GUANGZHOU - Hundreds of hemophiliacs in Guangdong province face death owing to the scarcity on the domestic pharmaceutical market of effective medication for the disease.
Hemophilia is a genetic disorder characterized by abnormally low clotting factors in the blood that puts sufferers at risk of bleeding to death.
The main treatment for hemophilia is called replacement therapy, whereby patients receive transfusions that either supply the blood with clotting factors or boost those present in it. Hemophiliacs cannot expect to survive without regular treatment.
"Weekly transfusions on a permanent basis are the only way of sustaining the lives of hemophiliacs," Huang Zikai, vice-director of Hemophilia Home of China, said. Huang himself suffers from the condition.
But since summer last year, the supply of domestic clotting factors has dropped significantly.
Deng Shoudong, a 27-year-old hemophiliac, said he has no choice but to give up his treatment, because he can neither find domestically produced clotting factors to buy nor afford those that are imported.
"The profits gained from producing this medication are very small," a patient's mother surnamed Lai told China Daily. "And producing it is risky too, because clotting factors are produced from donated blood, which means patients receiving transfusions run the risk of being infected with the HIV virus. "
Huang said: "As the number of hemophilia patients is relatively low, many drug companies in China have stopped producing clotting factors."
Legal supplies of the medication are further constrained by certain private drug agencies that sell the rare domestic clotting factors to patients under the table at inflated prices .
Seeing no way out of their quandary, Huang and several other patients in Guangzhou have been sending letters to Guangdong health department, Guangdong food and drug administration, and Guangzhou health bureau since July last year, in hopes of receiving some form of aid.
"We hope that in future hospitals will be allowed to purchase clotting factors directly from pharmaceutical producers; that there will be a clampdown on agents illegally selling the medication," Huang said.
But they are yet to receive any clear feedback.
"We are investigating the situation and the relevant department is doing its utmost to solve the problem," Yu Dewen, the spokesman of Guangdong health department said.
One item of good news for Guangzhou patients is that the local food and drug administration has purchased a batch of imported clotting factors, even though importing such medication originating in foreign countries was formerly prohibited.
Imported clotting factors, however, at 1,320 yuan ($190) a bottle, are very expensive, compared with the 250 yuan of a bottle produced domestically.
Deng, who is living in poverty, can no longer afford the imported clotting factors that keep him alive. Even if he could, exactly how much of the medication the local food and drug administration imports in the future remains uncertain.
Resolving this shortage on the domestic market is the key to the problem, but the government's reaction is too slow, Huang said.
"We have appealed for their attention many times, and done everything we possibly could in the past year."