Delhi HC Summons Union Health Secy in Case Over Treatment of Children with Rare Diseases

NEW DELHI: The Delhi High Court has summoned the Secretary of Union Ministry of Health and Family Welfare in a batch of petitions regarding the treatment of children suffering from rare diseases, including those like Duchenne Muscular Dystrophy and Hunter's syndrome.

The Secretary of the Union Health Ministry was summoned by the Delhi High Court over the non-compliance of its direction to the ministry for the release of Rs 5 crore for the treatment of children suffering from rare diseases.

The next hearing is scheduled for May 10, when the secretary has to appear in person.

In the direction, Justice Prathiba M Singh said the HC cannot turn a blind eye to the plight of the children who approached the court to help in their treatment.

Justice Prathiba M Singh said that repeated orders of the court for release of further amounts for treatment have not been adhered to by Union Ministry.

“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.

Justice Singh further added that the court was facing an “extreme situation” where, if further funds are not released, almost 40 children are likely to suffer physical and mental injury and deterioration of health treatment.

“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 while listing the matter for hearing next on May 10.

The court also noted that though a further amount of Rs.5 crores was directed to be released by the Union Ministry vide orders on February 15 and March 06, 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,” Justice Singh added.

The petitions before the court seek free-of-cost treatment for the patients, which is otherwise very expensive.

Previously, the court had asked the Union Government to consider publicising crowdfunding for treatment of rare diseases through television, radio or any other media platform in order to attract more voluntary donations from the public.

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