Delhi HC issues notice to Centre on plea of 11-year-old child suffering from rare disease

The Delhi High Court on Friday 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 to the Centre to release funds for continuous treatment. Justice Prathiba M Singh on Friday issued notice to the Ministry of Health and Family Welfare on the plea and listed the matter on April 13 for further hearing.
The petitioner has also prayed to direct AIIMS to forthwith procure medicines and continue to provide treatment to the petitioner and other similarly placed petitioners in connected matters.

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 petitioner 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 further submitted that the impugned inaction is in violation of the fundamental and human right to life, health, and medical aid of the petitioner suffering from as Duchenne Muscular Dystrophy (DMD) a rare genetic disease as guaranteed to him under Articles 14, 21, 38, 39, 41 and 47 of the Constitution of India.

In terms of the enhanced National Policy for Rare Diseases, 2021 Rs 50 Lakhs qua each DMD petitioner was transferred to respondent AIIMS for procurement of medicines, the plea stated.

It is submitted that respondent AIIMS procured medicine for the petitioner in the budget of Rs 50 lakhs and now treatment has commenced.

It is also submitted that on 13.03.2023 petitioner received 1st dose of Exondys 51 medicine (36 ml) out of 120 ml procured out of the budget of Rs 50 lakhs.

It is further submitted that on 20.03.2023 petitioner was infused with the 2nd dose of Exondys 51 medicine (28 ml).
The plea stated that AIIMS has procured 120 ml of Exondys 51 medicine in the allotted budget of Rs 50 lakhs.
It is also stated that as per the petitioner’s weight, 120 ml of Exondys 51 medicine is divided into 4 doses for infusion.
Therefore, the petitioner will get only 4 doses in total and the remaining two doses will be infused to the petitioner on 27.03.2023 and on 03.04.2023.

It is needless to say that though the treatment of the majority of DMD patients in other connected has started they are facing the same problem like the petitioner herein, the plea said.

All the DMD patients petitioners in other connected whose treatment has commenced with sanction fund of Rs 50 Lakhs, will get only a maximum of 3-5 infusions depending upon the weight of the patient, the plea added.
Therefore, like the petitioner, other DMD patients also require doses of medicines for which timely orders need to be placed by respondent AIIMS so that their continuous treatment is not affected, the plea submitted.

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 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.