Delhi HC Summons Union Health Secretary In Matter Concerning Treatment Of Children With Rare Diseases

The Delhi High Court recently summoned the Secretary of the Union Ministry of Health and Family Welfare in connection with a batch of petitions concerning the treatment of children suffering from rare diseases such as Duchenne Muscular Dystrophy and Hunter’s syndrome.

Justice Prathiba M Singh stated that the Union Ministry has not complied with the court’s repeated directives for the allocation of additional funds for treatment.

“It has been noted in orders dated March 23, 2021 and January 30, 2023 that a large amount of funds was, in fact, allocated for rare diseases. However, the budgets lapsed and the funds were not released,” the court stated.

According to Justice Singh, the court is in an “extreme situation” in which nearly 40 children are likely to suffer physical and mental injury and deterioration of health if further money for treatment is not given.

“Under such circumstances, the Court cannot turn a blind eye to the medical condition of the 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 and Family Welfare shall physically remain present in Court on the next date of hearing,” the court stated while scheduling the case for further hearing on May 10.

The court also remarked that, despite the fact that the Union Ministry was directed to release an additional amount of Rs.5 crores on February 15 and March 6, the amount has not been released till date.

“On the next date, the Court will consider whether a notice of contempt should be issued in these matters,” Justice Singh stated.

The petitions before the court seek free care for the patients, which would otherwise be extremely expensive.

Previously, the court asked the Union Government to consider publicizing crowdfunding for rare disease treatment via television, radio, or any other media platform in order to attract more voluntary donations from the public.