Release ₹5 crore to AIIMS for treatment of children with rare diseases: Delhi High Court to Central government

The Delhi High Court recently ordered the Central government to immediately release ₹5 crore to All India Institute of Medical Sciences (AIIMS) for treatment of children with rare diseases..Justice Prathiba M Singh ordered the funds to be released in two weeks.The order was passed after the court was informed that the treatment of children has stopped at the AIIMS because the funds earlier released for the purpose have been exhausted.“Considering the fact that AIIMS, Delhi is recognised as a Centre of Excellence for treating rare diseases and is also the nodal centre of the Consortium of Centres of Excellence under the National Policy for Rare Diseases, 2021, and bearing in mind the large number of patients who have filed petitions before this court, for whom medicines are needed, it is directed that a sum of Rs.5 crores shall be immediately released by the Union of India to AIIMS, Delhi so as to ensure that the treatment of children, where it has already commenced, is not stopped due to lack of funds,” the Court said..Justice Singh was dealing with a batch of petitions filed by children suffering from rare diseases. The court was told that the medicines and therapies for the treatment of these diseases are exorbitantly expensive and therefore, directions should be passed by the court for enabling treatment and making medicines available..In the order passed on Wednesday, the High Court also directed the Secretary, Ministry of Health and Family Welfare (MH&FW) to take a decision in respect of clinical trials that are to be conducted for testing the therapies for rare diseases including Duchenne muscular dystrophy (DMD).“MH&FW shall also depute a senior official, at least of the level of Joint Secretary, to join the Court proceedings on the next date of hearing.”The matter will be heard next on March 1..[Read Order]