Rare diseases treatment: Delhi High Court summons Union Health Secretary

New Delhi: The Delhi High Court has summoned the Secretary of the Union Ministry of Health and Family Welfare in a number of petitions pertaining to the treatment of children with rare diseases like Duchenne muscular dystrophy and Hunter's syndrome.

A bench of Justice Prathiba M. Singh said that the Union Ministry has consistently refused to comply with court orders for the allocation of further funds for treatment.

The court is considering petitions that ask for the patients' very expensive treatment to be provided without charge.

"It has been noticed vide orders dated 23rd March 2021 and 30th January 2023 that a large amount of funds were, in fact, allocated for rare diseases. However, the budgets lapsed and the amounts were not released," the court said.

If further funds are not made available for treatment, Justice Singh continued, the court will be in an "extreme situation" where approximately 40 children are likely to sustain bodily and mental harm and worsened health conditions.

"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. Under these circumstances, the Secretary, Ministry of Health & Family Welfare shall physically remain present in Court on the next date of hearing," the court said.

Justice Singh then listed the matter for next hearing on May 10.

The court also noted that though on February 15 and March 6, a further amount of Rs 5 crore was directed to be released by the Union Ministry, but the amount has not been released till date.

"On the next date, the court shall consider whether notice of contempt ought to be issued in these matters," the court said.