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Judgment
Prathiba M. Singh, J. (Oral)
This hearing has been done through hybrid mode.
The present batch of petitions have been filed by the Petitioners who are children suffering from rare diseases. 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.
Directions in respect of the 14 Petitioners
At the outset, the ld. Counsel Mr. Oberoi on behalf AIIMS, states that there was a miscalculation in the number of vials ordered from M/s. Sarepta Therapeutics. The miscalculation occurred due to a discrepancy in the weight of the Petitioners.
With regard to the 14 Petitioners/children currently undergoing treatment, it appears there were discrepancies in the number of vials ordered. Let these discrepancies be resolved and any additional vials that need to be ordered should also be procured in a timely manner to ensure that the treatment is not interrupted in any way. Let a status report in this regard be filed by AIIMS by the next date of hearing.
In W.P.(C) 4539/2023, the Petitioner is stated to be suffering from DMD. Let the team, including Dr. Kabra from AIIMS, examine this child and file a report by the next date of hearing.
CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024
Vide order dated 27th May, 2024, in respect of CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024, this Court directed as follows:
“2.CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024 have been filed by a minor child - Master Rakshan through his father-Mr. V. Manikandan. It is stated that different authorities, including the Director, Institute of Child Health, are in contempt of orders passed by this Court dated 23rd March, 2021 and 15th May, 2023.
3.In the contempt petitions, the father of the minor child appeared virtually and made his submissions. According to him, his son is suffering from seizures, which is a form of a rare disease that none of the doctors have been able to diagnose, even in Chennai at the Institute of Child Health, which is stated to be a Centre of Excellence. According to him, the child needs immediate life-saving treatment for an ailment being diagnosed differently by various medical professionals as follows:
(a)Gliosis due to hypoglycaemia in 2015,
(b)Modified Hypsarrhythmia in 2017,
(c)Symptomatic West Syndrome in 2018,
(d)Evolving Lennox Gastaut syndrome in 2021.
(e)Global development delay, etc.
4.According to him, since diagnosis has not been made possible, he believes that the child is suffering from a rare disease and the child is entitled for diagnosis as also for treatment, in terms of various orders passed by this Court from time to time.
5.Heard. In the present case concerning Master Rakshan, admittedly even the diagnosis has also not yet taken place, as a first step before giving any further directions in the matter, it is deemed appropriate to direct the Petitioner to send all medical records to Mr. Oberoi, ld. Counsel for AIIMS on his email address [email protected], with a copy to Dr. Madhulika Kabra at AIIMS, Delhi ([email protected]).
6.Within one week after receipt of all documents and other records from the Petitioner, Dr. Kabra shall inform the Petitioner’s father- Mr. V. Manikandan, of the details of the Centre for Excellence in Chennai where the child can be examined to arrive at a comprehensive diagnosis of the Petitioner’s condition.
7.In the meantime, the Centre for Excellence in Delhi shall also coordinate with the Centre for Excellence situated in Chennai to firstly arrive at a diagnosis for the child. Upon diagnosis, if the child is found to be suffering from one of the rare diseases that is the subject matter of these petitions, recommendations shall be placed before this Court.
8.Additionally, both Centres for Excellence are directed to expedite the diagnosis process and ensure that all necessary tests and evaluations are conducted promptly. Regular updates on the progress of the Petitioner’s diagnosis and any preliminary findings shall be provided before the next date of hearing in the form of a status report.
9.In the meantime, the Centre of Excellence - Institute of Child Health is directed to place on record a complete status report regarding the Petitioner’s case. Let the same be placed on record before the next date of hearing. The present order be communicated by the Registry to Respondent No. 1-Dr. Rema Chandramohan at the email [email protected] for necessary compliance.”
In CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024, following the order dated 27th May 2024, wherein the Court had directed the concerned child to be examined by the Centre of Excellence, Chennai, the said order was challenged by the Petitioners before the ld. Division Bench in LPA No. 541/2024. The ld. Division Bench, vide order dated 4th July, 2024 appointed an Amicus Curiae, who has appeared before this Court today and submits that the said LPA was disposed of yesterday i.e., 11th July, 2024. The said order disposing of the appeal included permission for the Petitioners to approach this Court by way of an application. The sole submission on behalf of the Petitioners in these two contempt petitions is that the child should be examined at AIIMS, Delhi, instead of the Centre of Excellence, Chennai. They are willing to transfer all the records to AIIMS, Delhi. The relevant portion of the said orders read as follows:
4th July, 2024
“1.During the course of hearing, we have repeatedly pointed out to the father of the minor appellant that by filing the present appeal, he would be causing more harm than good to the minor child, who is suffering from an undiagnosed disease.
2.After extensive arguments, the father of the minor appellant prays that an Amicus Curiae be appointed to assist this Court.
3.The appellant’s father assures this Court that he would abide by the advice given by learned Amicus Curiae and would not act contrary to what is suggested by the learned Amicus Curiae. The said undertaking is accepted by this Court and the appellant as well as his father are held bound by the same.
4.Keeping in view the aforesaid, Mr. T. Singhdev, Advocate (Mobile No: 9999012345), who is personally present in Court, is appointed as the learned Amicus Curiae to assist this Court.
5.The Registry is directed to provide a soft copy of the paper book to the learned Amicus by tomorrow.”
11th July, 2024
“1.Learned Amicus Curiae, after speaking to the father of the Appellant, wishes to withdraw the present appeal with liberty to file an application before the learned Single Judge for modification/variation of the impugned order in respect of change of Centre of Excellence to AIIMS, New Delhi along with certain other issues.
2.At the request of the father of the Appellant, learned Amicus Curiae is permitted to represent the appellant before the learned Single Judge. This Court places on record its appreciation for the services rendered by the learned Amicus Curiae.
3.With the aforesaid liberty, the present appeal stands disposed of.”
In view of the submissions made by the ld. Amicus Mr. T. Singh Dev, it is directed that all the medical records of Master Rakshan, through his father-Mr. V. Maniknandan be now transmitted to Mr. Oberoi, ld. Counsel for the AIIMS and Ms. Madhulika Kabra at the email addresses mentioned in paragraph 5 of the previous order dated 27th May, 2024 which are again set out below:
Let the said medical records be transmitted within one week. Dr. Kabra shall then assemble a team to examine the medical records, and if the doctors believe that physical examination of the patient/child is necessary, upon being informed by Dr. Kabra, the child shall travel to AIIMS, Delhi with the father. By the next date of hearing, let a status report be placed on record by AIIMS, Delhi, detailing the manner in which the child’s medical conditions can be addressed.
Ld. Amicus submits that the child is suffering from epileptic attacks. It is directed that since the child is suffering from epilepsy, if the doctors from AIIMS, Delhi wish to meet the child virtually, the same may be organized through video conferencing.
Other directions
Dr. Kabra at AIIMS is requested to compile and file a report on the following aspects by the next date of hearing:
the number of children who have received treatment under the National Rare Diseases Policy at AIIMS, as well as on an all-India basis.
The report should include a breakdown of the types of treatments provided for each of the rare diseases.
By the next date of hearing, let Mr. Tanveer Oberoi, ld. Counsel along with officials from AIIMS shall prepare a flow chart depicting the various steps taken from the initial contact of a child with a rare disease either at the Centre of Excellence in Delhi or other cities, up to the commencement of treatment. The said chart should detail the steps under the policies and include an illustrative example of at least one case to demonstrate the process or the steps followed.
Mr. Chawla, ld. Counsel appearing for the M/s. Sarepta Therapeutics shall file a note by the next date of hearing giving the following details:
The new gene therapy ‘Elevidys’ developed by Sarepta for DMD and whether it is a cure,
the cost thereof, and if there are any clinic trial(s) planned in India or abroad,
The status of the FDA approval, etc.
Ms. Shyel Trehan, ld. Amicus Curiae has concluded her submissions.
By the next date of hearing, the Union of India shall place on record an affidavit detailing the amounts spent and the number of patients who received funding under the National Rare Diseases’ Policy 2021. The said affidavit shall also give details of the types of disorders treated under the said Policy. Mr. Singha shall also remain present on the next date.
List for submissions by Mr. Anand Grover, ld. Sr. counsel on 22nd July, 2024 at 3:30 p.m.