NEW DELHI: The Delhi High Court has asked the secretary of the Union Health Ministry to remain present before it following the failure to release funds meant for children suffering from several rare diseases even after repeated court orders.
Justice Prathiba M Singh said the ‘court cannot turn a blind eye’ to the medical condition of 40 children suffering from rare diseases, including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome).
Hunter syndrome is a rare, inherited disorder in which the body does not properly digest (break down) sugar molecules, while DMD is also an inherited disorder of progressive muscular weakness. Regarding their treatment, the petitioners said the effectiveness of the medicines already administered to such children would be completely obliterated if further doses were not continued.
As per earlier court orders, a large amount of funds were allocated for the rare diseases, however, the budgets lapsed and the amounts were not released. “Repeated orders of this Court for release of further amounts have not been acceded to by the Ministry,” the court observed.
“The budget lapse has also been confirmed in the affidavit by the Ministry of Health and Family Welfare, Union of India to the tune of almost Rs. 193 crores. The said affidavit also demonstrated that as against the elapsed budget, only a sum of Rs.7 crores was spent between 2018 till 2021”, the order stated.
“Under such circumstances, the court cannot turn a blind eye to the medical condition of 40 children who are Petitioners before the court. The medicines which have already been administered, their effectiveness would also be completely obliterated if further doses are not continued for the said children,” it added.
The judge also asked the official to be physically present in court on May 10 when she would consider whether notice of contempt ought to be issued. The court further directed that all the children who have been administered the medicines for treatment shall be physically evaluated and a status report of their medical condition shall be placed on record by the next date of hearing and said the Rare Diseases Committee in AIIMS here is “expected to act with alacrity in all these matters and not to take matters in a cavalier manner”.