Immediately Release ₹5 Crores To AIIMS Delhi For Treatment Of Children With Rare Diseases: High Court Directs Centre

The Delhi High Court has directed Union of India to immediately release Rs. 5 crores to All India Institute Of Medical Sciences (AIIMS) to ensure that treatment of children with rare diseases, where it has already commenced, is not stopped due to lack of funds.

Justice Prathiba M Singh directed the fund to be released within two weeks and that its expenditure shall be maintained by AIIMS under direct supervision of the doctor heading its Rare Diseases Committee.

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 asked the Secretary of Ministry of Health and Family Welfare to take a decision in respect of clinical trials to be conducted for testing therapies for rare diseases including DMD.

Seeking stand of the Secretary on an affidavit, the court also directed the Ministry to depute a senior official, at least of level of Joint Secretary, to join the court proceedings on March 1, the next date of hearing.

The court also directed Union of India to file an affidavit giving complete information of the funds released from Rare Diseases Fund to various Centres for Excellence and the number of patients for whom treatment has been approved till date.

Earlier, the court had asked the Central Government to consider publicising crowdfunding for treatment of rare diseases through television, radio or any other media platform in order to attract more voluntary donations from the public.

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

Citation: 2023 LiveLaw (Del) 159

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