Full Text
HIGH COURT OF DELHI
Date of Decision: 1st March, 2023
MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS NATURAL GUARDIAN ..... Petitioner
Through: Mr. Rahul Malhotra & Ms. Tanya Kumari, Advocates.
Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
Through: Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI.
Mr. Tanveer Oberoi (M:9958935556) and Mr. Jaswinder Singh, Advocate
(M:9811232066)
JUDGMENT
(22) WITH + W.P.(C) 5315/2020 & CM APPL. 19189/2020, 4237/2023, 7519/2023 MASTER ARNESH SHAW..... Petitioner Through: Mr. Rahul Malhotra & Ms. Tanya Kumari, Advocates. Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Ms. Nidhi Raman CGSC with Mr. Rudra Paliwal, Advocates. Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI. Mr. Ripu Daman Bhardwaj, CGSC for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS). Mr. Dharmender Verma & Mr. Abhishek Yadav, Advocates for BIRAC. (M: 9171856779) Dr. Kanika, AIIMS. Dr. Madhulika Kabra, (AIIMS). 2023/DHC/001524I W.P.(C) 5315/2020 & connected matters Dr. Sheffali Gulati, (AIIMS). Mr. Rajiv Manjhi, Joint Secretary, Ministry of Health and Family Welfare. Mr. Arvind Singh Tanwar, Official from the Ministry. (23) 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 Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA AND ANR...... Respondents Through: Mr. Sameer Vashisht, ASC, Civil GNCTD with Ms. Sanjana Nangia, Advocates (M:8287936603). Mr. Vijay Joshi, Sr. Panel Counsel of UOI with Mr. Shubham Chaturvedi, Advocate. Mr. Saurabh Chauhan, Mr. Varun Jain, Advocates for the Intervenors (24) WITH + W.P.(C) 2943/2020 & CM APPLs. 10227/2020, 6633/2022, 7534/2023 ALISHBA KHAN..... Petitioner Through: Mr. Rahul Malhotra & Ms. Tanya Kumari, Advocates. Adv.
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). (25) WITH 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.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Amrita Prakash, CGSC and Mr. Vishal Ashwani Mehta, Advocates (M:9818667963). (26) 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: Ms. Archana Sachdeva, Advocates (Mob No. 9818758576), Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar (M:9811101923) Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Ajay Digpaul and Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI. (27) WITH + W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022 MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner Through: Mr. Rahul Malhotra & Ms. Tanya Kumari, Advocates. Adv. W.P.(C) 5315/2020 & connected matters UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh & Ms. Vidhi Jain, Advocates (M: 9999359235) (28) WITH + W.P.(C) 1511/2021 & CM APPL. 4331/2021, 8616/2022 MASTER KENIT JHAWAR @ KESHAV..... Petitioner Through: Mr. Rahul Malhotra, Advocate. Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Rishabh Sahu, Central Govt Sr. Counsel with Mr Sameer Sharma, Adv. for UOI. Mr. Ghanshyam Mishra, Advocate for R-1. (M: 9899794006) (29) WITH + W.P.(C) 1611/2021 & CM APPL. 4600/2021 LAKSHYA KUMAR GOYAL, 8 YRS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Bharathi Raju, Sr. Panel Counsel with Mr. Rohit Singh, Advocate for UOI. (M:9868895906) (30) 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. W.P.(C) 5315/2020 & connected matters Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
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. Ripu Daman Bhardwaj (CGSC) for UOI. (31) WITH + W.P.(C) 3682/2021 & CM APPL. 11153/2021 HARSHIT SONI, 16 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. T.P. Singh, Sr. Central Govt. Counsel for R-1 (M:9971579687). (32) WITH + W.P.(C) 3689/2021 & CM APPL.11179/2021 DHANANJAY BHARDWAJ, 11 YEARS OLD, THROUGH HIS NEXT FRIEND ND NATURAL FATHER SH. AMIT KUMAR..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh and Mr. Manoj Kumar, Advocates (M:9662778086). Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Sanjeev Uniyal and Mr. Dhawal W.P.(C) 5315/2020 & connected matters Uniyal, Advs for R-1 (M:9560806614). (33) 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 Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (34) 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 Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Siddharth Khatana, Advocate for UOI. (M:9811132326) (35) WITH + W.P.(C) 3729/2021 & CM APPL. 11269/2021 MANISH, 8 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents 2023/DHC/001524I W.P.(C) 5315/2020 & connected matters Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (36) WITH + W.P.(C) 3737/2021 & CM APPL. 11277/2021 SHOURYA MARU, 7 YEARS OLD, FATHER SH.
KAMAL KUMAR MARU..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Ranvir Singh (CGSC) for R-1. (M:9818071061) (37) WITH + W.P.(C) 3859/2021 & CM APPL. 11647/2021 SIDDHARTH SWARNKAR, 9 YEARS OLD, FATHER SH.
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). (38) 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: Ms. Shyel Trehan, Amicus Curiae W.P.(C) 5315/2020 & connected matters with Mr. Ms. Shivalika Rudrabatla, Adv.
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). (39) 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 and Mr. Manoj Kumar, Advocates (M:9662778086). Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (40) WITH + W.P.(C) 4259/2021 & CM APPL. 12948/2021 ISHAAN, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
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. (41) 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 Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Satya Ranjan, (Sr. Panal Counsel) with Mr. Kautilya Birat, Advs for UOI. (42) WITH + W.P.(C) 4551/2021 & CM APPL. 13949/2021 SHAURYA DAHIYA, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Avnish Singh, (SCGC) and Mr. Aditya Vikram Dembela, Advocates. (M:8826437138) (43) 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 Ms. Shyel Trehan, Amicus Curiae 2023/DHC/001524I W.P.(C) 5315/2020 & connected matters with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Ranvir Singh (CGSC) for R-1. (44) WITH + W.P.(C) 5394/2021 & CM APPL. 16683/2021 UDAYVEER SINGH GULERIA, 7 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Tanveer Oberoi, Adv. for (AIIMS). (45) WITH + W.P.(C) 5395/2021 & CM APPL. 16686/2021 MASTER AYUSHMAN CHATURVEDI..... Petitioner Through: Mr. Ashok Agarwal, Mr. Kumar Mr. Anurag Ojha & Deepak Somani, Advocate. Mr. Niraj Kumar, Sr. CGSC. Adv.
VERSUS
UNION OF INDIA & ORS...... Respondents Through: Mr. Niraj Kumar, Sr. Central Govt. Counsel for UOI. Mr. Jawahar Raja, ASC (C) with Ms. Moksha Sharma, Adv. for GNCTD. Mr. G.D. Sharma, Advocate for R-4. W.P.(C) 5315/2020 & connected matters (46) 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 Adv.
VERSUS
UNION OF INDIA & ORS...... Respondents Through: Mr. Divyam Nandrajog, Panel Counsel, GNCTD, Mr. Mohd. Shahid Khan, Mr. Mayank Kamra, Advs. (47) WITH + W.P.(C) 14317/2021 & CM APPL. 45148/2021 SHREYANSH AARAV, 11 YEARS OLD, THROUGH HIS NEXT FRIEND AND NATURAL MOTHER SMT.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Ripu Daman Bhardwaj (CGSC) for UOI. (48) 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 W.P.(C) 5315/2020 & connected matters Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ORS...... Respondent Through: Mr. Sanjeev Uniyal & Mr. Dhawal Uniyal, Advs for R-1. (M:9560806614) (49) 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 Ms. Shyel Trehan, Amicus Curiae with Mr. Ms. Shivalika Rudrabatla, Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI. Mr. Ripu Dhawan Bhardwaj, CGSC with Mr. Hardik GP for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS) (50) 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 Adv.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI. Mr. Ripu Dhawan Bhardwaj, CGSC with Mr. Hardik GP for UOI. W.P.(C) 5315/2020 & connected matters Mr. Tanveer Oberoi, Adv. for (AIIMS) (60) AND + W.P.(C) 2614/2023 KARAN, 14 YEARS OLD THROUGH HIS NEXT FRIEND AND NATURAL FATHER SH.
VERSUS
UNION OF INDIA & ANR...... Respondents Through: Mr. Nitinjya Chaudhry, Sr Panel Counsel with Mr. Abhishek, GP (M- 9810103680). Mr. Tanveer Oberoi, Adv. for (AIIMS) 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 mostly 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 available to the Petitioners.
3. The following doctors from AIIMS have appeared:
(i) Dr. Madhulika Kabra
(ii) Dr. Sheffali Gulati
(iii) Dr. Kanika
4. Pursuant to the previous order dated 15th February, 2023, affidavits have been filed by the Drugs Controller General of India (DCGI) and the Ministry of Health and Family Welfare, Union of India.
5. Mr. Rajiv Manjhi Joint Secretary, Ministry of Health and Family Welfare, Union of India submits that as per the Ministry’s policy only Rs.50,00,000/- can be released per patient.
6. As per the queries raised and the submissions made, it appears to the Court that a number of clinical trials have been approved by the DCGI in India for Duchenne Muscular Dystrophy (DMD) and for Gaucher disease and candidates in India, have been enrolled. In fact some trials are also stated to have been completed. Dr. Gulati has informed that some of the candidates for the trials have been enrolled at AIIMS, Delhi itself. However, the said information about the trials was not informed to the Court over the last two years when these matters have been under consideration. It is noted with some consternation that even the DCGI has not placed all the facts before the Court in respect of the approved trials or the trials pending consideration.
7. The Court is currently in the process of ascertaining all the facts relating to clinical trials and the requirements of the Petitioners who are almost 30 in number and are suffering from rare diseases etc.
8. Today, the hearing was inconclusive. In order to have an effective further hearing the following directions are issued:
(i) The team from AIIMS who is present before the Court today shall place on record a complete chart of all the clinical trials in which AIIMS is involved for the two medical conditions i.e. W.P.(C) 5315/2020 & connected matters DMD and Gaucher. The said chart shall deal with the feasibility of enrolment of all the Petitioners in the said clinical trials.
(ii) The DCGI shall also place on record a complete chart of all the trials which have been approved or are pending approval in respect of DMD and Gaucher.
(iii) The Ministry of Health and Family Welfare, Union of India shall specifically consider the case of Alishba Khan who has already started treatment for DMD but her treatment has been stopped due to non-release of further funds and place its stand on record on the next date of hearing.
(iv) All officials from DCGI, Ministries, lawyers and doctors from
AIIMS shall appear physically on the next date of hearing as due to the large number of issues and the number of lawyers appearing, a virtual hearing is not feasible.
9. List on 6th March, 2023 at 4 pm.
PRATHIBA M. SINGH JUDGE MARCH 1, 2023 Rahul/dj/kt