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2023 Supreme(Del) 516

IN THE HIGH COURT OF DELHI AT NEW DELHI
PRATHIBA M. SINGH, J.
Master Medhansh Jhawar – Appellant
Versus
Rajesh Bhushan and Others – Respondents
CONT. CAS(C) 415/2022, CM APPL. 18280/2022, W.P.(C) 5315/2020, CM APPL. 19189/2020, 4237/2023, 7519/2023, W.P.(C) 11610/2017, CM APPL. 27637/2018, 44016/2022, W.P.(C) 2943/2020, CM APPLs. 10227/2020, 6633/2022, 7534/2023, W.P.(C) 10782/2020, CM APPL. 33828/2020, W.P.(C) 322/2021, CM APPL. 812/2021, W.P.(C) 1491/2021, CM APPLs. 4291/2021, 8671/2022, W.P.(C) 1511/2021, CM APPL. 4331/2021, 8616/2022, W.P.(C) 1611/2021, CM APPL. 4600/2021, W.P.(C) 3662/2021, CM APPLs. 11103/2021, 25590/2021, 32504/2021, W.P.(C) 3682/2021, CM APPL. 11153/2021, W.P.(C) 3689/2021, CM APPL.11179/2021, W.P.(C) 3706/2021, CM APPL. 11229/2021, W.P. (C) 3707/2021, CM APPL. 11230/2021, W.P.(C) 3729/2021, CM APPL. 11269/2021, W.P.(C) 3737/2021, CM APPL. 11277/2021, W.P.(C) 3859/2021, CM APPL. 11647/2021, 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, And, W.P.(C) 2614/2023, 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, 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, And, W.P.(C) 5102/2023, CM APPL.19968/2023, W.P.(C) 5726/2023, CM APPL. 22436/2023, W.P.(C) 5753/2023 and CM APPL. 22528/2023
Decided on : 03-05-2023

Advocate Appeared:
Mr. Rahul Malhotra, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, 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.
Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
Mr. Asif Ahmed, Advocate. (M: 9560995495)
Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI.
Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI.
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. (M : 9811101923)
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
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)
Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Ms. Amrita Prakash, CGSC and Mr.
Vishal Ashwani Mehta, Advocates (M: 9818667963).
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Ajay Digpaul and Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI.
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
Mr. Kirtiman Singh & Ms. Vidhi Jain, Advocates (M: 9999359235)
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Rahul Malhotra, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Bharathi Raju, Sr. Panel Counsel for UOI. (M : 9868895906)
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Aditya Chatterjee and Mr. Ishaan Karki, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. T.P. Singh, Sr. Central Govt. Counsel for R-1 (M : 9971579687).
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Sanjeev Uniyal and Mr. Dhawal Uniyal, Advs for R-1 (M : 9560806614).
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Sanjib Kumar Mohanty, Sr. Panel Counsel with Mr. Subesh K. Sahood, Adv. for R-1.
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Siddharth Khatana, Advocate for UOI. (M: 9811132326)
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Ranvir Singh (CGSC) for R-1.(M : 9818071061)
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ripudam Bhardwaj, CGSC with Mr. Vinod Tiwari, Adv. for R-1 & 3.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Satya Ranjan, (Sr. Panal Counsel) with Mr. Kautilya Birat, Advs for UOI.
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Avnish Singh, (SCGC) and Ms. Pushpalata Singh, Advocate. (M: 8826437138)
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Ranvir Singh (CGSC) for R-1.
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Deepak Somani, Advocate.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Adv.
Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Adv. for UOI. Mr. Tanveer Oberoi, Adv. for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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)
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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)
Ms. Sonia Sharma, Ms. Neha Chugh, Mr. Vijay Chandra jha & Mr. Tushant, Advs.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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)
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates. (M: 9811101923)
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Raj Kumar, Advocate, SPC, UOI.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Raj Kumar Yadav, Advocate for UOI. (M: 9818836222)
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Virender Pratap Singh Charak and Ms. Shubhra Parashar Advocates for UOI.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Ms. Monika Arora (CGSC), Mr. Yash Tyagi, Adv & Mr. Subhrodeep, Adv.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Sushil Raaja, SPC, UOI.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Mukul Singh CGSC, Ms. Ira Singh, Adv. for R-1. (M : 9971359513)
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Adv. for UOI.
Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
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.
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advs.;
Ms. Ritu Reniwal (SPC UOI).
Ms. Prerna Dhall, Advocate of UOI. (M: (8920466128)
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. (M : 9811101923);
Mr. Neeraj, Mr. Sahaj Garg & Mr. Vedansh Anand, Advocates for UOI. Mr. Tanveer Oberoi, Advocate for (AIIMS).
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advs. (M : 9811101923);
Mr. Atul Krishna Senior Panel Counsel, Mr. Hardik Bedi GP. (M : 8010414123).

The Court emphasized the need for efficient decision-making by the COE Committee and expressed concern over lapsing budgets and non-release of funds for the treatment of children suffering from Rare Diseases.

Headnote:

Rare Diseases - Approval of COE Committee - [W.P.(C) 5315/2020, W.P.(C) 4495/2023, W.P.(C) 4502/2023, W.P.(C) 4526/2023, W.P.(C) 4535/2023, W.P.(C) 4536/2023, W.P.(C) 4538/2023, W.P.(C) 4539/2023, W.P.(C) 4591/2023, W.P.(C) 5102/2023, W.P.(C) 5726/2023, W.P.(C) 5753/2023, CONT. CAS(C) 415/2022, W.P.(C) 4045/2021, W.P.(C) 4067/2021, W.P.(C) 4259/2021, W.P.(C) 4304/2021, W.P.(C) 4551/2021, W.P.(C) 4812/2021, W.P.(C) 5394/2021, W.P.(C) 5395/2021, W.P.(C) 9684/2021, W.P.(C) 14317/2021, W.P.(C) 1182/2022, W.P.(C) 1054/2023, W.P.(C) 1079/2023, W.P.(C) 2614/2023] - The Court approved the constitution of the Centre of Excellence (COE) Rare Diseases Committee by AIIMS, subject to the condition that the decisions shall not be delayed by the size of the Committee.

Fact of the Case:

The petitioners, children suffering from Rare Diseases, sought treatment and availability of medicines, leading to the approval of the COE Committee by the Court.

Finding of the Court:

The Court approved the COE Committee and directed examination of the children within a week for treatment feasibility. It also expressed concern over lapsing budgets and non-release of funds, and compelled the Secretary, Ministry of Health & Family Welfare to remain present in Court.

Issues: Availability of treatment and medicines for children suffering from Rare Diseases, lapsing budgets, and non-release of funds.

Ratio Decidendi: The Court emphasized the need for efficient decision-making by the COE Committee and expressed concern over lapsing budgets and non-release of funds for the treatment of children suffering from Rare Diseases.

Final Decision: The Court approved the COE Committee, directed examination of the children for treatment feasibility, and compelled the Secretary, Ministry of Health & Family Welfare to remain present in Court. It also considered the possibility of issuing a notice of contempt and directed the physical evaluation of children who had been administered medicines.

JUDGMENT :

Prathiba M. Singh, J.

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 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, Dept. of Endocrinology

Member

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

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

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        The fundamental right to health and healthcare under Article 21 of the Constitution necessitates ensuring treatment for Rare Diseases despite exorbitant costs, and the government's obligation to fina....
        Master Medhansh Jhawar @ Madhav Through His Natural Guardian VS Rajesh Bhushan - 2023 Supreme(Del) 245

        Master Medhansh Jhawar @ Madhav Through His Natural Guardian VS Rajesh Bhushan - 2023 Supreme(Del) 245

        Master Medhansh Jhawar @ Madhav Through His Natural Guardian . VS Rajesh Bhushan & Ors - 2023 Supreme(Del) 2822

        Master Medhansh Jhawar @ Madhav Through His Natural Guardian . VS Rajesh Bhushan & Ors - 2023 Supreme(Del) 2822

        The government has an obligation to invest in research for indigenous therapies, and the court can direct the commencement of treatment and release of funds for rare diseases treatment under the Rare....
        Master Arnesh Shaw VS Union of India - 2024 Supreme(Del) 688

        Master Arnesh Shaw VS Union of India - 2024 Supreme(Del) 688

        The court prioritized the expedited release of medicines for rare diseases and facilitated discussions and meetings between relevant parties to ensure the availability of treatment for petitioners.
        ARIF S/O MOHAMMED ASHRAF VS STATE OF KERALA - 2022 Supreme(Ker) 322

        ARIF S/O MOHAMMED ASHRAF VS STATE OF KERALA - 2022 Supreme(Ker) 322

        Facilities for treatment of rare diseases would not be in place in the State in the near future without judicial interference.
        State of Madhya Pradesh VS Prajwal Shrikhande - 2021 Supreme(MP) 117

        State of Madhya Pradesh VS Prajwal Shrikhande - 2021 Supreme(MP) 117

        The right to health is an integral part of the right to life under Article 21 of the Constitution, and the Central and State Governments have a duty to protect the life of citizens, especially childr....
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