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Judgment
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. The Petitioners, who are in their tender years are facing hardships that are both physically daunting and emotionally taxing. The condition of the Petitioners is deepened by the rarity and complexity of their conditions. 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. In the present batch of cases, the Court is not only focused on providing immediate relief to the Petitioners in the form of access to necessary treatments and medications but is also attempting a holistic and comprehensive solution to ensure equitable access to drugs needed for persons with rare diseases.
Communication from M/s. Sarepta Therapeutics
Vide order 5th January, 2024, this Court noted that M/s Sarepta Therapeutics was represented before it. Mr. Saurabh Kirpal, the ld. Senior Counsel, had presented to the Court a communication/submission on behalf of M/s Sarepta Therapeutics, as forwarded by Mr. Charles Gerrits through its counsel, Mr. Anish Chawla. The Court had reviewed the terms contained in the said email and, accordingly, issued the following directions:
The said communication/submission, including the two emails dated 4th January 2024, was to be presented to the National Rare Diseases’ Committee (hereinafter, ‘NRDC’) on 8th January, 2024, coinciding with the next scheduled meeting.
Representatives of M/s Sarepta Therapeutics, along with the ld. Counsel Mr. Anish Chawla, were permitted to attend the meeting either online, in person, or via a hybrid method.
The final report of the NRDC had been submitted to the Court by Mr. Kirtiman Singh, the ld. Counsel, in a sealed envelope. The Court had also reviewed the final report. Considering the aforementioned developments and communication from M/s Sarepta Therapeutics, the NRDC was to proceed with its negotiations with M/s Sarepta Therapeutics and subsequently submit its report concerning DMD as well. Thus, in light of the order aforementioned, the Court deferred its decision on the final report.
Meanwhile, the Court directed that the NRDC should submit to the Court the final negotiated prices for each of the rare diseases they had negotiated with the respective companies, enclosed in a sealed envelope.
Further, in the last hearing the Court noted the following positive development:
“13.In a positive development, M/s. Sarepta Therapeutics has also agreed to provide free treatment for 14 patients for three months. The following are the 14 patients suffering from DMD for whom free treatment shall be provided: ….
14.Accordingly, let Dr. Kabra proceed, place the required order on M/s. Sarepta Therapeutics. Mr. Anish Chawla is directed to provide all necessary assistance to Dr. Kabra and the Petitioners, so as to enable them to receive the required treatment.
15.In terms of the orders dated 7th December, 2023 and 2nd November, 2023, the supplies of the drugs shall, therefore, be made within a period of two weeks by M/s. Sarepta Therapeutics.
16.Let the electronic record of W.P.(C) 5315/2020 titled “Master Arnesh Shaw v. Union of India” be obtained by the counsels appearing for M/s. Sarepta Therapeutics. If they wish to make any submissions on the next date they may do so.
17.The email dated 4th January, 2024 which has been handed over to the Court by M/s. Sarepta Therapeutics’ counsel shall be kept in safe custody of the Court Master. The email dated 4th January, 2024 shall be communicated to the Committee by tomorrow i.e., 6th January, 2024.”
It is submitted on behalf of AIIMS that, in terms of the previous order, AIIMS has placed an order for therapies for 14 children which M/s. Sarepta has assured, would be supplied .
Today, the final report of the NRDC has been received by the Court. The quotation given by M/s. Sarepta Therapeutics to the NRDC has also been placed on record in a sealed cover.
Thus, to facilitate the conclusion of submissions in these writ petitions, let the report of the NRDC, submitted on 5th January 2024, along with the addendum handed over to the Court today, be provided to the ld. Amicus, Ms. Trehan, and Mr. Anand Grover, ld. Sr. Counsel by the Court Master. The said documents shall be handed over so as to enable them to make submissions at the next date of hearing. The said report(s) shall be retained exclusively by these two counsels, and all parties may present their submissions on the next date, referencing the report and the addendum. The said reports shall not be shared by the said counsels with anyone else.
Ld. Counsels for the Petitioners, ld. Amicus and the counsels for all the companies, as also the Union of India may make their submissions on the next date of hearing.
For the purpose of carrying out the final hearing in these petitions in a smooth manner, it is directed that all parties shall submit electronic copies of their written submissions, along with the copies of any judgments on the email address of the Court Master. The said submissions should be filed at least two days before the next date of hearing.
In addition AIIMS shall submit a chart regarding the status of treatment of each of the Petitioners before this Court. If any of the parties need the electronic records, they are free to obtain the same.
List on 26th February, 2024 at 2:30 p.m.
W.P.(C) 436/2024 & CM APPL. 2013/2024 W.P.(C) 479/2024 & CM APPL. 2128/2024
These are fresh petitions filed by children who are suffering from rare diseases seeking directions to the Respondents to provide continuous and uninterrupted treatment to them.
Issue notice. Let AIIMS examine the case of these patients and place its report by the next date of hearing.
List on 26th February, 2024 at 2:30 p.m.