Delhi High Court - Orders
Insha Minor Through Her Next Friend And ... vs Dr D K Sharma on 5 August, 2022
Author: Yashwant Varma
Bench: Yashwant Varma
$~1 & 21 to 48
* IN THE HIGH COURT OF DELHI AT NEW DELHI
+ CONT.CAS(C) 722/2022
INSHA MINOR THROUGH HER NEXT FRIEND AND
NATURAL FATHER SH.IRSHAD AHMAD SOFI..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj, Advs.
versus
DR D K SHARMA ..... Respondent
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
Mr.Balendu Shekhar, CGSC with
Mr.Krishna Chaitanya and Mr.Raj
Kumar Maurya, Advs. for R-2.
+ CONT.CAS(C) 415/2022 & CM APPL. 18280/2022
MASTER MEDHANSH JHAWAR @ MADHAV THROUGH HIS
NATURAL GUARDIAN ..... Petitioner
Through: Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
RAJESH BHUSHAN & ORS. ..... Respondents
Through: Mr.Jaswinder Singh, Adv. for R-1.
Mr.Chetan Sharma, ASG with
Mr.Ripu Daman Bhardwaj, CGSC
and Ms.Aakriti Roy, Adv. for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
22
+ W.P.(C) 1182/2022, CM APPL. 3442/2022 (Direction)
INSHA MINOR THROUGH HER NEXT FRIEND AND
NATURAL FATHER SH IRSHAD AHMAD SOFI ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ORS. ..... Respondents
Through: Mr. Sanjeev Uniyal, Mr. Dhawal
Uniyal, Mr. Sachin Chandela, Advs.
for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
Mr. Rishikesh Kumar, ASC, GNCTD
with Mr.Muhammad Zaid and Ms.
Sheenu Priya, Advs. for R-4.
23
+ W.P.(C) 322/2021, CM APPL. 812/2021(Direction)
KESHAV SHARMA AGE 12 YEARS THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SANJEEV KUMAR
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Chetan Sharma, ASG with
Mr.Ajay Digpaul, CGSC, Mr.Kamal
Digpaul, Ms.Swati Kwatra and
Mr.Anil Gupta, Advs. for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
24
+ W.P.(C) 1491/2021, CM APPL. 4291/2021(Direction)
CM APPL. 8671/2022(Direction)
MASTER MEDHANSH JHAWAR @ MADHAV..... Petitioner
Through: Mr. Rahul Malhotra, Mr. Manas
Tripathi and Mr. Anshul Gupta, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
25
+ W.P.(C) 1511/2021, CM APPL. 4331/2021(Direction)
CM APPL. 8616/2022(Direction)
MASTER KENIT JHAWAR @ KESHAV ..... Petitioner
Through: Mr. Rahul Malhotra, Mr. Manas
Tripathi and Mr. Anshul Gupta, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Ghanshyam Mishra, Ms.Sunaina
Mishra, Mr.Rishav Dubeyand
Mr.Sameer Sharma, Advs. for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
26
+ W.P.(C) 1611/2021, CM APPL. 4600/2021(Direction)
LAKSHYA KUMAR GOYAL, 8 YRS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SH. VIPIN KUMAR
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Poddar Adv.
Mrs.Bharathi Raju, Sr. Panel Counsel
for R-1.
Mr.Tanveer Oberoi, Adv. for AIIMS.
27
+ W.P.(C) 5315/2020, CM APPL. 19189/2020(Direction)
MASTER ARNESH SHAW ..... Petitioner
Through: Mr. Rahul Malhotra, Mr. Manas
Tripathi and Mr. Anshul Gupta, Advs.
Mr.Asif Ahmed, Adv.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Chetan Sharma, ASG with
Mr.Ripu Daman Bhardwaj, CGSC
for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
28
+ W.P.(C) 3662/2021, CM APPL. 11103/2021, CM APPL.
25590/2021(Direction), CM APPL. 32504/2021
PAYEL BHATTACHARYA ..... Petitioner
Through: Mr.Shivam, Mr.Aditya Chatterjee,
Mr.Abhishek Singh, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ORS. ..... Respondent
Through: Mr.Chetan Sharma, ASG with
Mr.Ripu Daman Bhardwaj, CGSC
for UOI.
Mr. Anuj Agarwal, ASC with
Ms.Ayushi Bansal, Adv. for R-2
Mr.Tanveer Oberoi, Adv. for AIIMS.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
29
+ W.P.(C) 3682/2021, CM APPL. 11153/2021(Direction)
HARSHIT SONI, 16 YEARS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SH. TIKAM CHAND SONI
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Chetan Sharma, ASG with Mr. T.
P. Singh, Sr. central govt. counsel for
UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
30
+ W.P.(C) 3689/2021, CM APPL. 11179/2021(Direction)
DHANANJAY BHARDWAJ, 11 YEARS OLD, THROUGH HIS
NEXT FRIEND AND NATURAL FATHER SH. AMIT KUMAR
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Sanjeev Uniyal, Mr.Dhawal
Uniyal, and Mr.Sachin Chandela,
Advs. for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
31
+ W.P.(C) 3706/2021, CM APPL. 11229/2021(Direction)
KHUSHWANT BHARDWAJ, 7 YEARS OLD, THROUGH HIS
NEXT FRIEND AND NATURAL FATHER SH. NIKHIL
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
BHARDWAJ ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
32
+ W.P.(C) 3707/2021, CM APPL. 11230/2021(Direction)
AARAV GARG, 5 YEARS OLD, THROUGH HIS NEXT FRIEND
AND NATURAL FATHER SH. VIVEK ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr. Sidharth Khatana, Adv. for R-1.
Mr.Tanveer Oberoi, Adv. for AIIMS.
33
+ W.P.(C) 3729/2021, CM APPL. 11269/2021(Direction)
MANISH, 8 YEARS OLD, THROUGH HIS NEXT FRIEND AND
NATURAL FATHER SH. PHOOL CHAND JAT & ANR.
..... Petitioners
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
34
+ W.P.(C) 3737/2021, CM APPL. 11277/2021(Direction)
SHOURYA MARU, 7 YEARS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SH. KAMAL KUMAR
MARU ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Ranvir Singh, CGSC for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
35
+ W.P.(C) 3859/2021, CM APPL. 11647/2021(Direction)
SIDDHARTH SWARNKAR, 9 YEARS OLD, THROUGH HIS
NEXT FRIEND AND NATURAL FATHER SH. DINESH KUMAR
SWARNKAR ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
36
+ W.P.(C) 4045/2021, CM APPL. 12213/2021(Direction)
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 and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Harish Kumar Garg, Adv. for R-1.
Mr.Tanveer Oberoi, Adv. for AIIMS.
37
+ W.P.(C) 4067/2021, CM APPL. 12306/2021(Direction)
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, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Sanjeev Sabharwal, Sr. govt.
counsel for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
38
+ W.P.(C) 4259/2021, CM APPL. 12948/2021(Direction)
ISHAAN, 10 YEARS OLD, THROUGH HIS NEXT FRIEND AND
NATURAL FATHER SH. RAJVIR SINGH ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
39
+ W.P.(C) 4304/2021, CM APPL. 13108/2021(Direction)
TANAV HANDOO, 6 YEARS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SH. AMIT HANDOO
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Satya Ranjan Swain, Sr. Panel
Counsel with Mr.Kautilya Birat, Adv.
for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
40
+ W.P.(C) 4551/2021, CM APPL. 13949/2021(Direction)
SHAURYA DAHIYA, 7 YEARS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL FATHER SH. SATBIR DAHIYA
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Avnish Singh, Sr. central govt.
counsel for UOI with Mr.Syed Mohd.
Muztaba, Adv.
Mr.Tanveer Oberoi, Adv. for AIIMS.
41
+ W.P.(C) 4812/2021, CM APPL. 14844/2021(Direction)
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 and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Ranvir Singh, CGSC for UOI.
Mr.Tanveer Oberoi, Adv. for AIIMS.
42
+ W.P.(C) 5394/2021, CM APPL. 16683/2021(Direction)
UDAYVEER SINGH GULERIA, 7 YEARS OLD, THROUGH HIS
NEXT FRIEND AND NATURAL FATHER SH. RAMESH
GULERIA ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
43
+ W.P.(C) 5395/2021, CM APPL. 16686/2021(Direction)
MASTER AYUSHMAN CHATURVEDI ..... Petitioner
Through: Mr.Anurag Ojha and Mr.Bibhuti
BHushan Mishra, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ORS. ..... Respondent
Through: Mr.Niraj Kumar, Sr. Central Govt.
Counsel for R-1/UOI.
Mr. Farman Ali, Sr. Panel counsel
and Ms.Usha Jamnal, Adv. for R-1.
Ms.Moksha Sharma, Ms.Varsha
Sharma, Advs. for Mr.Jawahar Raja,
ASC (C) for R-2.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Mr.Tanveer Oberoi, Adv. for AIIMS.
44
+ 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 and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ORS. ..... Respondent
Through: Mr.Chetan Sharma, ASG with
Mr.Ripu Daman Bhardwaj, CGSC
with Mr.Kushagra Kumar, Adv. for
UOI.
Mr.Divyam Nandrajog, Panel counsel
for GNCTD with Mr.Jasmeet Jolly,
Adv. for R-2.
Mr. Tanveer Oberoi, Adv. for AIIMS
45
+ W.P.(C) 14317/2021, CM APPL. 45148/2021(Direction)
SHREYANSH AARAV, 11 YEARS OLD, THROUGH HIS NEXT
FRIEND AND NATURAL MOTHER SMT. KANCHAN KAMINI
..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondents
Through: Mr.Chetan Sharma, ASG with
Mr.Ripu Daman Bhardwaj, CGSC for
UOI.
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
Mr.Tanveer Oberoi, Adv. for AIIMS.
46
+ W.P.(C) 2943/2020, CM APPL. 6633/2022(Direction)
ALISHBA KHAN ..... Petitioner
Through: Mr. Rahul Malhotra, Mr. Manas
Tripathi and Mr. Anshul Gupta, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA AND ORS. ..... Respondent
Through: Mr.Anuj Agarwal, ASC with
Ms.Ayushi Bansal, Adv. for R-2 & R-
4.
Mr.Tanveer Oberoi, Adv. for AIIMS.
47
+ W.P.(C) 10782/2020, CM APPL. 33828/2020(Direction)
AVIRAJ GARG, AGE 4 YEARS, THROUGH HIS NEXT FRIEND
AND NATURAL FATHER SH. ABHINAV GARG..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
UNION OF INDIA & ANR. ..... Respondent
Through: Mr.Tanveer Oberoi, Adv. for AIIMS.
48
+ W.P.(C) 11610/2017, CM APPL. 27637/2018 (Direction)
FSMA INDIA CHARITABLE TRUST ..... Petitioner
Through: Mr.Ashok Agarwal, Mr.Kumar
Utkarsh and Mr.Manoj Kumar, Advs.
Ms. Shyel Trehan, Amicus Curie [M.
No. 09810163818] with Mr. Rohan
Poddar Adv.
versus
Signature Not Verified
Digitally Signed
By:NEHA
Signing Date:06.08.2022
14:19:42
UNION OF INDIA AND ANR. ..... Respondent
Through: Mr.Chetan Sharma, ASG with
Mr.Vijay Joshi, Sr. panel counsel,
Mr.Gurjas Sigh Narula, Adv. for R-1.
Mr.Sameer Vashisht, ASC (civil)
GNCTD with Ms.Sanjana Nangia,
Adv.
Mr.Tanveer Oberoi, Adv. for AIIMS.
CORAM:
HON'BLE MR. JUSTICE YASHWANT VARMA
ORDER
% 05.08.2022
1. The Court is firstly apprised that the Special Leave Petition which was taken against the order of 14 December 2021 came to be disposed of on 11 July 2022 with the Supreme Court observing that it found no reason to entertain the challenge and that liberty stood reserved to the Union to advance submissions before this Court in the pending batch. That order has also noticed the last order passed by the Court on 01 June 2022.
2. The Court notes that in its last order it had requested the learned Amicus Curiae to contact Dr. Apurba Ghosh and Dr. Arun Shastry, two eminent doctors, who were carrying on research in the field of rare diseases to attend these proceedings. Pursuant to that request, Dr. Shastry has graciously appeared. Dr. Ghosh could not attend these proceedings on account of personal difficulties.
3. The Court is informed that M/s Dystrophy Annihilation Research Trust has developed a drug for the treatment of Duchenne Muscular Dystrophy [DMD]. It had sought and has been granted the requisite statutory permission to undertake clinical trials of that drug. The aforesaid permission has been granted by the Director General of Health Services in Signature Not Verified Digitally Signed By:NEHA Signing Date:06.08.2022 14:19:42 terms of its communication of 25 August 2020. The Court is informed that the first stage trial has been completed and that the drug in question has shown encouraging results in an individual patient who was administered the same over a period of 26 weeks. The aforesaid initiative has also met with the approval of the competent authorities for the second and third phase clinical trials and 9 sites have also been duly identified. 54 children are stated to have been enrolled for the purposes of those trials. The issue which however appears to arise is the funding of expenses which would be incurred in these clinical trials in which 54 children with rare diseases already stand enrolled. The learned Amicus Curiae apprises the Court that the treatment would entail an outlay of at least Rs. 20 lakhs in the manufacture of doses for each enrolled child.
4. It would be pertinent to note that in the order of 01 June 2022, the Court had taken note of the Office Memorandum of 19 May 2022 which had enhanced the earlier limit of financial support and increased it from Rs.20 lakhs to Rs.50 lakhs. The said Office Memorandum envisages the extension of financial support up to Rs.50 lakhs for treatment of patients suffering from any of the rare diseases catalogued in the National Policy for Rare Diseases, 2021. The permission which has been accorded for the clinical trial of the experimental drug is in respect of DMD which has been duly recognized as one of the rare diseases in the National Policy.
5. The Court is of the considered view that the financial support which is envisaged in the Office Memorandum of 19 May 2022 and its terms which speak of financial aid "for treatment" could be considered as covering the expenses likely to be incurred in the course of administration of the trial Signature Not Verified Digitally Signed By:NEHA Signing Date:06.08.2022 14:19:42 drug by the competent authority in the Union Government. The imperatives for favorable consideration and exploration of this line would be guided by the stark difference in the price of the trial drug when compared to that of other experimental remedies currently available as well as the possibility of the drug which has been indigenously developed then being adopted for treatment of many more DMD afflicted children in our country and across the globe. Apart from the evident benefits of cost saving, the trials may perhaps lead to the rollout of a readily accessible drug for DMD in the country itself.
6. While the Court is conscious that the drug is to presently go through a rigorous clinical trial in order to gauge and ascertain its efficacy, it also bears in mind and weighs in consideration the opinion of AIIMS which had informed the Court that the drugs currently being adopted for treatment "may help in attenuating the decline in cardiac and respiratory functions". That expert body had further submitted before the Court that presently there is a dearth of evidence which may suggest or establish that the administration of those drugs would help in stopping the progress of the degenerative disorder. Admittedly, even for those exorbitantly priced drugs there are no long-term clinical studies available and they thus all so remain in the realm of experimental therapies. All of the aforesaid factors would thus merit consideration of the competent authority in the Union Government which may examine whether the expenses which are likely to be incurred in the course of administering the drug to the 54 enrolled patients would stand covered under Office Memorandum of 19 May 2022.
7. The aforesaid would in any case be in addition to the Rare Diseases Cell in the Department of Health and Family Welfare in the Union Signature Not Verified Digitally Signed By:NEHA Signing Date:06.08.2022 14:19:42 Government duly attending to the indents which have been forwarded by AIIMS on 01 August 2022 in respect of children who are not enrolled in the clinical trials and are to undergo treatment in terms of alternatives presently available at the various Centers of Excellence.
8. Mr. Chetan Sharma, learned ASG, is thus requested to obtain instructions with respect to the issues flagged above and more particularly with regard to the Office Memorandum of 19 May 2022 being applied to meet the expenses likely to be incurred in the second and third phase of clinical trials of the experimental drug and the treatment of children enrolled in those trials.
9. List again on 09.09.2022, at 2:15 P.M. YASHWANT VARMA, J.
AUGUST 5, 2022 bh Signature Not Verified Digitally Signed By:NEHA Signing Date:06.08.2022 14:19:42