IMPORTANT POINT
The court emphasized the right to continuous and uninterrupted treatment for patients suffering from rare diseases under the National Rare Diseases Policy, 2021.

JUDGMENT

Prathiba M. Singh J. (Oral)

1. This hearing has been done through hybrid mode.

2. At the outset, it is pointed out by ld. Counsels that W.P.(C) 1012/2023 titled Ratnesh Kumar Jigyasu v. Union of India has been filed before the Supreme Court under Article 32 of the Constitution of India, 1950. It is submitted that the said petition has been filed on behalf of 251 persons, a majority of whom are minors suffering from muscular dystrophy, seeking formulation of a national plan for treatment. The said petition was listed before the Hon'ble Supreme Court on 6th October, 2023 wherein the following order has been passed:

"1 Mr. Utsav Bains, counsel appearing on behalf of the petitioner submits that the jurisdiction under Article 32 of the Constitution has been invoked on behalf of 251 persons, a majority of whom are minors, suffering from Muscular Dystrophy.

2 Counsel submits that Muscular Dystrophy is broadly categorized into three groups Group 1, Group II and Group III. Financial assistance is made available for the treatment of patients falling in Group I since the treatment is stated to be a one-time treatment. However, it has been submitted that such treatment is not necessarily available to those in Group II and Group III. Hence, a national plan is sought for dealing with such patients.

3 Issue notice, returnable in four weeks.

4 Liberty to serve the Central Agency. Dasti, in addition, is permitted.

5 We request Ms Aishwarya Bhati, Additional Solicitor General to assist this Court on the issues raised."

3. Ld. counsels submit that this petition is now listed on 6th November, 2023 tentatively as per the Supreme Court's website.

4. This Court on 3rd August, 2023 had passed the following order:

12. One of the major issues that have been repeatedly highlighted to this Court is the non-continuation of medication to DMD patients who are 14 in number due to exhaustion of funds provided under the National Rare Diseases Policy, 2021. These patients have already received treatment till about March-April this year under the Policy. The concern of these patients and their parents is that if further doses are not administered, it would have an adverse impact on their health.

13. In the next meeting of the NRDC, a specific position shall be taken on how to proceed with these 14 DMD patients who have already received medical doses.

5. On the last date, a status report was placed on record by the National Rare Diseases' Committee (NRDC) to the effect that the Chairman had made an appeal to the companies in respect of the 14 patients to ensure continuous treatment. However, today the Court has been informed that the treatment has not started till date. Upon a few queries put by the Court, it appears that the assurance stated to have been given by the companies is not clear.

6. The NRDC shall obtain specific assurance from the companies and upon obtaining the same, direct Dr. Madhulika Kabra and her team to proceed with the treatment of these 14 patients. The issue shall be considered by the NRDC on 17th October, 2023, which is the next meeting of the Committee.

7. Insofar as other issues such as negotiation of prices for procurement of medicines for rare diseases are concerned, the Court has been informed that the final meeting of the Committee is scheduled on 17th October, 2023 for negotiations with the companies and the report of the Committee is likely to be finalised by 31st October, 2023.

8. On behalf of Roche, it is submitted by Mr. Pravin Anand, ld. Counsel that the proposal from Roche has already been submitted in a sealed envelope to the NRDC.

9. It has been pointed out by Mr. Rahul Malhotra, ld. Counsel, that insofar as the Petitioner in W.P.(C) 1491/2021 i.e., Medhansh Jhawar and W.P.(C) 1511/2021 i.e., Kenith Jhawar is concerned, despite specific orders of the Court on 1st September, 2023 that their treatment shall be continued till the next date, their treatment has been stopped by AIIMS. It is submitted that the next dose which was to be r