Kids mark World Haemophilia Day with visit to biotech firm

Children with haemophilia, such as 10 -year-old Adyan Ul-Haque, become scientists for a day to discover how blood clotting factors help manage their bleeding disorders.
Children with haemophilia, such as 10 -year-old Adyan Ul-Haque, become scientists for a day to discover how blood clotting factors help manage their bleeding disorders.ST PHOTO: ARIFFIN JAMAR

SINGAPORE - Five children, including three with haemophilia, got the chance to see how drugs for the blood disorder are made on Monday (April 17), when biotechnology firm Shire invited the Haemophilia Society of Singapore to tour its manufacturing plant in Woodlands. The visit, which featured a lab tour and games stations, was organised to mark World Haemophilia Day.

People with haemophilia do not have enough clotting factors in their blood, which puts them at risk of uncontrollable bleeding. Internal bleeding can occur. About 400,000 people around the world are believed to live with the disease, although many go undiagnosed or lack access to adequate treatment.

The Woodlands plant produces recombinant factor VIII from cell lines, which patients can take through intravenous injections to stimulate healing.

Treatment can be done as prophylaxis - when regular injections of clotting factor are given to keep patients in good shape - or when bleeding happens.

A significant challenge, according to Haemophilia Society of Singapore executive committee member Melvin Tan, 46, is the cost of the medicine, especially because the dosage is dependent on body mass.

Singapore residents receive medical subsidies from the Government, he said, and the society raises funds to help patients and caregivers with the remaining expenses. The society offers up to $400 a month for child patients and up to $800 a month for adults who need financial assistance.

Diagnosed as a toddler, Mr Tan said that he is optimistic about the improving prospects for children with haemophilia.

When he was younger, it was the norm to use clotting factors derived from human blood, which put patients at risk of contracting blood-borne diseases such as hepatitis. In addition, the prohibitive prices meant that most patients underwent treatment only when they experienced bleeding.

As access to treatment was more limited then, many haemophiliacs of his age developed joint damage owing to internal bleeding - including Mr Tan himself.

"Because I have seen the treatment of haemophilia from those days to these days, I am confident that the younger generation will be able to lead more and more productive, normal lives," he said.

"The psychological side of it is very good, because they can participate in activities with their peers."

Mr Tan, who works in commercial photography and digital marketing, added: "This (prophylaxis treatment) will help them to be very productive members of society in future, because this will help them to be the best that they can be."

Tour participant Nikki Phoon, who is six, was diagnosed with haemophilia when he was just six months old, after his parents noticed that he had bruises that did not go away.

His mother, Madam Chan Ah Tee, 41, is no stranger to the disease - she has a brother with the condition. Still, she teared up when she recalled receiving the bad news from doctors.

Nikki, who starts primary school next year, now receives clotting factor injections twice a week - a task that Madam Chan is learning to carry out on her own.

"It's a journey that we must take one step at a time," she said in Mandarin, noting that Nikki is an active child who enjoys cycling. "We've told his teachers to treat him as per normal."

The part-time saleswoman and her husband, who works in a kitchen, have two other children, aged seven and 10. Madam Chan said that they see a social worker who helps them work out how to manage the cost of treatments.

Another parent at the manufacturing plant visit, Mrs Mireille Fortoul, was upfront about the hefty cost of treatment. She administers weekly clotting factor injections to her seven-year-old son, Baptiste, a student at the Canadian International School. It sets her family back by $800 each time.

The Fortouls, who are from France, have lived in Singapore since 2015. Baptiste was diagnosed at 14 months, when his nose started bleeding profusely. Despite that, he is into sports, playing football at school, on top of table tennis and golf.

Mrs Fortoul, 44, said that she has taught Baptiste and his siblings to tell her at once if he is accidentally hit during play or if he experiences internal bleeding.

"If he says his body hurts, we believe him," the housewife said, adding that the pain could be a symptom of internal bleeding.

"I just hope that the medicine will continue to improve, so that Baptiste can lead a normal life."