Delhi High Court Constitutes Committee To Oversee Operation Of Crowd Funding Platform For Rare Diseases Treatment

The Delhi High Court has constituted a Committee to supervise and oversee the operation of Union Government's crowd funding digital platform for treatment of people with rare diseases.

Justice Sachin Datta directed that the Committee shall take adequate steps to spread awareness regarding the existence and objective of the platform.

The Court said that the aim should be to encourage potential donors to make contributions for the treatment of individuals suffering from rare diseases.

The members of the Committee are as follows:

- Chairperson: Dr. Rajiv Bahl, Secretary, Department of Health Research, Ministry of Health and Family Welfare, Government of India and Director General, Indian Council of Medical Research

- Member: Dr. V.K. Paul, Member (Health), Niti Aayog, Government of India

- An officer at the level of Joint Secretary, MoCA, Government of India [who is in charge of overseeing implementation of the Companies (Corporate Social Responsibility Policy) Rules, 2014], to be nominated by the Secretary, MoCA

- An officer at the level of Joint Secretary in the Department of Public Enterprises, Ministry of Finance, Government of India, to be nominated by the Secretary of the Department

The Court directed that the Committee shall made an endeavour to reach out to the Public Sector Undertakings (PSUs) to sensitise them and encourage them to make voluntary contributions.

“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,” the Court said.

It added that there shall be a meeting at least once month in the office of the Chairperson or as may be decided by the Committee.

Justice Datta was dealing with a plea filed by a minor girl through her parent. She was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare and life threatening genetically inherited degenerative neuro muscular disease.

It was her case that the therapy is neither presently approved nor manufactured in India, but can be imported from USA with a doctor's recommendation and government's approvals.

It was contended that despite having a recommendation letter from the Centre of Excellence as per the National Policy for Rare Disease, 2021, recommending import and administration of the drug, her parents were unable to import the same due to exorbitant costs.

Justice Datta agreed with Central Government's counsel's stand that funding initiatives taken through CSR are monitored, planned and executed by the Board of concerned companies (Public Sector Undertakings) and that no mandamus can be issued to any such company to earmark its CSR Funds for providing treatment to the individuals suffering from rare diseases.

However, the Court added that it would certainly be desirable to sensitise the PSUs to undertake activities or initiatives relating to individuals suffering from rare diseases and to earmark CSR funds for the same.

On this, the judge noted that the crowd funding platform set up by Union Ministry of Health and Family Welfare has not met with the desired response and that funds garnered thus far have been quite meagre.

“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,” the Court said.

It added 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.

The Court said that 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, all efforts must be made to ensure that the innovative measure undertaken by the Union Government by setting up of voluntary Crowd Funding Platform receives the success and results that it deserves.

The judge agreed with the petitioner's suggestion of constituting a Committee to oversee the digital platform.

“ 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,” the Court said.

Counsel for Petitioner: Mr. Vikas Singh, Sr. Advocate along with Mr. Varun Singh, Ms. Bhumi Sharma, Ms. Vasudha Singh, Ms. Deepika Kalia, Mr. Sudeep and Md. Atif Ahmad, Advocates

Counsel for Respondents: Mr. N. Venkataraman, ASG along with Mr. Kushagra Kansal, SPC and Mr. Rudra Paliwal, GP for UOI; Mr. Ripudaman Bhardwaj, CGSC for UOI; Mr. Rajiv Kapur, SC for SBI and Mr. Akshit Kapur, AOR for R-4 (SBI); Mr. Tanveer Oberoi, Advocate for AIIMS

The matter will now be heard on December 22.

Title: MISS KIARA RAWAT THROUGH MRS. LOVELY GUSAIN v. UNION OF INDIA & ORS

Citation: 2025 LiveLaw (Del) 1415

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