Free treatment of children with rare diseases, Delhi HC seeks AIIMS response

New Delhi: Taking cognizance of the pleas concerning the free treatment of children with rare diseases like Duchenne Muscular Dystrophy (DMD), Hunter's Syndrome, etc., the Delhi High Court on Monday seeks the response of the premier health institute, All India Institute of Medical Science (AIIMS) New Delhi in the matter.

On December 22, last year, a single-judge bench of Justice Prathiba M. Singh had directed the Centre to release Rs 5.35 crore immediately so as to enable clinical trials for medicines that can help treat such rare diseases.

"The court believes that the development of treatment for children with rare diseases should be considered a 'Nationally Important Project' due to the enormity of the issues confronting these children," she had said.

Dr Kanika from AIIMS apprised the court that the tender has been given and the amount will be released in September 2023.

At this, Justice Singh remarked: "This is just shocking, I can't believe AIIMS is behaving like this."

The court then directed the doctor to be present in court on the next date of the hearing and listed the matter for review after 10 days.

The petitioner, who sought directions to provide the children suffering from rare diseases like DMD and Hunter's Syndrome with free treatment, had earlier informed Justice Singh that a Memorandum of Understanding (MoU) with respect to the indigenous development of therapies for rare diseases was signed between Biotechnology Industry Research Assistance Council and Hanugen Therapeutics Private Ltd in January 2021.

As per the MoU, a multicentric study for therapeutic evaluation with respect to DMD patients will be conducted by Hanugen.

The HC, however, had noted that as per the agreement, 50 percent of the study would be funded by the Centre while the remaining will come from the company.