Kochi: The father of a five-month-old baby, battling a rare disease, has moved the Kerala High Court, seeking help to import a life-saving medicine from abroad. Imran, son of Tirur native Arif, is on ventilator support at the Kozhikode Medical College.
The baby, suffering from spinal muscular atrophy, requires a single dose of the medicine onasemnogene, as per the petition. A single dose would cost around Rs 16-18 crore. The petition has sought that the government should be directed to import the medicine from abroad and give the necessary treatment.
Justice Bechu Kurian Thomas said that the case needed the serious attention of the health services director, principal secretary and district medical officer. They have been directed to file a detailed counter-affidavit by June 28. The hearing in the petition has been adjourned to June 29. As a welfare state, several factors such as the efficacy of the drug, the high cost, treatment protocol, and raising money through crowd-funding to purchase the medicine need to be considered, the court said.
Earlier, around Rs 19 crore was raised through crowdfunding for a Hyderabad boy, Ayaansh Gupta, also suffering from the same rare disease. The money was mobilised through social media campaigns to procure Zolgensma, the world's most expensive medicine, from America for Ayaansh. The central government had also waived an import duty of Rs 6 crore.
Imran was diagnosed with the disease after he was unable to move his hands when he was only 40 days old. Though he was admitted to a private hospital in Kozhikode, he was moved to the Medical College in March. He has been on ventilator support for three months. His parents, who had earlier lost a baby, are making desperate attempts to save Imran.
