The Delhi High Court has formed a special committee to oversee and strengthen India’s rare disease crowdfunding platform, aiming to channel CSR funds and public donations to support life-saving treatments for SMA and other rare disease patients.
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NEW DELHI: In a move aimed at improving access to life-saving treatments for patients suffering from rare diseases, the Delhi High Court has constituted a Committee to supervise and oversee the operation of the Crowdfunding platform launched by the Ministry of Health and Family Welfare (MoHFW), Government of India.
The decision came while hearing a writ petition filed by an infant through her parent, diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and life-threatening genetic disorder. The case sheds light on the urgent need for effective implementation of the National Policy for Rare Diseases (NPRD), 2021, and enhanced efforts to mobilize funds for rare disease treatments in India.
Background of the Case
The petitioner, a minor diagnosed with SMA Type 1, sought financial assistance to procure Zolgensma, a one-time gene therapy developed by Swiss pharmaceutical company Novartis. This treatment, which costs approximately ₹17.5 crore per dose, is among the most expensive in the world and is not manufactured or approved in India. It can, however, be imported with proper medical and governmental approval.
Despite recommendation letters from Sir Ganga Ram Hospital and AIIMS, New Delhi, the parents of the petitioner were unable to afford the therapy due to its exorbitant cost. Consequently, the family approached the High Court seeking intervention to facilitate treatment through the Government’s rare disease funding mechanisms.
Court’s Observations
Justice Sachin Datta, while presiding over the matter, observed that the existing crowdfunding platform set up by the Ministry of Health and Family Welfare has not achieved the desired impact. The Court noted that out of 3,981 registered patients, only ₹3,91,589 had been collected so far, an amount it termed “meagre” given the magnitude of the problem.
The Bench emphasized that the challenges faced by individuals with rare diseases must be viewed through a lens of inclusion and compassion, rather than merely as medical or administrative issues. Justice Datta remarked:
“Given the exorbitant cost involved in affording adequate treatment to those afflicted with rare diseases and the resource constraints in allocating budgetary outlays for the same, it is imperative that all efforts be made to ensure that the innovative measure undertaken by the Government of India by setting up of voluntary Crowd Funding Platform, receives the success and results that it deserves.”
The Court directed the formation of a Committee comprising senior officials from the Ministry of Health and Family Welfare, the Ministry of Corporate Affairs, and experts in the field of rare diseases.
The Committee has been tasked with the following key responsibilities:
- Awareness and Outreach:
To spread awareness about the existence and objectives of the Crowdfunding Platform, encouraging potential donors to contribute to treatments for rare diseases. - CSR Fund Mobilization:
To ensure that Corporate Social Responsibility (CSR) funds are channeled into the platform. The Committee shall reach out to Public Sector Undertakings (PSUs) and private corporations to sensitize and encourage them to make voluntary contributions. - Implementation of NPRD 2021:
To coordinate with relevant ministries and authorities for the effective implementation of the National Policy for Rare Diseases, 2021, and to achieve its intended outcomes. - Periodic Meetings and Monitoring:
The Committee shall meet at least once a month and oversee the utilization of funds raised through the platform.
The Bench expressed hope that the Committee would make sincere efforts to ensure that funds raised under its supervision are utilized for the medical treatment of the petitioner, without prejudice to others in similar circumstances.
The Committee has been directed to file a Status Report within 12 weeks, and the matter has been listed for further hearing on December 22, 2025.
Appearance:
Petitioner: Senior Advocate Vikas Singh, Advocates Varun Singh, Bhumi Sharma, Vasudha Singh, Deepika Kalia, Sudeep, and Atif Ahmad
Respondents: ASG N. Venkataraman, SPC Kushagra Kansal, GP Rudra Paliwal, CGSC Ripudaman Bhardwaj, SC Rajiv Kapur, AOR Akshit Kapur, and Advocate Tanveer Oberoi.
Case Title:
Miss Kiara Rawat through Mrs. Lovely Gusain v. Union of India & Ors.
W.P.(C) 16270/2024, CM APPL. 68486/2024, CM APPL. 4866/2025, CM APPL. 17120/2025, CM APPL. 26450/2025
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