BENGALURU: Six-year-old Vineeth Dev is busy watching cartoons on his father’s laptop at Indira Gandhi Institute of Child Health’s Centre of Excellence for Rare Diseases. His enzyme replacement therapy is under way and will take a lot of time. He suffers from Hunter’s Syndrome. The enzyme that Vineeth needs is manufactured by only one other company, Shire, not registered in India, making its procurement difficult.
Luckily, his father’s software firm crowdsourced `62 lakh by collecting `500 each from every employee towards Vineeth’s treatment. Vamsi Krishna, the father, doesn’t know what to do once they run out of the drugs. “My son’s therapy started two months ago. After six months, I don’t know what to do,” he said. His wife Vidya says, “There are a couple of children who are getting treatment free of cost under Shire’s charitable access programme. But Vineeth is not covered because they sponsor limited number of patients only.”
Dr Sanjeeva G N, the paediatrician who runs the Centre, says if there is a policy on rare disease in place, which acknowledges that each rare disease is different and the treatment cost keeps increasing exponentially with every kilogram the child puts on, the funding process will become institutionalised and there will be a corpus to turn to.
Eleven-year-old Prajwal H chats up with his mother Vanitha J as his infusion is under way, saline dripping down his arm. His father works as a salesman in a clothing showroom. “His father earns `20,000 per month. How can we afford `5 lakh worth of drugs per month? He suffers from Gaucher. People say he looks normal and question why he should get an exemption in anything,” Vanitha says.
Gaucher is characterised by bruising, fatigue, anaemia, low blood platelet count and enlargement of the liver and spleen, and is caused by a hereditary deficiency of a particular enzyme. Prajwal attends cricket coaching at a local academy and has also played in zonal level matches. Continuous treatment enabled him to do that, his mother says.
Nidhi Shirol (19) sits patiently on a reclining sofa while she undergoes enzyme transfusion. It takes around 12 hours for the transfusion to be completed and she has to undergo this every 15 days. She suffers from Pompe disease that doesn’t allow her muscles to function normally.
The Centre was set up in public-private partnership with Organisation for Rare Diseases, a national-level parents’ support group for children suffering from ultra rare diseases in India, co-founded by Nidhi’s father Prasanna Shirol.
Nidhi is a BCom student and until recently, her mother Sharada Shirol would accompany her to class. Sharada recalls her struggle, “I remember when we went to private hospitals, they would ask us to come at a time convenient to them. Here, we are so well received.”