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Three-quarters of Indonesian children who are known to suffer from hemophilia don’t receive the proper medication that allows them to lead normal lives, an activist says.

Moeslichan, chairman of the Indonesian Hemophilia Community Association (HMHI), said on Wednesday that the main obstacle was the prohibitively high cost of the deficient clotting factor, which sufferers must inject on a regular basis.

“The injections for hemophilia are very expensive: each unit of the [deficient clotting] factor costs 50 cents, and a person needs five hundred to a thousand units per shot,” he said, adding each shot could cost Rp 3 million ($350). “And a person with hemophilia may need three shots per week.”

Hemophilia is a genetic disorder that impairs the body’s ability to control blood clotting, thus rendering its sufferers prone to hemorrhaging from even minor wounds. The disorder is divided into two groups: hemophilia A sufferers have a deficiency in the clotting factor VIII, while those with hemophilia B have a deficiency in the clotting factor IX.

“If hemophilia isn’t managed properly, the patient will be unable to walk or move properly because of swelling in the legs and will die at a very young age,” Moeslichan said.

The disorder occurs in one in 10,000 people, meaning Indonesia could have up to 23,000 hemophiliacs. However, the HMHI says its data shows only around 1,200 patients in the country.

The group says there are five times as many Indonesians suffering from hemophilia A as there are those with hemophilia B. Hemophilia A is considered far more deadly than hemophilia B.

“Most of them aren’t screened, and this is very dangerous because they need a lifetime of medication,” Moeslichan said, adding that the disorder was rare in females.

Tunggul Situmorang, director of MRCCC Siloam Hospital in Semanggi, South Jakarta, said the challenge was to provide affordable treatment to patients without access to the much-needed medication.

“Affordable and good-quality medication is what they need,” he said. “If we can screen them, we can help hemophilia patients.”

To commemorate World Hemophilia Day, which falls on Sunday, MRCCC Siloam Hospital is planning a free seminar on Saturday for members of the public interested in learning more about the disorder. The hospital is also offering a 50 percent discount on blood screening tests for hemophilia starting on Saturday and running until the end of May. The tests usually cost Rp 310,000.

“Hemophilia isn’t just suffered by babies,” said Eka Tjokrosetio, coordinator of the hospital’s clinical pathology division. “Sometimes those in their 20s can also suffer the disorder, but with much less severe conditions.”

Eka added that MRCCC Siloam Hospital planned to set up a foundation for people who could not afford expensive medications.