Funding boost for patients with rare blood disorder

SINGAPORE - A simple fall at home may seem rather harmless. But for lawyer Vincent Kor, it resulted in him missing an entire year of school when was he just 10 years old.

Mr Kor, now 42, recalled how after he scraped his left knee, the cut would not stop bleeding. He is among 200 males here suffering from a rare genetic disorder, called haemophilia, that hampers blood clotting. The condition generally affects men.

Recounting the incident, Mr Kor said: "Growing up was difficult when I had to miss school. After I got out (of hospital), I had to wear a pair of calipers (on my legs), like Forest Gump did, for two years."

Over the years, his condition also weakened his joints and he now uses a walking stick.

There is no cure for haemophilia yet, but there is ongoing research into gene therapy to treat it.

Mr Kor was among 2,000 people at a charity walk organised by the Haemophilia Society of Singapore (HSS) yesterday. The event at East Coast Park was held to mark World Haemophilia Day tomorrow. The society achieved its target of raising $50,000 from the walk, its first public fundraising event since the society was established in 1985.

While appreciative, Dr Gan Kim Loon, the society's president, said the amount raised is not enough to cover the $130,000 to $150,000 it spends a year, mainly on medication subsidies for its members. "Haemophilia is one of the most expensive chronic diseases to treat," he said.

Mr Kor can certainly relate to the cost burden: He spends an average of $1,000 a month, after subsidies, for medication taken only when he bleeds.

If regular preventive medication is taken, he said his monthly costs would easily triple to $3,000. Patients typically receive a 50 to 65 per cent government subsidy. HSS members get an extra 20 to 25 per cent subsidy.

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