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Judgment
Prathiba M. Singh, J. (Oral)
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.
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.
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:
Gliosis due to hypoglycaemia in 2015,
Modified Hypsarrhythmia in 2017,
Symptomatic West Syndrome in 2018,
Evolving Lennox Gastaut syndrome in 2021.
Global development delay, etc.
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.
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]).
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.
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.
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.
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.
Accordingly, list CONT.CAS(C) 678/2024 and CONT.CAS(C) 687/2024 on 5th July, 2024 for further proceedings.
Logistical challenges qua Petitioners
Vide order dated 10th May, 2024, this Court directed as follows:
“2.Final arguments have commenced in these matters. Ms. Shyel Trehan, ld. Amicus Curiae has commenced her submissions. Today, at the outset, she highlighted certain difficulties faced by the Petitioners, and their guardians in accessing the required medicines for treatment. Some of the challenges include financial support for Petitioners and addressing logistical challenges for patients with rare diseases.
3.It is submitted by the ld. Amicus on behalf of the Petitioner-Master Ayushman Chaturvedi, in W.P.(C) No. 5395/2021, that the State Government of Uttar Pradesh has released a sum of Rs. 5 lakhs to AIIMS for person with disabilities. This amount is stated to have been received by AIIMS. Accordingly, Dr. Madhulika Kabra is requested to examine the Petitioner and procure any necessary aids and equipment, including a motorised wheelchair, and provided to him expeditiously within a period of ten days.
4.In some cases, patients suffering from rare diseases who reside outside of Delhi have expressed through their family members that it is quite inconvenient for them to travel every week to receive infusions. Dr. Kabra has reported that she is coordinating with the Medical Superintendent, AIIMS and other departmental officials to explore whether medications could be dispatched directly to a local hospital or clinic or Centres of Excellence (CoEs) for infusion. Dr. Kabra is authorised to take necessary steps she deems necessary to facilitate this process for these patients. Let a status report be filed in this regard before the next date of hearing.
5.This Court has been apprised that, in terms of the previous orders of this Court dated 26th February,2024 and 22nd March, 2024, M/s. Sarepta Therapeutics has supplied medicines for the 14 patients through AIIMS, New Delhi. However, as per ld. Amicus, the supply would run out by mid- July.”
In W.P.(C) 5315/2020, Mr. Oberoi, ld. Counsel for AIIMS, placed on record the decision of AIIMS, Delhi, regarding the handing over of medicines/drug vials to the parents of patients of DMD residing outside Delhi. As per the decision, it has been decided to permit such patients to receive the vials subject to the following conditions:
“a. The first and the last dose should be administered at AIIMS, New Delhi
b. After the first week's dose, we could provide the rest of the supply in a temperature controlled box to be taken to their nearby facility.
c. The temperature controlled boxes will be arranged by the parents willing for drug administration at a nearby facility. The boxes will be verified by the team at AIMS, New Delhi.
d. Temperature between 2 to 8 degrees Celsius will have to maintained throughout the period of travel/transfer.
e. During visit to AIIMS, New Delhi for administration of the last dose, the parents will have to deposit the empty vials of all the previous doses which were administered at the local nearby healthcare facility.
f. A nodal person who will be the treating doctor at the local nearby healthcare facility will be contacted and the process of infusion administration will be explained in detail by the AIIMS team prior to handing over of the vials.
g. A written protocol for drug infusion will be given to every patient individually.”
In addition, it is submitted that, insofar as the Petitioner in W.P.(C) 5315/2020 is concerned, M/s. Sarepta Therapeutics has agreed to provide the medicines in Kolkata itself, and the expenses for transportation of the same are being borne by the parents of the Petitioner in W.P.(C) 5315/2020.
The Court has perused the conditions imposed by AIIMS, Delhi, and finds them to be reasonable. Accordingly, those parents of children who wish to have the vials administered in their own cities shall, subject to the above conditions, be provided the vials for administration to their children. Let AIIMS place a status report before this Court in respect of the vials administered in the above manner.
Insofar as the Petitioner in W.P.(C) 5395/2021 is concerned, Mr. Oberoi, ld. Counsel for AIIMS, submits under instructions that the Petitioner has a Uniform Disability Identification Number (‘UDIN’). In view thereof, the concerned doctors at AIIMS have already started the process for the procurement of a wheelchair, which should be delivered to the child within a period of 15 days. Ordered accordingly. Let the wheelchair be provided to the petitioner within 15 days.
Final arguments have commenced in these matters. Ms. Shyel Trehan, ld. Amicus Curiae has commenced her submissions.
List for conclusion of oral submissions on 29th May, 2024.