Arian Chowdhury can finally heave a sigh of relief. The 12-year-old boy from Kolkata who was diagnosed with a rare lysosomal storage disorder called Hunter Syndrome at the age of 4, will finally receive treatment free of cost.
American drug manufacturer Shire that produces Elaprase, the only drug to treat this condition, has agreed to provide treatment to the boy free of cost for the rest of his life. The drug, which is a form of enzyme replacement therapy, needs to be given every week and costs Rs 3-4 lakh per week.
The annual cost can be in excess of Rs 1.2 crore though it varies from patient to patient. Since the medicine is expensive, many patients are left without treatment. But once the medicine is administered, it needs to be continued for the rest of the patient’s life.
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Shire agreed to fund Arian’s treatment under its Charitable Access Program (CAP), where it selects patients from across the world diagnosed with various rare diseases such as Gaucher, Fabry and MPS II (Hunter Syndrome). Lauren O’Brien, in charge of Communications and Public Affairs at Shire, confirmed this via email response: “Arian’s physician applied to the Shire Charitable Access programme and his application was submitted to and selected by an Independent Medical Expert Committee. We are very happy to be able to help Arian and others in this program.”
While there are others from India who have been selected as part of CAP, the exact number of patients is not known. Shire responded saying a “significant number of patients” had been selected for this. Though Arian has been suffering for many years now, his case came to light in recent months after over one lakh signatures were achieved through an online petition on change.org in June this year. A subsequent meeting with Health Minister Dr Harsh Vardhan promising to offer Arian help, gave a boost to his chances of getting treatment.
Arian’s father Sib Sankar Chowdhury, who works as an IT support executive in Kolkata, is elated by the news. “In March when we visited our doctor in Delhi she applied for his treatment. I am glad our efforts paid off and Arian will finally be able to lead a normal life,” he said. Arian would frequently visit Delhi where he was receiving therapy under the care of Dr Ratna Dua Puri, vice-chairperson, Centre for Medical Genetics at Sir Ganga Ram Hospital.
All about The disease
What is it: A rare genetic disease that interferes with the way cells and organs function in the body. Only seen in males, the disease affects one in 5,000 people. Most other rare diseases affect one in 2,000. Named after Scottish physician Charles A Hunter in 1917, there are an estimated 120 patients suffering from the disease in India.
Symptoms: Not easily visible at birth, the first signs such as ear infections, runny nose and cold are common to other childhood illnesses. Thus, it takes a long time to diagnose. Other symptoms include stiffness in joints, limited movements, a nose with a flattened bridge, coarseness of skin and prominent forehead, among others.
Treatment: Apart from palliative care, there is a drug Elaprase, developed by US drug manufacturer Shire Human Genetic Therapies Ltd, which is the only known drug to effectively treat patients suffering from this syndrome. Once the patient starts taking the medicine is has to be continued life long.