The Delhi High Court has summoned the Secretary of the Union Health Ministry over noncompliance with its directive directing the release of Rs 5 crore for the treatment of children suffering from rare diseases.
The court said it could not turn a blind eye to the plight of the children. Justice Prathiba M. Singh said in the order issued on May 3, “On February 15, 2023, a further amount of Rs 5 crore was directed to be released by the Ministry of Health and Family Welfare. The said direction was reiterated in an order dated March 6, 2023. However, the said amount has not been released to date.”
The bench was hearing a batch of petitions by children suffering from rare diseases seeking free treatment. Justice Singh expressed her displeasure and 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 judge noted that the children have started medication, but if a further course of medication is not forthcoming, the effectiveness of the previous doses will be lost. Under these circumstances, the Secretary of the Ministry of Health and Family Welfare shall physically remain present in court on the next date of hearing, as Justice Singh directed.
The court also said that it has been noticed in the orders of March 23 and January 30, 2021, that a large number of funds were, in fact, 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,” the bench expressed its displeasure.
The court observed that the lapse in 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 crore.
The said affidavit also demonstrated that, as against the elapsed budget, only a sum of Rs. 7 crore was spent between 2018 and 2021, as Justice Singh pointed out.
The bench also noted that the Union of India challenged the two orders. This Court was informed that no stay on the said two orders has been granted, and the Division Bench has also clarified that the pendency of the LPA would not come in the way of this Court hearing the matters further. Under these circumstances, the health ministry secretary shall physically remain present in court on the next date of hearing, the judge said.