Judicial Analysis Court Copy Headnote Facts Arguments Court observation

2023 Supreme(Del) 4484

IN THE HIGH COURT OF DELHI AT NEW DELHI
Prathiba M. Singh, J.
Master Medhansh Jhawar @ Madhav Through His Natural Guardian – Appellant
Versus
Rajesh Bhushan & Ors. – Respondents
CONT.CAS(C) 415 of 2022 & CM APPL. 18280 of 2022
Decided On : 10-05-2023

Advocates appeared:
CONT.CAS(C) 415/2022 & CM APPL. 18280/2022
Mr. Rahul Malhotra, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI.
Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Advocate for R-2.
Mr. Tanveer Oberoi and Mr. Jaswinder Singh, Advocates, for AIIMS.
Dr. Shefali Gulati in person.
W.P.(C) 5315/2020 & CM APPL. 19189/2020, 4237/2023
Mr. Rahul Malhotra, Advocate, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, Mr. Asif Ahmed, Advocate, for the Petitioner.
Mr. Kirtiman Singh, CGSC, Ms. Vidhi Jain, Advocate for UOI.
Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Advocate for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
Mr. Dharmender Verma and Mr. Vishal Singh, Advocates for BIRAC. Dr. Sheffali Gulati, (AIIMS).
Mr Dharmender Verma Advocate, Mr. Vishal Singh Advocate, Mr. Shantanu Garg Advocate for BIRAC
W.P.(C) 11610/2017 & CM APPL. 27637/2018, 44016/2022
Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sameer Vashisht, ASC (Civil), GNCTD and Mr. Vanshay Kaul, Advocate for R-2.
Mr. Vijay Joshi, Senior Panel Counsel for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
Mr. Saurabh Chauhan & Mr. Varun Jain, Advocates for intervenors.
W.P.(C) 2943/2020 & CM APPLs. 10227/2020, 6633/2022, 7534/2023
Mr. Rahul Malhotra, Advocate, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
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, Advocate for (AIIMS).
W.P.(C) 10782/2020 & CM APPL. 33828/2020
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Ms. Amrita Prakash, CGSC and Mr. Vishal Ashwani Mehta, Advocates, Mr. Tanveer Oberoi, Advocate, for the Respondents.
W.P.(C) 322/2021 & CM APPL. 812/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Ajay Digpaul and Mr. Kamal Digpaul with Ms. Swati Kwatra, Advocates for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 1491/2021 & CM APPLs. 4291/2021, 8671/2022
Mr. Rahul Malhotra, Advocate, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh & Ms. Vidhi Jain, Advocates, for the Respondents.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 1511/2021 & CM APPL. 4331/2021, 8616/2022
Mr. Rahul Malhotra, Advocate, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Rishabh Sahu, Central Govt Senior Counsel with Mr Sameer Sharma, Advocate for UOI.
Mr. Ghanshyam Mishra, Advocate with Mr. Babli Chauhan, Advocate for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 1611/2021 & CM APPL. 4600/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Bharathi Raju, Senior Panel Counsel for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3662/2021 & CM APPLs. 11103/2021, 25590/2021, 32504/2021
Mr. Aditya Chatterjee and Mr. Ishaan Karki, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Anuj Aggarwal, ASC, GNCTD, Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh, Advocates for R-2.
Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Advocate for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3682/2021 & CM APPL. 11153/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. T.P. Singh, Senior Central Govt. Counsel for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3689/2021 & CM APPL.11179/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sanjeev Uniyal and Mr. Dhawal Uniyal, Advs for R-1
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3706/2021 & CM APPL. 11229/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sanjib Kumar Mohanty, Senior Panel Counsel with Mr. Subesh K. Sahood, Advocate for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P. (C) 3707/2021 & CM APPL. 11230/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Siddharth Khatana, Advocate for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3729/2021 & CM APPL. 11269/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3737/2021 & CM APPL. 11277/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Ranvir Singh (CGSC) for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 3859/2021 & CM APPL. 11647/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Anuj Aggarwal, ASC, GNCTD with Ms. Ayushi Bansal, Mr. Sanyam Suri and Ms. Arshya Singh Advocates for R-1 to 5.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 4045/2021 & CM APPL. 12213/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sanjeev Sabharwal, Senior Panel Counsel with Ms. Shweta, Advocate for UOI.
Mr. Harish Kumar Garg and Ms. Khushboo Sharma, Advocates for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 4067/2021 & CM APPL. 12306/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 4259/2021 & CM APPL. 12948/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
Mr. Ripudam Bhardwaj, CGSC with Mr. Vinod Tiwari, Advocate for R-1 & 3.
W.P.(C) 4304/2021 & CM APPL. 13108/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Satya Ranjan, (Senior Panal Counsel) with Mr. Kautilya Birat, Advs for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 4551/2021 & CM APPL. 13949/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Avnish Singh, (SCGC) and Ms. Pushpalata Singh, Advocate, for the Respondents.
W.P.(C) 4551/2021 & CM APPL. 13949/2021 Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 4551/2021 & CM APPL. 13949/2021 W.P.(C) 4812/2021 & CM APPL. 14844/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Ranvir Singh (CGSC) for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 5394/2021 & CM APPL. 16683/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Sh Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, for the Petitioner.
Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 5395/2021 & CM APPL. 16686/2021
Mr. Deepak Somani, Advocate, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Niraj Kumar, Senior Central Govt. Counsel for UOI.
Ms. Arushi Gupta on behalf of Mr. Jawahar Raja, ASC, GNCTD.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 9684/2021
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Divyam Nandrajog, Panel Counsel, GNCTD with Mr. Mayank Kamra, Advocate, for the Respondents.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 14317/2021 & CM APPL. 45148/2021, 14521/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Ripudaman Bhardwaj CGSC with Mr. Kushagra Kumar Advocate for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 1182/2022 & CM APPL. 3442/2022
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sanjeev Uniyal & Mr. Dhawal Uniyal, Advs for R-1.
Mr. Rishikesh Kumar ASC-GNCTD, with Mr Aditya Raj, Mr. Muhammad Zaid, Mr. Sheenu Priya, Mr. Sudhir Kumar Shukla & Mr Sumit Choudhary, (Advocates), for the Respondents.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 1054/2023 and CM APPL. 4164/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
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, Advocate for (AIIMS)
W.P.(C) 1079/2023 and CM APPL. 4248/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh & Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
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, Advocate for (AIIMS)
W.P.(C) 2614/2023
Ms. Sonia Sharma, Ms. Neha Chugh, Mr. Vijay Chandra jha & Mr. Tushant, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Nitinjya Chaudhry, Sr Panel Counsel with Mr. Abhishek, GP., for the Respondent.
Mr. Abhishek Khanna, Advocate for R-1.
Mr. Tanveer Oberoi, Advocate for (AIIMS)
W.P.(C) 4495/2023 & CM APPL.17190/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioners.
Mr. Raj Kumar, Advocate, SPC, UOI.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
W.P.(C) 4502/2023 & CM APPL.17238/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Raj Kumar Yadav, Advocate for UOI.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
W.P.(C) 4526/2023 & CM APPL.17321/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
Mr. Virender Pratap Singh Charak and Ms.Shubhra Parashar Advocates for UOI.
W.P.(C) 4535/2023 & CM APPL.17331/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
Ms Monika Arora ( CGSC), Mr Yash Tyagi, Adv & Mr Subhrodeep, Advocate, for the Respondent.
W.P.(C) 4536/2023 & CM APPL.17333/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Sushil Raaja, SPC, UOI.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
W.P.(C) 4538/2023 & CM APPL.17337/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1.
W.P.(C) 4539/2023 & CM APPL.17340/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1.
W.P.(C) 4591/2023 & CM APPL. 17548/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Mr. Kirtiman Singh, CGSC with Ms. Vidhi Jain, Advocate for UOI.
Ms Monika Arora ( CGSC), Mr Yash Tyagi, Adv & Mr Subhrodeep, Advocate, Mr. Mukul Singh CGSC, Ms. Ira Singh, Advocate for R-1.
W.P.(C) 5102/2023 & CM APPL.19968/2023
Mr. Ashok Agarwal, Mr. Kumar Utkarsh, and Mr. Manoj Kumar, Advocates, Ms. Shyel Trehan, Mr. Rohan Poddar & Ms. Shivalika Rudrabatla, Advocates, for the Petitioner.
Ms. Ritu Reniwal (SPC UOI).
Ms. Prerna Dhall, Advocate of UOI.
W.P.(C) 5726/2023 & CM APPL. 22436/2023
Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advocates, for the Petitioner.
Mr Neeraj, SPC with Mr. Sahaj Garg & Mr Vedansh Anand, Advocates for UOI.
Mr. Tanveer Oberoi, Advocate for (AIIMS).
W.P.(C) 5753/2023 & CM APPL. 22528/2023
Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advocates, for the Petitioner.
Mr Atul Krishna Senior Panel Counsel, Mr Hardik Bedi GP., for UOI.
W.P.(C) 6089/2023 and CM APPL. 23902/2023
Mr. Ashok Agarwal, Mr.Kumar Utkarsh & Mr. Manoj Kumar, Advocates, for the Petitioner.
Mr Atul Krishna Senior Panel Counsel, Mr Hardik Bedi GP., for the Respondent.

The importance of funding for Rare Diseases patients and the modification of court orders regarding personal appearance.

Headnote:
Supplementary Affidavit - Ministry of Health & Family Welfare - The court received a supplementary affidavit showing the release of Rs.40 crores to Centers of Excellence dealing with Rare Diseases patients. The Division Bench modified the order to have a Joint Secretary present in Court instead of the Secretary, Ministry of Health and Family Welfare. Sarepta expressed willingness to discuss a subscription model with the Government of India for free medication for DMD patients.
Fact of the Case:

The Ministry of Health & Family Welfare submitted a supplementary affidavit showing the release of funds to Centers of Excellence for Rare Diseases patients. The Division Bench modified the order regarding the personal appearance of the Secretary, Ministry of Health and Family Welfare. Sarepta expressed willingness to discuss a subscription model with the Government of India for free medication for DMD patients.
Finding of the Court:

The Court received the supplementary affidavit and noted the modification made by the Division Bench. Sarepta's willingness to discuss a subscription model for free medication was also brought to the Court's attention.
Issues: Release of funds for Rare Diseases patients, modification of court order regarding personal appearance, willingness of Sarepta to discuss a subscription model for free medication.
Ratio Decidendi: The Court emphasized the importance of funds for Rare Diseases patients and acknowledged the modification made by the Division Bench. The Court also took note of Sarepta's willingness to discuss a subscription model for free medication.
Final Decision: The case was listed for the next hearing on 15th May, 2023 at 2:30 pm.

JUDGMENT

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.

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 the diseases on the next date of hearing.

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

Click Here to Read the rest of this document

2023 Supreme(Del) 4484

IN THE HIGH COURT OF DELHI AT NEW DELHIPrathiba M. Singh, J.Master Medhansh Jhawar @ Madhav Through His Natural Guardian – AppellantVersusRajesh Bhushan & Ors. – RespondentsCONT.CAS(C) 415 of 2022 & CM APPL. 18280 of 2022Decided On : 10-05-2023

The importance of funding for Rare Diseases patients and the modification of court orders regarding personal appearance.

Related Judgments

Master Medhansh Jhawar @ Madhav Through His Natural Guardian VS Rajesh Bhushan - 2023 Supreme(Del) 4484

Master Medhansh Jhawar VS Rajesh Bhushan - 2023 Supreme(Del) 516

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 - 2023 Supreme(Del) 1140

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

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

YUVAAN SINGH AND ORS. vs UNION OF INDIA AND ORS. - 2025 Supreme(Online)(Cal) 9565

Arnesh Shaw vs Union of India

Arnesh Shaw vs Union of India

Master Arnesh Shaw VS Union of India - 2023 Supreme(Del) 4643

IN THE HIGH COURT OF DELHI AT NEW DELHI
Prathiba M. Singh, J.
Master Medhansh Jhawar @ Madhav Through His Natural Guardian – Appellant
Versus
Rajesh Bhushan & Ors. – Respondents
CONT.CAS(C) 415 of 2022 & CM APPL. 18280 of 2022
Decided On : 10-05-2023