The Delhi High Court has sought the presence of the secretary of the Union Health Ministry, stating that the judicial body cannot turn a blind eye to the medical condition of 40 children suffering from rare diseases.

Justice Prathiba M. Singh stated that the effectiveness of the medicines already administered to children suffering from rare disorders will be completely obliterated if further doses are not continued. She asked the union health secretary to be physically present in court on May 10. She also added that on May 10, she will decide whether a notice of contempt should be issued to the union health ministry or not.

The court noted that, while treatment has begun for numerous children following the allocation of Rs 50 lakh as per the regulations of the National Policy for Rare Diseases, the cash has yet to be given to some of the patients. In an affidavit dated February 15, 2023, the Ministry of Health and Family Welfare, Union of India, was instructed to release an additional sum of Rs 5 crore for the treatment of these children.

The court ordered that all of the children who had been given the medications for treatment be physically assessed and a status report on their medical condition filed by the next date of the hearing. In December 2021, the court ordered AIIMS to immediately begin treating qualified children with rare diseases and requested the Centre give cash, stating that it is distressing to watch children in this circumstance and that they cannot be left to suffer.

Earlier that year, the court issued a slew of directives concerning the treatment of people with rare diseases, including a directive to notify the National Health Policy for Rare Diseases by March 31, 2021, and to establish a National Consortium for Research, Development, and Therapeutics, a rare diseases committee at AIIMS, and a fund for such diseases. 

(Source: https://health.economictimes.indiatimes.com/news/policy/treatment-of-children-suffering-from-rare-diseases-hc-seeks-presence-of-union-health-secretary/100014450?utm_source=Mailer&utm_medium=newsletter&utm_campaign=ethealth_news_2023-05-06&dt=2023-05-06 )