Delhi High Court Constitutes Committee To Supervise Operation Of Crowd Funding Platform By Ministry Of Health For Rare Diseases

The Delhi High Court has constituted a Committee to supervise or oversee the operation of the Crowd Funding Platform operationalized by the Ministry of Health and Family Welfare, Government of India for rare diseases.

A Writ Petition was filed by an infant through her parent who was diagnosed with Spinal Muscular Atrophy (SMA) Type 1 in July 2024, a rare and life threatening genetically inherited degenerative neuro muscular disease, which progressively weakens the muscles used for movement, swallowing and breathing.

A Single Bench of Justice Sachin Datta observed, “While this Court is not inclined to accept the suggestions made by the learned counsel for the petitioner in toto, this Court is in an agreement that it would be salutary if a committee is set up comprising of senior officials from the Ministry of Health and Family Welfare and the Ministry of Corporate Affairs, Government of India along with expert/s in the field of rare diseases for the effective implementation and furtherance of the aforesaid purpose.”

The Bench said that that the crowd funding platform set up by the Ministry has not met with the desired response and funds garnered thus far, have been quite meagre.

Senior Advocate Vikas Singh appeared for the Petitioner, while ASG N. Venkataraman appeared for the Respondents.

Facts of the Case

The Petitioner-infant was diagnosed with SMA Type 1 and the potential life-saving treatment for the said disease is one-time intravenous infusion (injection) of Zolgensma, a gene therapy developed by a Swiss pharmaceutical company known as Novartis, specifically for children below the age of two with SMA. The said therapy is neither presently approved nor manufactured in India, but can be imported from USA with a doctor’s recommendation and government’s approval.

Unfortunately, despite the Petitioner having a recommendation letter from the Chairperson and Senior Consultant of Sir Ganga Ram Hospital, New Delhi and a letter from AIIMS, Delhi (a Centre of Excellence as per the National Policy for Rare Disease, 2021), recommending for import and administration of Zolgensma, owning to the exorbitant cost of procurement (amongst the most expensive ones in the world, with a single dose costing approximately Rs.17.50 crores), parents of the Petitioner were unable to import the said drug for treatment.

Court’s Observations

The High Court in the above context of the case, noted, “As per the publicly available data, till date, for approximately 3981 patients registered, only a meagre amount of Rs.3,91,589/- has been collected on the said platform. … There can be no cavil with the inference that the Crowd Funding efforts undertaken by setting up of the Crowd Funding platform (https;//rarediseases.mohfw.gov.in/), is required to be supplemented by vigorous efforts to garner funds including by way of channelization of CSR funds into Crowd Funding Platform.”

The Court remarked that the challenges faced by individuals suffering from rare diseases, are required to be seen through a prism of inclusion and humane lens; rather than being merely considered as a medical problem.

“Given the exorbitant cost involved in affording adequate treatment to those afflicted with rare disease and the resource constrains 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”, it emphasised.

Directions and Conclusion

The Court, therefore, constituted a Committee comprising of members and issued the directions as under –

• the Committee shall take adequate steps to spread awareness as regards the existence and objective of aforesaid platform, with the aim to encourage potential donors to make contribution/s for the treatment of individuals suffering from rare diseases;

• an attempt shall be made to ensure that CSR funds are funnelled to the Crowd Funding Platform (https://rarediseases.mohfw.gov.in/). For the said purpose, the committee shall make an endeavour to reach out to Public Sector Undertakings (PSUs) to sensitise them and encourage them to make voluntary contribution/s;

• the Committee shall also take steps to ensure that necessary action is taken in furtherance of and for effectuating the NPRD 2021, and to ensure that the outcomes contemplated thereunder are achieved to the maximum extent. For the aforesaid purpose, the Committee shall liaise with the concerned Ministries/Authorities and;

• the Committee shall meet at least once month in the office of the Chairperson or as may be decided by the Committee.

“Considering the facts and circumstances of the present case, it is hoped and expected that an endeavour shall be made, without causing prejudice to the rights of other similarly situated individuals, to utilize the funds raised under the supervision of the aforesaid Committee through the Crowd Funding Platform towards the medical treatment of the petitioner in the present petition”, it concluded.

Accordingly, the High Court directed the Committee to file a Status Report within 12 weeks and listed the case for further consideration on December 22, 2025.

Cause Title- Kiara Rawat through Lovely Gusain v. Union of India & Ors. (Case Number: W.P.(C) 16270/2024)

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.

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