Taiwan Today

In 1986, 36-year-old Taipei resi­dent Chi Chia-wei (郝家威) announced to a crowd of TV cameramen and reporters that he was homosexual and planned to launch a campaign to prevent the spread of acquired immune deficiency syndrome (AIDS) in Taiwan. Audiences were so shocked that they suspected he was a phony. "Many people were a little suspicious when they first heard or read reports of my press conference," Chi says. "They wondered, 'How could there be a homosexual in Taiwan who is willing to step forward? Is he a government agent in disguise?'"

Few doubt Chi's sincerity today. As Taiwan's only full-time AIDS activist, he has become synonymous with the cause. But the difficulties he faced in starting his campaign illustrate the challenges inher­ent in fighting the disease. Taiwan society shuns those at highest risk—homosexu­als, intravenous drug users, and prosti­tutes and their clients. Yet in order to fight AIDS, those groups must be willing to come forward and work with the medical community and the government.

Compared with other regions of the world, Taiwan has relatively few re­corded cases of AIDS. According to gov­ernment records, 1986 was the first year a local resident contracted the disease. The total number of reported cases rose to eighteen in 1989 and to sixty-three in 1992. Meanwhile, the number of identi­fied carriers of human immune deficiency virus (HIV)—the virus believed to cause AIDS—increased from 128 in 1989 to 424 as of February, 1993. As of that month, according to Department of Health (DOH) records, 57 people had died of AIDS-re­lated causes.

Worldwide, 1.7 million people have died of the disease and 10 to 12 million people are now infected with HIV, accord­ing to the Geneva-based World Health Organization. Half of these carriers are in sub-Saharan Africa. Elsewhere, Asia and Latin America each have 1.5 million car­riers, North America has 800,000, Europe has 500,000, and Northern Africa, Middle East, and Eastern Europe have a com­bined total of 200,000. Projections for the growth of the disease vary widely. The World Health Organization predicts that 40 million people will be infected by the year 2000, while other analysts put the number as high as 110 million by the turn of the century.

Although the disease remains on a small scale in Taiwan, predictions for the future are alarming. In 1992, James Chin, an epidemiology professor at UC-Berkeley and former chief researcher with the World Health Organization's Global AIDS Control Program, visited Taiwan to study the disease and offer suggestions for its control. Using methodology developed by the U.S.-based Center for Disease Control, he estimated that, if unreported carriers are included, 2,500 people are now infected with HIV. By the year 2000, he projected that the number would reach 25,000.

According to DOH records, 95 percent of the persons who have contracted HIV between 1984 and 1992 are men, and 73 percent are between 20 and 39. Homo­sexuals and bisexuals make up 41 percent, heterosexuals 30 percent, hemophiliacs 11 percent. Intravenous drug users 5 per­cent, and information on the remaining 13 percent is unavailable. While the disease was first concentrated in Taipei, cases have now been recorded in central and southern Taiwan.

Medical professionals are especially concerned about the rate of increase among heterosexuals. Between 1988 and 1992, the number of HIV cases among ho­mosexuals tripled, while the number of heterosexual cases increased by a factor often. "Homosexual infection is leveling off, and the homosexual community is only 5 or 10 percent of the population at most," says Twu Shiing-jer (涂醒哲), a physician specializing in AIDS at National Taiwan University Hospital. "The hetero­sexual 'market' is much greater. The sex industry is very big in Taiwan. If AIDS is introduced, the situation becomes very, very dangerous." As of the end of 1992, two local prostitutes had died of the dis­ease and twelve women had contracted HIV.

The biggest difficulty fac­ing those working to stop AIDS is that social pressures have made high-risk groups hard to reach. For example, the govern­ment's initial attempts, in 1985, to offer blood tests for homosexuals were largely unsuccessful. Activist Chi Chia-wei ex­plains that the government wasn't famil­iar with the perspective of Taiwan's gay community. "They thought they could simply offer their services and we'd all line up like we were buying tickets at the movie theater," Chi says. Considering that homosexuality is strictly taboo in Tai­wan, he says the doctors and officials were naive to think that gays would will­ingly come forward. "They came up with some pretty unreasonable ideas for serv­ing the homosexual community," he says.

After a month with no takers for the blood-testing program, Chi contacted the task force and offered to serve as a bridge to the homosexual community. He began spreading information on safer sex among local homosexuals and helping them to be tested anonymously—work that he con­tinues today. Individuals can get blood samples drawn at small clinics without giving their names. Chi then delivers the samples to National Taiwan University Hospital each week for testing, using a pseudonym to identify each vial. The hos­pital contacts him with the results, and Chi calls the person.

"When the results are positive, I con­tact the person myself as quickly as pos­sible and arrange a three-hour meeting," he explains. There, he counsels the pa­tient, giving information on the disease and advice on monitoring his or her health, working with doctors, and using various drugs. "If the person is already in very bad condition," Chi says, "we rec­ommend that he check in to a hospital."

But there are many social subgroups that are either not receiving the informa­tion needed to protect themselves or are not taking the warnings to heart. Hsu Hsu­-mei (許須美), deputy-director of the Bu­reau of Communicable Disease Control for the DOH, explains that while some av­enues of communication have been opened with homosexuals, it remains dif­ficult to reach prostitutes and patients with sexually transmitted diseases—the two groups with the greatest potential to spread AIDS. While Taiwan's two hundred or so licensed prostitutes receive blood tests every two weeks, unlicensed prosti­tutes—numbering approximately 200,000 in Taipei alone, according to one social worker—do not. Since they are working illegally, they are very difficult to reach without a trusted go—between. Says Hsu, "Peer education is very important." Cur­rently, she and other DOH officials are try­ing to reach these women by cooperating with non-governmental organizations.

Those at highest risk are persons with a history of other sexually transmitted dis­eases. The rate among this group is about ten times that of the general population. Hsu is asking private VD clinics to help educate their clients about HIV and to of­fer AIDS testing by sending blood samples to the larger hospitals.

In 1986, the DOH established a budget specifically for AIDS prevention. Since then, the department has developed public serv­ice announcements for TV, radio, and newspapers, and has published thousands of copies of informational brochures on un­derstanding the disease and how to practice safer sex. In 1991, the DOH formed a six­-member AIDS task force to focus on public education, medical treatment, training for medical professionals, and monitoring the growth of the disease. It funded several thirty-second animated television public service announcements in conjunction with World Aids Day (December 1), and this spring, the task force drew up a NT$773 million (US$31 million) four-year plan tar­geting people with other sexually transmit­ted diseases. In addition, the DOH and the Ministry of Education jointly created an anti-AIDS, anti-drugs, and anti-smoking campaign which ran in fifty junior high schools during the 1992-93 school year. Other AIDS education programs have run in primary schools, high schools, and colleges.

The task force's primary focus is on monitoring the disease to determine which social groups should be targeted for educational programs. "Creating a more effective surveillance system should be our first target," says Shih Yaw-tang (石曜堂), deputy director-general of the DOH. "Then we can define the high-risk groups and create more effective educa­tion programs." But this will be no easy task. Currently, men serving their manda­tory two-year military service are the only group regularly tested for AIDS.

Patients, social workers, and officials agree that the medical facilities and financial coverage available to people with AIDS are top quality. Islandwide, twelve hospitals are equipped to handle AIDS patients. The government covers all related medical expenses, including drug treat­ments, a policy that cost an average of NT$210,000 (US$8,400) per patient in 1992. In fact, in the United States, treat­ment using AZT—the primary drug used to slow the effects of the disease—is only covered for patients who have developed AIDS. In Taiwan, the treatment is available to any HIV carrier.

But many physicians find Taiwan sadly lacking in the psychological serv­ices for these patients. "The big difficulty comes from the shame associated with the disease," says Wu Hsiu-chen (吳秀禎), a social worker at Veterans General Hospi­tal. She explains that many carriers do not have the normal channels of emotional support because they fear rejection. "AIDS patients can't easily open up and talk about their problems," she says. "They don't want to talk to friends or relatives." Wu has worked with twelve AIDS patients and says they are some of her most chal­lenging cases. "It's not easy to resolve these problems," she says. "Because of the nature of the illness, they usually won't talk about their worries. Sometimes they get defensive."

The biggest problem, says one 24-year-old HIV carrier in Taipei, is depres­sion and anxiety brought on by the social stigma attached to the disease. The Bible­-school student, who asked not to be named, says that carriers often feel ostra­cized by society. He says many also suf­fer from "not understanding the disease, thinking you'll die right away," and "the fear of being rejected by family mem­bers." To fight his own depression, he has joined several support groups and volun­teer programs working with AIDS patients and fellow carriers. Currently, several churches offer self-help groups, and Na­tional Taiwan University Hospital has started a support group and volunteer net­ work. The main benefit of these groups, he says, is "building friendships" and "sharing the pain and frustration with other people in the same situation."

Activist Chi Chia-wei explains that the first months after a person learns that he or she has HIV or AIDS is the most criti­cal period. When Chi must tell people that they have tested positive, he says, "I ask that the person keep in close touch with me over the following two months. An optimist with HIV might consider commit­ting suicide three times; a pessimist will think about suicide maybe three hundred times. In these two months I ask them to call me whenever they need to."

"In my experience, patients usually have a difficult period for more than half a year," says physician Twu Shiing-jer of Na­tional Taiwan University Hospital. "Usually, they become better and happier after a year to one-and-a-half years of counseling. We want to make that time period shorter." To do so, he has initiated several support groups and has attracted about one hundred trained volunteers interested in public edu­cation or in counseling carriers.

Funding for the hospital's support groups has been difficult to find. For 1992, the groups raised NT$150,000 (US$6,000), mainly through small, indi­vidual donations. "It is still difficult for people to sponsor AIDS programs," Twu says. "They will sponsor pediatric care, the Heart Association, or cancer research—but AIDS? Some people still think that AIDS patients deserve the disease; that it is God's punishment. It is not so easy for us to raise money."

Chi Chia-wei says public perceptions of the disease have improved a bit over the past five years. He should know; he has made educating the public about AIDS a full-time job. Chi spends many hours each week raising money for AIDS- mostly by asking for donations on the street. The sight of the tall, gangly young man handing out condoms and collecting loose change from passers-by has become a familiar one at the Taipei Railway Sta­tion and other crowded public spots around town. He raises about NT$5,000 most days, and uses the money for educa­tional campaigns, printing brochures on safer sex, or directly for patients in finan­cial need. Currently, he is raising funds for a home for AIDS patients.

While people are more familiar with the cause now than when he began his ef­forts seven years ago, he says the shame surrounding the disease is still strong. He operates a kind of 24-hour information hotline out of his apartment, but explains that he gets nearly all of his calls during the wee hours of the night while a caller's family members are asleep.

Although HIV carriers are protected against discrimination by law, legal rights often have little relevance to actual prac­tice, says Twu Shiing-jer. Instances of di­rect and indirect discrimination abound. He tells of one HlV-positive student from National Taiwan University who was forced to leave school, and of a teacher who was forced to retire. Patients will of­ten react to potential discrimination even before anything happens; for example, some will leave a job if they believe that coworkers or employers suspect they have the disease.

Perhaps the biggest problem facing AIDS patients is that many medical profes­sionals are unwilling to work with them. Matthew Wong (王永衡), a physician in the infectious disease ward of Veterans General Hospital in Taipei tells of a recent case in which an expectant mother was turned away from a hospital after being falsely diagnosed as HlV positive. He ex­plains that hospitals are also pressured by administrators who fear that accepting AIDS cases will drive other patients away. "The problem is the attitude, not really the level of education or knowledge," says Shih Yaw-tang of the DOH. He explains that the DOH and hospitals have tried to combat misperceptions and fears through educational programs.

Veterans General Hospital began holding AIDS training sessions for all nurses and doctors in 1992, but the staff at the infectious disease ward has been dis­appointed with the results. "We show data emphasizing that HIV infection and AIDS are much the same as Hepatitis A and B­—so there is no reason to panic," Matthew Wong explains. But when the hospital did a follow-up survey after the sessions, the results showed that attitudes had changed little. Says Wong, "Everyone knows the facts, but they still panic."

In addition to fearing contact with the fatal disease, many hospital staff are strongly discouraged from working with AIDS patients by their families and friends, Twu Shiing-jer says. "Physicians and nurses need to be educated, but that's not enough—we must educate the public," Twu says. He points out that while doc­tors working with other fatal diseases such as cancer are considered noble and brave, those working with AIDS are sometimes deemed strange. "Even though I know I am safe, it has taken me a lot of energy to explain to my family and my friends why I join this effort," he says. "Because of this situation, nobody wants to go into this field."

To encourage more hospitals to open AIDS wards, Twu is asking nurses willing to work with such patients to be listed in a "nurses bank" that hospitals can draw upon as needed. "That way," Twu says, "when any hospital considers creating an AIDS ward, we can show them that we al­ready have some nurses. Then the admin­istration can't use the excuse that no nurses will work in the ward." Twu ex­pects to sign up fifty nurses this year.

Su Yiet-ling (蘇逸玲), head nurse at Veterans General Hospital, says she has seen the effects of discrimination on AIDS patients firsthand, in the anxious faces of HlV carriers arriving at the hospital. "One patient recently asked me, 'Are you will­ing to care for me? Can you accept an HlV carrier?'" she says. "The patients see us first. They look at our faces, and if we smile, if we accept them, they are visibly relieved." Su strives to make sure all the nurses on her staff treat HIV carriers as they would any other patient with an in­fectious disease. The hospital has served thirty-seven carriers to date and has a reputation among patients as the best place to receive care. If one of her nurses is afraid, Su says, "we teach her how to solve her problem."

She stresses that the nurses in this high-stress ward need extra emotional and professional support. "We take care of AIDS patients, but who takes care of the nurses?" Su asks. "The administration must support us. Our families must sup­ port us. We must support each other."

The DOH is also considering ways to support nurses and other medical profes­sionals who work with AIDS patients. "I think we should create incentives for pro­fessionals engaged in AIDS-control pro­grams," says Shih Yaw-tang. The department is also trying to secure special health insurance for those in the field.

Is Taiwan doing enough to fight the spread of AIDS? Some physicians feel the pace is too slow. Twu Shiing-jer charges that the government budget for re­search on the disease—NT$9.9 million (US$395,000) for FY 1993—is "very lit­tle, and is ignorant." He points out that in the United States, AIDS research receives more funding than any other disease, about 10 percent of the budget for the Na­tionaI Institute of Health, plus additional money raised privately. He believes that AIDS is overlooked by the ROC govern­ment in favor of other priorities such as transportation projects. "The Executive Yuan doesn't realize that AIDS is now an epidemic," Twu says. "If we don't put money into research and prevention now, it will cost maybe ten to one hundred times the amount in three years."

Others hold a more confident view, given the current low numbers of AIDS cases. "I am optimistic that this will not be a very big issue for Taiwan," says Shih Yaw-tang of the DOH. "We should put more effort into it, but it is not a very se­rious problem. There is a potential risk, but I don't think we will ever have a prob­lem like in the United States or Thailand. No. Never. We have that confidence." But the message heard again and again from people working on AIDS prevention is that the more work done now, while the dis­ease is on a relatively small scale, the more chance Taiwan has of avoiding the fate that has befallen other regions of the world.