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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.
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.
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.
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.
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.
Vide order dated 22nd March, 2024, it was directed as follows:
“In the meantime, let the next meeting be scheduled between the NRDC and M/s. Sarepta Therapeutics as per the convenience of the committee members and let the same be communicated to the representatives of M/s. Sarepta Therapeutics.”
With regard to M/s. Sarepta Therapeutics, a proposal is stated to have been made by the National Rare Diseases’ Committee yesterday, i.e., 9th May, 2024. Mr. Anish Chawla, ld. Counsel representing M/s. Sarepta Therapeutics, submits that he wishes to seek instructions on providing a written response to the National Rare Diseases’ Committee. However, at this stage, it appears to him that the offer made by the National Rare Diseases’ Committee may not be acceptable.
List on 27th May, 2024 for final hearing.
These are part-heard matters.