JUDGMENT
Dated this the 6thday of February 2025
NITIN JAMDAR, C.J.
Heard Mr. N. Venkataraman, learned Additional Solicitor General of India and Ms. Maitreyi Sachidananda Hegde, learned counsel appearing for Respondent No.1.
2. The Appellant Union of India had challenged the order passed by the learned Single Judge dated 29 November 2024. The appeal was filed with a delay of 27 days which was condoned and is taken up for consideration.
3. The learned Single Judge has passed the following impugned order:
Learned Central Government Counsel submits that, as against the judgment of the Delhi High Court in WP.C.No.5315 of 2020 and connected matters, the Union of India has preferred a Special Leave Petition and the Diary Number is 55021 of 2024. As per the existing policy of the Central Government for treatment of rare diseases, the maximum amount that can be expended for persons having diseases falling under the schedule is Rs. 50 Lakhs (Rupees fifty lakhs only). It is also submitted that the petitioner's case is under consideration and specific instructions as to the status of her request and the proposed course of action will be
-5-
obtained without delay.
3. Learned counsel for the petitioner submits that the existing stock of medicines will be over by the end of December and unless the process for replenishing supply is initiated now, the petitioner's life will be at peril. It is contended that, inasmuch as Article 21 of the Constitution of India guarantees the life and liberty of citizens, the State is bound to ensure that the petitioner's life is not endangered by reason of its failure to provide requisite medical aid.
4. As per order dated 15.03.2024, this Court had directed the Centre of Excellence to commence the petitioner's treatment immediately, by procuring the required drugs. Hence, a an interim measure, the Centre of Excellence is directed to continue the treatment without break, by procuring the requisite quantity of the drug immediately.
4. The learned ASGI has relied upon the order passed by the Hon'ble Supreme Court in W.P.(C)No.1012/2023 which was filed under Article 22 of the Constitution of India, on behalf of 251 persons who were suffering from rare diseases. The learned ASGI submits that this writ petition has been admitted and notice has been issued, however, there is no interim order. He also submits that the learned Single Judge of Delhi High Court in W.P.(C)No.5315/2020 and others in case of Master Arnesh Shaw v. Union of India and another, after elaborate discussion, has issued several directions including removal of cap of ₹50 lakhs for the treatment of rare diseases declaring
-6-
it to be flexible one. The learned ASGI submits that this decision of the learned Single Judge of Delhi High Court was challenged by the Union of India directly before the Hon'ble Supreme Court by filing a Special Leave Petition (SLP) No.28777/2024. On 9 December 2024, the Hon'ble Supreme Court has passed an order issuing notice and staying operation of the impugned judgment.
5. The order passed by the Hon'ble Supreme Court reads thus:
Our attention is drawn to Annexure P-12 and it is stated that an identical issue is pending before this Court in W.P.(C) No.1012/2023, titled "Ratnesh Kumar Jigyasu & Ors. vs. Union of India & Ors."
The present petition under Article 136 of the Constitution of India has thus been filed before this Court, instead of approaching a Division Bench of the High Court.
Issue notice and tag with W.P.(C) No.1012/2023. Notice will be served by all modes, including dasti. In the meanwhile, the petitioner, Union of India, will comply with the terms and conditions of the notification / Office Memorandum File No.: W- 11037/40/2022-Grants (RD) dated 19.05.2022 issued by the Rare Diseases Cell, Ministry of Health and Family Welfare, Government of India.
There will be stay of operation of the impugned judgment, subject to the petitioner, Union of India,
-7-
complying with the aforesaid notification and also issuing directions for payment on a case to case basis, wherever it is required.
Based on the order of the Hon'ble Supreme Court, the learned ASGI contends that the order passed by the learned Single Judge which is prior to the order passed by the Hon'ble Supreme Court on 9 December 2024, needs to be stayed. He also submits that there are thousands of applications of identically situated patients all over the country and if direction such as the one issued in the impugned order is made applicable to all other patients, it will place a substantial financial burden on the Union of India running into almost 32 thousand₹ crores.
6. The learned counsel for Respondent No.1 submits that the order passed by the Hon'ble Supreme Court on 9 December 2024 is distinguishable. According to the learned counsel for the Respondent, it has not precluded the issuance of direction beyond the cap stipulated in the policy.
7. The writ petition is still pending. What is challenged before us is an interim order. Though there is a reference to the filing of SLP, the order passed by the Hon'ble Supreme Court was not before the learned Single Judge while passing the order on 29 November 2024.
-8-
8. Considering the fact that the order of the Hon'ble Supreme Court is a subsequent development and the writ petition is still pending and considering the implications of the interim order, we are of the opinion that it would be appropriate for the learned Single Judge to take up the writ petition for disposal or for an order of continuation/grant or discontinuation/refusal of the interim direction, at the earliest. Considering the position of the cause list before the learned Single Judge, it would require atleast a months' time for the learned Single Judge to take up the matter.
9. In the meanwhile, the question would be of treatment of the Respondent / Petitioner. Learned counsel for the Respondent / Petitioner submits that for one month, the treatment would require around 18 lakhs and the Respondent / Petitioner is not insisting for₹ any gene therapy.
10. That being the position, for a period of one month, the medicines worth 18 lakhs as required by the Respondent / Petitioner₹ be provided by the Union of India. However, taking note of the arguments of learned ASGI, we make it clear that since this order is passed in the above peculiar facts and circumstances, will not amount a binding precedent.
-9-
11. With these observations and with a request to the learned Single Judge to consider the matter as priority, the writ appeal is disposed of.
Sd/-
NITIN JAMDAR
CHIEF JUSTICE
Sd/-
S.MANU
JUDGE
uu
-10-
APPENDIX OF WA 216/2025
PETITIONER ANNEXURES
Annexure -I TRUE COPY OF THE ORDER DATED 09.12.2024 OF THE HON'BLE SUPREME COURT OF INDIA
IN SPECIAL LEAVE PETITION (SLP)
NO.28777/2024.