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IN THE HIGH COURT OF JHARKHAND AT RANCHI
RAJESH SHANKAR, J.
Saurabh Kumar Singh S/o Sri Nagendra Singh – Appellant
Versus
The State of Jharkhand through Chief Secretary, Government of Jharkhand – Respondent
Civil Review No.16 of 2019
Decided on : 07-03-2025
(A) National Policy for Rare Diseases, 2021 - Office Memorandum dated 19th May, 2022 - Financial assistance for patients suffering from rare diseases - The financial support has been enhanced from INR 20 lakhs to INR 50 lakhs, applicable to patients in any of the Centres of Excellence (CoEs) for treatment - The review petition by the Union of India became infructuous as financial assistance is now to be extended to the petitioner’s son. (Paras 2, 4)
(B) Contempt of Court - The contempt proceeding against the Opposite Parties is dropped due to the Union of India's compliance with the financial assistance provisions. (Para 4)
Facts of the case:
The Union of India submitted a supplementary affidavit indicating the enhancement of financial assistance for rare diseases, which benefits the petitioner’s son suffering from MPS II (Hunter Syndrome). The review petition was deemed unnecessary as assistance is now available.
Findings of Court:
The court found no need to continue with the contempt matter as the necessary financial assistance will be provided.
Issues: The main issue addressed was whether the financial assistance under the NPRD, 2021 was applicable to the petitioner’s son.
Ratio Decidendi: The court ruled that the financial support is now available under the modified NPRD, 2021, rendering the review petition infructuous.
Result: The contempt application is disposed of and the review petition is also disposed of as infructuous.
JUDGMENT :
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 Nationa
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