Delhi High Court Summons Union Health Secretary in Pleas Relating to Treatment of Children with Rare Diseases
Court was hearing a batch of petitions concerning children with rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc.
The Delhi High Court on Wednesday directed the Secretary of the Ministry of Health and Family Welfare to physically remain present on the next date of hearing i.e. May 10, in a batch of petitions concerning children with rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc.
“Under these circumstances, the Secretary, Ministry of Health & Family Welfare shall physically remain present in Court on the next date of hearing”, the bench of Justice Prathiba M. Singh ordered.
The single-judge bench was hearing a batch of petitions filed mostly by children suffering from rare diseases stating that the medicines and therapies for the said diseases are exorbitantly expensive.
“In the present batch of cases, the court faces an extreme situation where almost 40 children who are before the Court, are likely to suffer physical and mental injury and deterioration of health if further funds are not released for their treatment”, Justice Singh said.
The court noted that vide orders dated March 23, 2021, and January 30, 2023, a large amount of funds were allocated for 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”, it said.
“The lapse of the budget 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 court added.
Justice Singh said, “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”.
The court also stated that on May 10 it will consider whether notice of contempt ought to be issued in these matters. Additionally, court directed, “All the children who have been administered the medicines shall also be physically evaluated and a status report of their medical condition shall be placed on record by the next date of hearing”.
Case Title: Master Arnesh Shaw v. Union of India & Anr (a batch of connected matters)