Monday, June 5, 2023

Delhi High Court orders Central government to release Rs 5 crore to AIIMS for treatment of children with rare diseases

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The Central government was ordered by the Delhi High Court for immediately releasing amount of Rs 5 crore to All India Institute of Medical Sciences (AIIMS) for the treatment of children with rare diseases.

The order was given by Justice Prathiba M Singh who instructedbthe funds to be released in two weeks.

The court passed this order after it was informed how after the funds given to AIIMS for this purpose have been and the treatment of children has stopped.

The court while considering the fact that AIIMS, Delhi is recognised as a Centre of Excellence for treating rare diseases and also the nodal centre of the Consortium of Centres of Excellence under the National Policy for Rare Diseases, 2021.

The court while keeping in mind the large number of patients who have filed petitions before this court, for medicines they need,has directed that a sum of Rs.5 crores to 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 order was given by Justice Singh while she was dealing with a batch of petitions filed by children suffering from rare diseases. 

The court was told about the exorbitantly priced medicines and therapies for the treatment of disease,it was also requested to give directions for enabling treatment and making medicines available.

As per the order passed by the Delhi High court, the Secretary, Ministry of Health and Family Welfare (MH&FW)has been directed  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).

The court has also instructed the Ministry of Health and Family welfare for deputing a senior official, at least of the level of Joint Secretary, for joining  the Court proceedings on the next date of hearing.

The matter will be heard next on March 1.

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