Mohd. Kalim v. Employees State Insurance Corporaton & ORS.

Applt.Side-1 to 16 $~ * IN THE HIGH COURT OF DELHI AT NEW DELHI 1.

W.P.(C) 8445/2014 MOHD. KALIM ..... Petitioner CORPORATON & ORS.

with Mr. Anuj Aggarwal, ASC with Mr. Chirayu Jain, Ms. Nikita Goyal, Mr. Rao Abdul Ahmad Khan, Advocate for GNCTD.

Mr. Lokesh Sukhwani, Advocate with Mr. Kapil Kumar, Advocate for MoHFW, UOI.

Ms. Shiva Lakshmi, CGSC for UOI with Ms. Preeti Sudan, Secretary (Health) and Mr. Manoj Jhalani, Addl Sec. (Health) in person.

Advocates for AIIMS with Dr. Kanika Jain, AIIMS.

Mr. Siddharth Panda with Mr. Ashish Pradhan, Advocates for ILBS.

WITH 2.

W.P.(C) 6865/2015 DHARMENDER SINGH & ANR CORPORATION & ORS Mr. Abhay Prakash Sahay, CGSC with Mr. Suraj Kumar, Advocates for UOI.

with Mr. Anuj Aggarwal, ASC with Mr. Chirayu Jain, Ms. Nikita Goyal, Mr. Rao Abdul Ahad Khan, Advocate for GNCTD.

3.

W.P.(C) 1493/2016 & CM APPL. 6500/2016 BABY NISAGRA AND ANR CORPORATION AND ORS

Ms. Shiva Lakshmi, CGSC with Mr. Ruchir R. Rai and Mr. Siddharth Singh, Advocates and Mr. Manohar Agnani, Joint Secretary, MoH&FW.

with Mr. Anuj Aggarwal, ASC with Mr. Chirayu Jain, Ms. Nikita Goyal, Mr. Rao Abdul Ahad Khan, Advocate for GNCTD.

4.

W.P.(C) 1860/2016 & CM APPLs. 7986/2016, 40865-40866/2016 MASTER LALIT KUMAR AND ANR CORPORATION AND ORS

Ms. Shiva Lakshmi, CGSC with Mr.

Ruchir R. Rai and Mr. Siddharth Singh, Advocates and Mr. Manohar Agnani, Joint Secretary, MoH&FW.

with Mr. Anuj Aggarwal, ASC with Mr. Chirayu Jain, Ms. Nikita Goyal, Mr. Rao Abdul Ahad Khan, Advocate for GNCTD.

Mr. Manjit Singh of LSDSS.

Ms. Gitanjali Sehgal, FSMA.

5.

W.P.(C) 2609/2016 & CM APPL. 11034/2016 MASTER VISHAL KUMAR (MINOR) AND ANR

CORPORATION AND ORS (Inspection) and Mr. Dhruv Prasad Mr. Vivek Goyal, CGSC with Mr. Santosh Kumar Pndey, Advocates for UOI/R-2 and 3.

with Mr. Anuj Aggarwal, ASC with Mr. Chirayu Jain, Ms. Nikita Goyal, Mr. Rao Abdul Ahad Khan, Advocate for GNCTD.

Oberoi, Mr. Nipun Gautam and Mr.

Nikhil Mehra, Advocates for AIIMS.

6.

W.P.(C) 2945/2016 ANIL KUMAR ..... Petitioner

CORPORATION & ORS (Inspection) and Mr. Dhruv Prasad Mr. Mohit Bhardwaj, Advocate with Ms. Sabhya Jain, Advocate for UOI/R-2 and 3.

Mr. Ramesh Singh with Mr. S.K.

Tripathi, ASC, Mr. Chirayu Jain and Ms. Nikita Goyal, Mr. Rishabh Ostwal and Mr. Shashank Tiwari, Advocates for GNCTD.

Mr. Atul Kumar, Advocate with Ms.

Sweety Singh, Advocate for AIIMS.

7.

W.P.(C) 4444/2016 KUMARI PRIYA AND ANR CORPORATION & ORS Shukla, Advocates.Mr. Yakesh Anand with Mr. Nimit Mathur and Ms. Sashya Gulati, Advocates for ESIC.

with Mr. Chirayu Jain, Advocate for GNCTD.

Mr.Sanjeev Uniyal with Mr.Dhawal Uniyal, Advocates for UOI.

Oberoi, Mr. Nipun Gautam, Mr.

Anand Varma and Mr. Shwetank Singh, Advocates for AIIMS.

8.

W.P.(C) 8474/2017 SANGEETHA AND ANR CORPORATION AND ORS (Inspection) and Mr. Dhruv Prasad Mr. B.S. Shukla, CGSC with Mr. Shravan Kumar and Mr. Sumit Rajput, Advocate for UOI.

with Mr. Chirayu Jain, Advocate for GNCTD.

9.

W.P.(C) 8503/2017 BABY DEVANANDHA D (MINOR) THR HER MOTHER DEEPA S AND ANR CORPORATION AND ORS Shukla, Advocates.Mr. Yakesh Anand with Mr. Nimit Mathur and Ms. Sashya Gulati, Advocates for ESIC.

Mr. B.S. Shukla, CGSC with Mr. Shravan Kumar and Mr. Sumit Rajput, Advocate for UOI.

with Mr. Chirayu Jain, Advocate for GNCTD.

10.

W.P.(C) 7730/2016 & CM APPL. 31910/2016 MASTER RUDRANSH VYAS (MINOR) & ANR.

CORPORATION & ORS.

Shukla, Advocates.Mr. Yakesh Anand with Mr. Nimit Mathur and Ms. Sashya Gulati, Advocates for ESIC.

Mr. Dev P. Bhardwaj, CGSC with Ms. Anubha Bhardwaj, Advocate for UOI.

with Mr. Chirayu Jain, Advocate for GNCTD.

11.

W.P.(C) 10554/2016 N. PAVAN & ANR CORPORATION & ORS Mr. Sarfaraz Ahmad, Advocate for UOI.

with Mr. Chirayu Jain, Advocate for GNCTD.

12.

W.P.(C) 11866/2016 MASTER DIXIT ANALAGI AND ANR COROPORATION AND ORS Ms. Shiva Lakshmi, Advocate for UOI with Ms. Preeti Sudan, Secretary (Health) and Mr. Manoj Jhalani, Addl Sec. (Health) in person.

with Mr. Chirayu Jain, Advocate for GNCTD.

13.

W.P.(C) 1935/2017 & CM APPL. 8589/2017 SHIV KUMAR JHA ..... Petitioner Mr. Naresh Sharma with Mr. Yogesh Tiwari, Advocates UNION OF INDIA AND ANR Mr. Dev P. Bhardwaj, CGSC with Ms. Anubha Bhardwaj, Advocate for UOI.

with Mr. Chirayu Jain, Advocate for GNCTD.

14.

W.P.(C) 11610/2017 & CM APPL. 27637/2018 FSMA INDIA CHARITABLE TRUST ..... Petitioner UNION OF INDIA AND ANR.

Mr. Vijay Joshi, Sr. Panel Counsel for R-1/UOI.

Mr. Ramesh Singh with Mr. Devesh Singh, ASC with Ms. Sukriti Ghai and Ms. Urvashi Tripathi, Advocates for GNCTD.

Mr. Rajshekhar Rao with Mr. Kotla Harshvardhan and Ms. Mansi Sood, Advocates for Sanofi Genzyme.

(Inspection) and Mr. Dhruv Prasad

15.

W.P.(C) 699/2018 MASTER HARSHA D.S. (MINOR) THROUGH HIS FATHER SHANKARAPPA D.S.

AND ANR.

EMPLOYESS STATE INSURANCE CORPORATION AND ORS.

Ms. Amrita Prakash, CGSC with Mr. Hari Shankar Sharma, Advocate for UOI/R-2&3.

with Mr. Chirayu Jain, Advocate for GNCTD.

16.

W.P.(C) 1266/2018 & CM APPL. 5278/2018 SH. MOHD. RAFIQ TANTRY ..... Petitioner ALL INDIA INSTITUTE OF MEDICAL SCIENCES ADN ORS Oberoi, Mr. Nipun Gautam, Mr. V.S.R. Krishna and Mr. V.

Shashank Kumar, Advocates for AIIMS.

Ms. Monika Arora, with Mr. Kushal Kumar and Mr. Praveen Singh, Advocates for UOI/R-2.

with Mr. Chirayu Jain, Advocate for GNCTD.

CORAM:

HON'BLE MR. JUSTICE MANMOHAN

O R D E R

% 08.02.2019 Mr. Ashok Aggarwal, learned counsel for the petitioners states that he has filed a writ petition in Supreme Court seeking implementation of National Policy for Treatment of Rare Diseases. Accordingly, this Court was not inclined to proceed ahead with the case. But Mr. Ashok Aggarwal insists that this Court proceed with present batch of matters. He clarifies that no relief with regard to patients in Delhi has been sought in the said case. In pursuance to the order dated 17th December, 2018, Ms. Preeti Sudan, Secretary Department of Health and Family Welfare, Government of India, is personally present.

She states that subsequent to the last date of hearing, the Ministry of Health and Family Welfare has issued a nonstatutory Gazette Notification dated 18th December, 2018 informing the general public that the National Policy for Treatment of Rare Diseases, 2017 has been kept in abeyance till the revised Policy is issued or till further orders, whichever is earlier. Since there is no challenge to the notification till date, the issue of 'somersault' by the officials of the Ministry of Health and Family Welfare, Govt. of India, is irrelevant for the present proceedings. However, Ms. Preeti Sudan assures this Court that she would convene a meeting of all stakeholders who are appearing in the present proceedings including learned counsel for the parties, i.e., Mr. Manjit Singh of LSDSS and Ms.

Gitanjali Sehgal, FSMA as well as the Amicus Curiae and an authorised representative of ESIC, AIIMS, SANOFI within two weeks to discuss the way forward.

She further states that she will endeavour to notify the new policy for treatment of rare diseases within nine months. She assures this Court that

while drafting the new National Policy for Treatment of Rare Diseases, not only the National Policy for Treatment of Rare Diseases, 2017 but also the judgment of this Court in Mohd. Ahmed (Minor) vs. Union of India, 2014 SCC OnLine Del 1508 as well as the United States' Orphan Drug Act 1983, the European Union Regulations 1999, Acts and Policies prevalent in Japan, Australia and Israel shall be taken into account. Learned counsel for petitioners are directed to respond to the affidavit filed yesterday by the Secretary, Department of Health and Family Welfare, Government of India within three weeks. It is pertinent to mention that it is for the first time in this affidavit it has been stated that the prognosis of Master Ubed and Baby Arshi is not good.

Learned counsel for AIIMS states that in pursuance to this Court's previous orders, the hospital in anticipation had purchased ERT vials but the Health Ministry has neither paid for it nor is giving sanction to administer the same.

Learned counsel for Union of India states that AIIMS had not informed the Ministry of Health about the purchase of vials. Till the next date of hearing, Master Ubed and Baby Arshi are directed to be provided all necessary treatment in the AIIMS in accordance with the advice of the Doctors.

List on 29th March, 2019.

Order dasti under the signature of Court Master. MANMOHAN, J FEBRUARY 08, 2019 js