Delhi HC issues notice on pleas seeking free treatment for children suffering from rare diseases

New Delhi [India], April 11 : The Delhi High Court on Tuesday issued notice to the Central Government and All India Institute of Medical Science (AIIMS) on a fresh batch of petitions moved on behalf of children suffering from rare diseases.

The petitions have been moved by the family members of the children seeking a direction for treatment expenses which are beyond their capacity.

Justice Prathiba M Singh issued a notice to the Centre and AIIMS.

The counsels accepted the notice for the respondents.

The matter has been listed for hearing with other connected matters on April 13.

These petitions have been moved by the parents and family members of the affected children through advocates Ashok Agarwal and Kumar Utkarsh.

One of the petitioners has sought direction from the respondents to provide free medical treatment to the child through Antisense Oligonucleotide (AON) therapy of the petitioner suffering from a rare genetic disease known as Duchenne Muscular Dystrophy (DMD) exon 49-52 deletion, as the same is of high cost and is beyond the capacity of parents of the petitioner.

It is 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 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.

It is further submitted that in May 2020, the parent came across a drug namely Viltolarsen 250 mg vial manufactured by a Japanese Company for exon deletion 49-52.

The patient was immediately taken to Rainbow Children's Hospital where the doctor prescribed the dosage as Viltolarsen 250 mg vial quantity 270 vials for a weekly dose of 1200 mg through intravenous infusions.

It is further submitted that parents approached Central Drugs Standard Control Orgsation under the Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India to obtain the approval of said vials through online submission of Form 12A.

"However on contacting the manufacturer Nippon Shinyaku Pharma of Japan, it was revealed that export of the drug to india was not feasible since the company did not have any terms and conditions for export of the drug to India," the petition stated.

It is further submitted that an email to the Secretary of Health and Family ffairs, however, no response was received.

On March 17, the parents along with the child proceeded to AIIMS where treatment for the patient was written as "amenable to Exon 53 skipping".

Petitioner's health condition is being deteriorated with each passage of time. The parents of the petitioner are running from post to pillar for the treatment of the child but all in vain.