$20,000 a month to manage his blood disorder
Friday is World Haemophilia Day. More than 200 people in Singapore have been diagnosed with variations of the disorder. JUDITH TAN (juditht@sph.com.sg) speaks to a patient with a rare form of haemophilia
His father is a taxi driver, his mother, a housewife.
And when it comes to the cost of treatment that their son, student Benjamin Tang, is undergoing, their monthly household income is barely enough to cover the $20,000 a month.
Fortunately, selfless donors are helping Benjamin's family shoulder his medical expenses. They requested to remain anonymous.
Benjamin, 17, suffers from haemophilia with inhibitors, a complication of the genetic disorder which is passed from his mother's side of the family. (See report above.)
His body is missing "a tiny factor" needed to form a blood clot, but the antibodies in his blood starts to fight against the proteins used in the treatment, preventing it from fixing any bleeds.
His doctor, Dr Koh Pei Lin, a consultant in the division of Paediatric Haematology-Oncology at the National University Hospital (NUH), said Benjamin needs to inject eight vials of FEIBA (Factor Eight Inhibitor Bypassing Agent) once or twice a day, depending on the severity of bleed, until it stops bleeding.
"Sometimes up to five days," she said.
"He is having on-demand therapy, that is, he needs injections only when he has a bleed, as (preventive) therapy will be too expensive."
Benjamin, who will be starting his term at Ngee Ann Polytechnic next week, is grateful for the financial assistance.
He was only six months old when he had multiple bruises on his chest.
"My parents took me to a TCM practitioner. He took one look and told them something wasn't quite right and advised them to take me to the hospital," he recalled.
A month later, Benjamin suffered a swollen knee due to bleeding. Doctors had to give him Factor VIII injections to replace the missing protein to stem the blood flow.
Benjamin's situation, however, worsened after he turned a year old. He developed severe complication of haemophilia, in which his body started to produce antibodies that fight against his treatment.
STOP BLEEDING
They prevent the jabs from stopping his bleeds, rendering Factor VIII treatment useless, explained Dr Koh.
She had to resort to using bypassing agents to treat Benjamin's bleeds.
The New Paper believes that there are only five boys in Singapore with this rare condition, Benjamin included.
In 2009, when Benjamin was 10, Dr Koh tried immune tolerance induction therapy on him, to get his body to accept Factor VIII.
Unfortunately, it failed and "it meant he could never go back to being treated with Factor VIII," said Dr Koh, who also heads the Paediatric Intensive Care Unit at the hospital.
Dr Koh now turns to what is called bypassing agents. Instead of replacing the missing factor, they go around the inhibitor and help the body form a clot to stop bleeding.
Benjamin needs to inject FEIBA once to twice a day.
"Previously, the Factor VIII treatment was subsidised, but with bypassing agent, there is no subsidy as this is a non-standard treatment since this is a very rare disease," Dr Koh said.
Benjamin is determined to learn more about his disorder and will be studying pharmaceutical science at the polytechnic.
He needs injections only when he has a bleed, as (preventive) therapy will be too expensive.
— Dr Koh Pei Lin on Benjamin Tang's condition
WHAT IS HAEMOPHILIA AND HOW CAN IT BE TREATED?
Haemophilia is a rare inherited blood disorder in which the blood does not clot properly.
People with haemophilia do not bleed any faster than normal, but they can bleed for a longer time. About 1 in 10,000 people is born with it.
TYPES OF HAEMOPHILIA:
Haemophilia A is the most common. It is when the person does not have enough clotting Factor VIII.
Haemophilia B is less common. A person with haemophilia B does not have enough Factor IX and the result is the same, they bleed for a longer time than normal.
Haemophilia with inhibitors is when complications set in. The person's immune system reacts to proteins in factor concentrates, treating them as if they are harmful foreign substances. When this happens, antibodies form in the blood to fight against the factor proteins, stopping them from fixing the bleeds.
Signs:
- Big bruises
- Bleeding into muscles and joints
- Spontaneous or sudden bleeding
- Prolonged bleeding
Treatment:
The missing clotting factor, be it Factor VIII or Factor IX, is injected into the bloodstream. The bleeding stops when enough clotting factor reaches the spot that is bleeding.
For haemophilia with inhibitors, drugs called bypassing agents are used to work around antibodies and help blood clot.
SOURCE: WORLD FEDERATION OF HAEMOPHILIA
Haemophilia Society of Singapore
There are over 200 peoplein Singapore diagnosed with variations of haemophilia, a genetic blood-clotting disorder.
According to the Haemophilia Society of Singapore (HSS), a haemophilia patient spends, on average, $3,000 to $4,000 a month on regular infusions of clotting factor to prevent spontaneous bleeding.
Patients typically receive a 50 to 65 per cent government subsidy and HSS members get an extra 20 to 25 per cent subsidy. With the subsidies, the treatment costs about half the usual price.
The nonprofit society, established in 1985, spends about $130,000 to $150,000 a year, mainly on medication subsidies for its members.
To donate to HSS, log onto the Haemophilia Society of Singapore's website at haemophilia.org.sg or e-mail haemophilia.sg@gmail.com.
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