The Delhi High Court has recently ordered the Centre to immediately release Rs. 5 crores to the All India Institute of Medical Sciences (AIIMS) to ensure that treatment of children with rare diseases, which has already begun, is not halted due to a lack of funds.
Justice Pratibha M. Singh ordered that the fund must be released within two weeks and its expenditures must be managed by AIIMS under the direct supervision of the doctor heading its Rare Diseases Committee.
The Court was hearing a clutch of petitions from children with rare diseases such as Duchenne Muscular Dystrophy (DMD) and Hunter’s syndrome. The petitions ask for free treatment for the patients, which would otherwise be very expensive.
The court requested that the Secretary of the Ministry of Health and Family Welfare to take a decision on clinical trials to be conducted for testing therapies for rare diseases such as DMD.
The court also directed the Ministry to depute a senior official, at least of the level of Joint Secretary, to join the court proceedings on March 1, the next date of hearing, in order to obtain the Secretary’s stand on an affidavit.
The court also ordered the Union of India to file an affidavit detailing the funds released from the Rare Diseases Fund to various Centres of Excellence, as well as the number of patients whose treatment has been approved till date.
Previously, the court asked the Central Government to consider publicising crowdfunding for rare disease treatment via television, radio, or any other media platform in order to attract more voluntary donations from the public.
