Father of infant with rare disease moves Kerala High Court for assistance from State to procure life saving Rs. 18 crore drug

The Kerala High Court has sought the response of the State authorities on a petition by a person seeking government assistance in procuring a drug that could cost up to Rs.18 crores to treat his 5-month-old son suffering from Spinal Muscular Atrophy (Arif Vs. The State of Kerala).Justice Bechu Kurian Thomas on June 8 issued notice to the Principal Secretary of the State as well as the Director of Health Services and asked them to submit their replies by June 28. "As a welfare State, various aspects are required to be borne in mind, including the efficacy of the drug, its staggering cost, the treatment protocols, the possibility of crowd-funding that can be raised for funding purchase of the medicine, etc. Accordingly, there will be a direction to respondents 1 and 2 to file a counter-affidavit in detail, as early as possible, not later than June 28, 2021," the Court ordered. .The order noted that the five-month-old is currently on ventilator at Government Medical College Hospital, Kozhikode. The rare disease of Spinal Muscular Atrophy has no treatment other than the administration of a single dose of the costliest drug in the world called Onasemnogene. The petitioner, represented by Advocate P Chandrasekhar, asked the court to direct the State government to import the life saving drug and provide necessary medical treatment to his son that would incur a cost of Rs. 16-18 crores.The Government Pleader requested the Court to not issue directions to the State until all appropriate pleadings have been placed before it.Justice Thomas examined the statement filed by Respondent no.4, Government Medical College, and opined that the details in the statement would not be sufficient for considering the issues involved in this case..It, therefore, proceeded to seek replies from government authorities by June 28. The case will be heard next on June 29. .Recently, the story of three-year-old Ayaansh, who suffers from the same disease, had gained national attention. Ayaansh's parents mobilised a staggering Rs.16 crore through a crowdfunding movement that was promoted by several celebrities. The drug, commonly known as Zolgensema, is a gene therapy manufactured by Novartis, USA. The Government waived import duties and GST on the drug and it was administered to the young boy in Hyderabad who is on his way to recovery currently. .[Read Order]