of Rs.[5] crores was directed to be released by the Ministry of Health & Family Welfare, Union of India. The said direction was reiterated in order dated 6th March,

2023. However, the said amount has not been released till date.

27. The Union of India has also filed LPA 364/2023 titled Union of India v. Alishba Khan before the ld. Division Bench of this Court, challenging the above two orders. This Court has been informed that no stay on the said two 23:35 2023:DHC:3048 W.P.(C) 5315/2020 & connected matters orders has been granted and the ld. Division Bench has also clarified that the pendency of the LPA would not come in the way of this Court hearing the matters further.

28. Under such circumstances, the Court cannot turn a blind eye to the medical condition of 40 children who are Petitioners before the Court. The medicines which have already been administered, their effectiveness would also be completely obliterated if further doses are not continued for the said children.

29. Under these circumstances, the Secretary, Ministry of Health & Family Welfare shall physically remain present in Court on the next date of hearing.

30. On the next date, the Court shall consider whether notice of contempt ought to be issued in these matters.

31. Insofar as the case of Master Ayushman Chaturvedi is concerned, the Court is compelled to observed that the Rare Diseases Committee in AIIMS, New Delhi is expected to act with alacrity in all these matters and not to take matters in a cavalier manner.

32. Let the said vial be obtained from the supplier and be administered as expeditiously as possible.

33. All the children who have been administered the medicines shall also be physically evaluated and a status report of their medical condition shall be placed on record by the next date of hearing.

34. List on 10th May, 2023 at 3:30 p.m. PRATHIBA M. SINGH JUDGE MAY 03, 2023 dj/sk 23:35