I am hopeful that something will be done for my son after meeting [Union Health Minister] Harsh Vardhan, said Sib Sankar Chowdhury, father of Arian who is suffering from a rare disease called Hunter Syndrome.
Mr. Chowdhury is back in the city after meeting the Union Minister in New Delhi on June 20. Thirteen-year-old Arian is suffering from a metabolic disease where the cells in his body are gradually disintegrating due to deficiency of a crucial enzyme. This is eventually leading to malfunctions in the organs of his body. Globally, about 2,000 people, out of seven billion, are known to be suffering from this severe and life-limiting disease. Approximately, 80-100 children in India are diagnosed with Hunter Syndrome and the children do not cross their teenage years.
While there is a medicine for Arian’s disease, which is genetic in nature, it is beyond the reach of Mr. Chowdhury.
“The medicine, Elaprase, needs to be given on a weekly basis and based on the report prepared by AIIMS, the cost for Arian’s dose for a single week is approximately Rs. 3 lakh and almost Rs. 1.5 crore per year. As of now, the medicine is available only in the USA,” Mr. Chowdhury told The Hindu .
Mr. Chowdhury had met Dr. Harsh Vardhan to request him to make the medicines available in India and subsidise its price.
“Dr. Harsh Vardhan assured us that he would look into the appeal and sought a report from AIIMS regarding Arian’s health and what can be done for him. He was supposed to have received AIIMS’ report on Monday, we are awaiting his reply,” Mr. Chowdhury said.
