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IN THE HIGH COURT OF JHARKHAND AT RANCHI
Mr. Justice Rajesh Shankar, J
Saurabh Kumar Singh, S/o Sri Nagendra Singh - Appellant
Versus
The State Of Jharkhand Through Chief Secretary, Government Of Jharkhand, Project Bhawan - Respondent
Cont. Case (Civil) No.222 of 2018
Decided On : 07-03-2025
(A) National Policy for Rare Diseases, 2021 - Office Memorandum dated 19.05.2022 - Financial assistance for rare diseases - The Government of India enhanced financial support for treatment from INR 20 lakhs to INR 50 lakhs for patients suffering from rare diseases, applicable outside the Rashtriya Arogya Nidhi scheme. (Paras 1-4)
(B) Contempt proceedings - Given the Union of India's compliance with the NPRD, 2021, the contempt matter is dropped as financial assistance is to be provided. (Paras 4-5)
(C) Review petition - The review petition has been rendered infructuous due to the changes in financial assistance procedures. (Paras 3-6)
Facts of the case:
The Union of India submitted a supplementary affidavit indicating enhanced financial assistance for rare diseases, referencing an earlier judgment that mandated additional support beyond the NPRD cap.
Findings of Court:
The court found no need to proceed with contempt proceedings as financial assistance would now be provided per the updated policy.
Issues: The main issues pertained to the financial assistance under the NPRD and the implications of the recent Office Memorandum.
Ratio Decidendi: The court concluded that the financial assistance for the petitioner's son would be granted under the modified NPRD, eliminating the need for contempt proceedings.
Result: Contempt application disposed of; review petition disposed of as infructuous.
ORDER :
RAJESH SHANKAR, J.
1. Mr. Anil Kumar, learned Additional Solicitor General of India refers to the supplementary affidavit filed on behalf of the review-petitioner (the Union of India) dated 21st February, 2025, the relevant paragraphs of which read as under :
“5.That it is stated that the Government of India, Ministry of Health and Family Welfare vide its letter dated 11.08.2022 has issued guidelines and procedures for giving financial assistance to the patients suffering from various rare diseases which has also been approved by competent authority. The same is brought on record by way of present supplementary affidavit. Photocopy of letter dated 11.08.2022 is annexed herewith and marked as Annexure-ASA-1 to the present affidavit.
6.That the same is in consonance with the National Policy for Rare Diseases (NPRD), 2021 wherein review of the National Policy for treatment of Rare Disease, 2017 was made and procedures have been laid down for implementation of the strategy for fighting rare diseases. When the policy in 2021 was initially formulated, a benefit of INR 20 lakhs was extended to individuals in Group 1 diseases. However, an amendment was carried out on 19.05.2022 which extended the treatment cost to INR 50 lakhs over their life time and to individuals who fall under any of the three groups of Rare Diseases conceived under NPRD, 2021. The benefit under the NPRD, 2021 could be claimed outside the umbrella of Rashtriya Arogya Nidhi where the funds are allotted to various Centres of Excellence (CoEs) from the Ministry of Health and Family Welfare, which will thereafter administer the allotted amounts, within the cap placed under the NPRD, 2021. Photocopy of National Policy for Rare Diseases, 2021 and Notification dated 19.05.2022 are annexed herewith and marked as Annexure-ASA-2 and ASA-3 to the present affidavit.
7.That it is further stated that in similar case (WP(C)/5315/2020) titled as Master Arnesh Shaw & Ors Vs UOl, the Hon’ble High Court of Delhi, vide Judgement dated 04.10.2024, had passed various directions for Union of India, National Rare Diseases’ Committee (NRDC) and pharmaceutical companies including directions to provide free and continuous treatment with financial support beyond the ceiling of Rs. 50 Lakh as prescribed under NPRD, 2021. The directions passed vide Judgement dated 04.10.2024 were examined in the Department. Since the directions passed by the Hon’ble High Court of Delhi were not in consonance with the provisions of the National Policy for Rare Diseases (NPRD), 2021, and thus appeared non-implementable, MoHFW has filed an appeal in the form of a Special Leave Petition (SLP) No. 28777/2024 in the Hon’ble Supreme Court against the Judgement dated 04.10.2024 of the Hon’ble High Court of Delhi. Hon’ble Apex Court vide order dated 9.12.2024 has stayed the operation of the impugned judgment. The Hon’ble Supreme Court heard the matter оп 09.12.2024 and inter alia passed the following directions:
"In the meanwhile, the petitioner, Union of India, will comply with the terms and conditions of the
2 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, complying with the aforesaid notification and also issuing directions for payment on a case to case basis, whenever it is required."
Photocopy of Order dated 4.10.2024 passed by Hon’ble Delhi High Court and order dated 9.12.2024 passed by Hon’ble Apex Court are annexed herewith and marked as Annexure- ASA-4 and ASA-5 to the present affidavit.”
2. It is, thus, submitted by the learned A.S.G.I. that as per Office Memorandum dated 19th May, 2022 issued by the Government of India, Ministry of Health & Family Welfare (Rare Diseases Cell), the financial support to the patients suffering from any category of the rare diseases as per National
The Government of India enhanced financial assistance for rare diseases to INR 50 lakhs, affecting the existing cases under the National Policy for Rare Diseases.
Financial assistance for rare diseases has been enhanced to INR 50 lakhs, benefiting patients outside the BPL category under the National Policy for Rare Diseases, 2021.
The fundamental right to health and healthcare under Article 21 of the Constitution necessitates ensuring treatment for Rare Diseases despite exorbitant costs, and the government's obligation to fina....
The court affirmed that the right to health, as part of the fundamental right to life under Article 21, requires timely access to treatment, especially for children with rare diseases.
The right to health is an integral part of the right to life under Article 21 of the Constitution, and the Central and State Governments have a duty to protect the life of citizens, especially childr....
The court mandated that the government ensure timely treatment and funding for patients suffering from rare diseases, establishing a comprehensive framework to facilitate compliance with health polic....
The court emphasized the urgency of establishing a national policy for rare diseases, mandating timely action by the government for funding and treatment provisions.
The central legal point established in the judgment is the need to facilitate the conduct of clinical trials, streamline the manufacturing and trials process, and ensure the implementation of the Nat....
Facilities for treatment of rare diseases would not be in place in the State in the near future without judicial interference.
The court emphasized the need for expert examination and policy decision in addressing the grievances related to rare diseases.
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