Hemophiliac AIDS patients yesterday pleaded with the government to set up an ad hoc task force to ensure comprehensive assistance for them, because they have been infected with HIV by contaminated blood products.
"Regardless of who was responsible for the patients' [AIDS] tragedies, we hope the government will improve its understanding of their needs for further assistance," said Jeff Juang (
"Apart from compensation, the government should set up a comprehensive mechanism involving special medical, consulting and financial assistance to continuously cover the patients' special needs," Chan Wen-kai (詹文凱), the patients' volunteer attorney, said.
Many hemophiliac patients suffer swollen and deformed joints, impeding their movement. Those who also suffer from AIDS experience further distress and trauma because of the fear that their future has been destroyed by HIV, the virus which causes AIDS, hidden in the blood products which were supposed to save their lives, said Lee Ching-chun (
Chan called for a special medical team dedicated to the patients' needs.
"Many sufferers say that people in the Department of Health's hospitals, which have the expertise to treat AIDS patients, reject them, probably out of discrimination."
"If the government can gather doctors of various specialties who understand the patients' special situations, at least they would be spared explaining their special diseases to different medical professionals every time they are sick," Chan said.
"Besides, we need special care as the side effects of the cocktail of AIDS medications can lead to severe and uncontrollable internal bleeding," Lee said.
As hemophilia hinders the movement of patients and the fear of discrimination against AIDS sufferers makes them reluctant to spend time in public places, the organization urged the health department to adopt a practice in use in parts of Europe and the US and deliver hemophiliacs' medications to their homes.
It said the patients also need professional consultants because some of them are suffering from depression as a result of their infection with HIV.
Chan said that in 1996 a hemophiliac AIDS patient committed suicide at the hospital by banging his head against the wall after asking his mother: "Why am I different from other people?"
The organization said most patients are unable to undertake intensive work because of their ailments. It urged the government to provide subsidies and appropriate job training.
The organization was founded in 1998 by a group of hemophiliac AIDS patients.
Hemophilia is a disorder caused by errors in the part of a person's genetic code that signals a chain of steps that control bleeding by clotting. The clot-forming process depends upon a series of proteins called factors. The error leads to the lack of, or dysfunction in, some of the factors. As a result, hemophiliacs bleed for longer than non-hemophiliacs. Blood products with the crucial clotting factors are vital to the patient when internal bleeding occurs, such as bleeding into joints or muscles.
According to the Department of Health, Taiwan has had 53 hemophiliac sufferers who used contaminated blood products supplied by Bayer Pharmaceuticals in 1984 and 1985. Their infections were discovered in 1992. The department's data show that only 25 are still alive.
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