Issuing notice to Centre and AIIMS, the matter has been listed by the Delhi High Court for hearing with other connected matters on April 13.
In the latest development, the Delhi High Court on Tuesday issued notice to the central government and All India Institute of Medical Science (AIIMS) on pleas moved on behalf of children suffering from rare diseases. The petitions filed in the High Court by the family members of the affected children seeks direction for treatment expenses that are beyond their capacity.
In response to the petitions, Justice Prathiba M Singh issued a notice to the Centre and AIIMS. According to news agency ANI, the matter has been listed for hearing with other connected matters on April 13.
One of the petitioners has sought direction from the respondents (Centre and AIIMS) to provide free medical treatment to the child suffering from a rare genetic disease known as Duchenne Muscular Dystrophy (DMD) exon 49-52 deletion as the Antisense Oligonucleotide (AON) therapy of the petitioner is of high cost and is beyond the capacity of his parents.
Apart from this, it has also been submitted that the impugned inaction in the case is a 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. However, the export of the drug to India was not feasible since the company did not have any terms and conditions for the export of the drug to India.
The parents of the petitioner also approached Central Drugs Standard Control Organisation 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. It was further informed that they even wrote an email to the Secretary of Health and Family Affairs, however, no response was received.
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