Delhi High Court issued a notice to the Central Government on a plea moved by an 11-year-old child suffering from the rare disease Duchenne Muscular Dystrophy (DMD). The child has sought direction from the Centre government to release funds for continuous treatment.

The bench of judge Justice Prathiba M Singh issued notice to the Ministry of Health and Family Welfare on the plea and listed the matter on April 13 for further hearing. The application has been filed by advocate Ashok Agarwal and Kumar Utkarsh has alleged inaction on the part of the government to consider the case of the petitioner for treatment through Antisense Oligonucleotide (AON) therapy of the petitioner. The child is suffering from a rare genetic disease known as Duchenne Muscular Dystrophy (DMD). Treatment is of high cost and is beyond the capacity of the parents of the petitioner, the plea stated.

It is also prayed to direct the All India Institute of Medical Sciences (AIIMS) to provide free of cost treatment to the petitioner.

It is submitted that normally the result of the dose infused is seen at least after 6 months. Therefore, it is much required in the interest of DMD patients' petitioner children, that they may be provided with infusions of Exondys 51 medicine or other concerned medicines continuously. The Union of India and AIIMS are required to arrange for funds and place orders for the medicines in advance.

Therefore, respondent Union of India is required to sanction funds at the earliest to respondent AIIMS so that treatment of the petitioner and other similarly placed petitioners whose treatment has commenced and treatment will cease after 3-4 doses of medicine can get further doses before the next date of hearing on 13.04.2023, the plea stated.