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New Delhi: High Court seeks presence of Union Health Secretary
40 children suffering from rare diseases
New Delhi : Stating it cannot turn a blind eye to the medical condition of 40 children suffering from rare diseases, the Delhi High Court has sought the presence of the secretary of the Union Health Ministry before it following the non-compliance of its order directing release of Rs 5 crore for their treatment. Justice Prathiba M Singh, who was hearing a batch of petitions relating to their treatment, said the effectiveness of the medicines already administered to such children would be completely obliterated if further doses are not continued and asked the official to be physically present in court on May 10 when she would consider whether notice of contempt ought to be issued.
“The Secretary, Ministry of Health & Family Welfare shall physically remain present in Court on the next date of hearing. On the next date, the Court shall consider whether notice of contempt ought to be issued in these matters. List on 10th May, 2023,” ordered the court. The petitioners before court are children suffering from several rare diseases, including Duchenne Muscular Dystrophy (DMD) and Mucopolysaccharidosis II or MPS II (Hunter Syndrome).
They have sought a direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy for these diseases is very expensive. DMD, one of the various forms of muscular dystrophy, is a rare genetic disease that affects boys almost exclusively and causes progressive weakness.
MPS II is a rare disease that is passed on in families and it mainly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons and other tissues. In the order passed on May 3, the court observed that a “large amount of funds” were allocated for rare diseases but the budgets lapsed and the amounts were not released in spite of repeated judicial orders.
“The lapse of 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,” noted the court.
The court further noted that while the treatment commenced for several children upon the release of the sum of Rs 50 lakh in terms of the National Policy for Rare Disease, the amount is yet to be released for some and thus directed that the same be released in a week.
It also noted that for some children, the initial funds have already been exhausted and their medical condition was deteriorating and the orders for releasing further Rs 5 crore have not been complied with.
