Delhi HC seeks Centre's help in funding clinical trials to treat diseases like DMD

The Delhi High Court (HC) has asked the Union government if it could release funds immediately so as to enable clinical trials for medicines that can help treat rare diseases like Duchenne Muscular Dystrophy (DMD).

The plea sought directions to provide the children suffering from rare diseases like DMD and Hunter's syndrome with free treatment.

The petitioner informed Justice Prathiba 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 Limited in January 2021.

As per the MoU, a multi-centric study for therapeutic evaluation with respect to DMD patients will be conducted by Hanugen. The HC, however, noted that as per the agreement 50 per cent of the study would be funded by the Centre while the remaining will come from the company.

According to the Muscular Dystrophy Association, Duchenne muscular dystrophy (DMD) is defined as a "genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact". The symptoms of DND arrive in early childhood, usually between ages 2 and 3. The disease primarily affects boys, girls are less susceptible to the disease.

Triggered by Bollywood actor Kajol's recent film Salaam Venky, this rare disease which isn't very common in India is being talked about and noticed by medical practitioners.

In the film, released on December 9, Kajol plays the mother of a 24-year-old boy who is suffering from DMD, and the narrative revolves around his struggle.

With inputs from IANS