The Subtle Manifestation of HIV Marginalization

Taiwan is not the worst country in the world to have HIV/AIDS. Almost of all of the more than 30,000 HIV-positive patients’ medical bills are covered by the country’s public health insurance system and anti-discrimination laws are in place to protect their rights across society. However, there are signs the day-to-day experience of people living with HIV remains marred by fears that prejudice can emerge at any juncture.

Meet Chris, a 36-year-old diagnosed HIV-positive in 1999 after contracting the disease from unprotected sex. Seven years on and his barrel chest, square shoulders and the thick veins protruding from muscular forearms mask the fact he has a life-threatening illness.

Chris, while a little shy at first, is comfortable in his own skin. His friends and family have not treated him any differently since he contracted the disease, he told The News Lens. Being HIV-positive does not have a bearing on his job at a technology company, so he has not seen the need to tell his colleagues about the illness. For the same reason, in his dealings with health professionals for routine medical issues unrelated to the illness, he does not disclose that he has HIV.

But is there an underlying fear that stops Chris from being more open?

Chris is not sure. Having HIV simply does not impact most aspects of his day-to-day interactions with society. But his experience has made him wary of creating unnecessary trouble for himself.

He recounts visiting a medical center for stomach pain in 2014. He knew the ailment, which was not serious, was likely related to side effects of HIV medication and informed the clinic as such. As he waited and waited to be called for an ultrasound, he realized other patients were being seen ahead of him despite arriving at the clinic later. He asked why and was told it was because the equipment used on him would need three hours of sanitization following its use, so he would be seen last. He made a call to his regular physician, who promptly contacted the clinic and complained that the additional sanitization was not required given it was not an invasive procedure. Chris was seen immediately.

Waiting a few hours was never going to make headlines as a major violation of his rights as a patient – unlike the recent high-profile case in which a student who was expelled from a military university after he tested positive for HIV – but Chris was resolute the treatment was unfair. He raised the issue with Taipei-based Persons with HIV/AIDS Rights Advocacy Association of Taiwan (PRAA). The association was not totally surprised; it had recently heard a near-identical report from another HIV-positive person who went to the same clinic with a similar medical complaint, PRAA social worker Bryan Chang (張正學) says. PRAA contacted the clinic and uncovered that the incidents were not accidental; the process was required by its standard operating procedure. PRAA took the matter to the Taipei City Government’s Department of Health, which did take action to ensure that the clinic’s procedures were amended.

A happy ending? Not quite. For PRAA, the episode reflects its daily battle to change how Taiwanese view HIV/AIDS, person by person and organization by organization. The threat of discrimination, even on a minor level, appears to ensure a sort of submissive complicity on the part of HIV-patients. People know they should not be treated differently, Chang says, but one bad experience can steer them to avoid future conflict. Moreover, the path to change is arduous; PRAA needs to field a complaint and then take it up with the relative authorities. Even when it is successful in a case like Chris’s, there is little chance the change will be implemented wider than the particular organization or individual in question.

In an interview with The News Lens in late October, Huang Yen-Fang (黃彥芳) director of the Centers for Disease Control’s Division of Chronic Infectious Disease was at pains to point out the CDC spearheaded the case against the National Defense University for expelling an HIV-positive student in 2013 – perhaps suggesting the organization had risked some capital in pursuing the case against another government institution. The student tested HIV-positive in 2012. Upon learning about the student's condition, the university reportedly prohibited him from taking swimming classes and required that his food, plates and clothes be washed separately from those of other students. The school said it did not expel the student for being HIV-positive, but rather for his “disrespectful actions towards school.” In April, the High Court ruled against the CDC after it tried to have the student, known as Ah Li, reinstated. But it left the door open for the CDC to pursue the case under the HIV patients’ rights law, and the NDC was fined NT$1 million (US$32,000).

Still, Huang also acknowledged that more work is needed to tackle discrimination.

While PRAA believes Chris’s experience is common, from 2013 to 2015, there were only 23 reported human rights cases related to HIV discrimination in Taiwan, according to statistics from the CDC. Nine of those complaints were related to employment, six to medical issues, six to privacy and one each to a school and nursing home. Chris and PRAA’s Chang agree that notwithstanding the existence of legal protection, there remains a perception that Taiwanese companies could fire employees with HIV. Given the evidence of stigma against the HIV/AIDS community, the relatively low number of human rights cases reinforces PRAA’s view that most people with HIV do not want to court controversy, and even when the situation justifies it, they may not want to pursue cases via the courts or government agencies.

Chris says that living in Taipei and being part of the PRAA community means he now has greater access to the resources that makes life with HIV easier – he knows the “friendly” doctors and clinics to call on – but he also knows this is not the case for everyone.

Ultimately, the underlying discrimination against HIV/AIDS has a broader implication beyond the erosion of a patient’s rights: according to the CDC it means that people living with the disease may be unwilling to seek proper testing and treatment. This is considered a key factor in why the total number of new cases of HIV reported each year in Taiwan, which started to decrease about a decade ago following successful efforts to control the disease among injecting drug users, has crept higher since 2009.

Special acknowledgment to TNL staff writer Mo Tz-pin for the translating assistance.

Chris’s real name was not used for privacy reasons.

Editor: Olivia Yang