Treatment of children suffering from rare diseases: HC seeks presence of Union Health Secretary

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 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.

“Vide orders dated 15th February, 2023, further amount of Rs 5 crore was directed to be released by the Ministry of Health & Family Welfare, Union of India. The said direction was reiterated in order dated 6th March, 2023. However, the said amount has not been released till date,” the court said.

The Centre has filed an appeal against these orders but there is no stay by the division bench, it added.

The court directed that all the children who have been administered the medicines for treatment shall be physically evaluated and a status report of their medical condition shall be placed on record by the next date of hearing and said the Rare Diseases Committee in AIIMS here is “expected to act with alacrity in all these matters and not to take matters in a cavalier manner”.

“The court faces an extreme situation where almost 40 children who are before the Court, are likely to suffer physical and mental injury and deterioration of health if further funds are not released for their treatment,” the court 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 medicines which have already been administered, their effectiveness would also be completely obliterated if further doses are not continued for the said children,” observed the court.

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In December 2021, the court had directed AIIMS to forthwith start the treatment of eligible children suffering from rare diseases and asked the Centre to provide funds, saying it is painful to see children in this situation and they cannot be made to suffer.

It had said the direction to AIIMS and other Centres for Excellence (COE) to commence the treatment of these children will include procurement of medicines for which expense will be borne by the central government and funds will be given to COE.

Earlier that year, the court had passed a slew of directions in connection with the treatment of persons with rare diseases, including a direction to notify the National Health Policy for Rare Diseases by March 31, 2021 and setting up a National Consortium for Research, Development and Therapeutics, a rare diseases committee at AIIMS and a fund for such ailments.

Earlier this year, the court had directed the Centre to release Rs 5 crore to AIIMS for treatment of children suffering from rare diseases.

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