Consider Publicizing Crowdfunding Platform For Rare Diseases On TV, Radio To Attract More Voluntary Donations: Delhi High Court To Centre

The Delhi High Court has asked the Central Government's Ministry of Health and Family Welfare to consider publicizing crowdfunding for treatment of rare diseases through television, radio or any other media platform in order to attract more voluntary donations from the public.

Observing that the efforts made so far have not yielded much results as the issue of rare diseases has not gained enough importance in society, Justice Prathiba M. Singh said: "Thus, the Ministry of Health and Family Welfare should consider publicity through a television or a radio platform or in the form of publicity through other media in order to attract more voluntary donations for rare diseases."

The court was hearing a clutch of petitions concerning children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's syndrome. The petitions seek free-of-cost treatment for the patients, which is otherwise very expensive.

The court was apprised by the central government that crowdfunding platforms are being publicized using proper and effective channels.

Justice Singh was informed that the Ministry of Health and Family Welfare had requested donations for rare diseases to be included in Schedule 7 of Companies Act as corporate social responsibility (CSR). However, the Ministry of Corporate Affairs is yet to revert on the same.

"It is directed that in order to ensure specific recognition of donations for rare diseases, this court is of the opinion that the same ought to be included in schedule 7, as requested by the MoHFW," the court said.

Accordingly, the court sought an affidavit from the Ministry of Corporate Affairs providing the status of the request.

The matter will now be heard on January 30, 2023.

Title: Master Arnesh Shaw v. Union of India & Anr.