* Susan Paxton is a woman living with HIV and an advisor to the APN+.
AIDS-related discrimination is common throughout Asia. Many overseas immigrants lose employment when they test HIV-positive; women diagnosed positive during pregnancy are denied treatment and care and often face subsequent abuse from spouses and in-laws; children of positive parents are denied access to education.
The Asia Pacific Network of People Living with HIV (APN+) carried out the first regional documentation of AIDS-related discrimination in Asia in 2003. The project was peer-led and is the largest study designed and implemented by people living with HIV. The objectives of the research were:
HIV-positive people developed the 133-item questionnaire, based on eight dimensions of discrimination described in the Universal Declaration of Human Rights. In total, 46 positive data collectors were trained to carry out the research in India, Indonesia, the Philippines and Thailand. Countries were selected to participate based on the availability and commitment of HIV-positive activists and local support to carry out the project at the time of the study.
APN+ consulted with 82 key stakeholders - HIV-positive activists, lawyers, academics, ethicists, government officials, workers in non-governmental AIDS organizations and UNAIDS staff to develop the ethical protocol, which was approved by UNAIDS and ethics review committees in all collaborating countries: Pune University (India), Udayana University (Indonesia), HAIN (the Philippines) and Mahidol University (Thailand). The questionnaire, research protocol, informed consent and information sheets were translated into local languages. And legal, medical and social referral services were identified prior to data collection.
Data was collected from 753 positive people (Thailand 338, India 291, the Philippines 82, Indonesia 42). The respondents gave their oral informed consent to the interviews. They did not receive any monetary remuneration. Response rate to the questionnaire was over 95%.
Of the 753 respondents, 348 (46% of sample) were female, 394 (52%) male, 6 (1%) transgender and 5 (1%) sex not recorded; 50% of females and 8% of males were widowed; 10% of females and 46% of males were single; 38% of sample was married/de facto relationship.
The age range of respondents was from 16 to 60 years. (Mean 32.1 years, females 30.6 yrs; males 33.3 yrs; transgender 37.0 yrs).
Time since diagnosis was from a few months to 20 years (mean 4 years). Overall, 69% of respondents said they were diagnosed within the past 5 years.
| Reason for testing | Female (n = 348) | Male (n = 394) | Total (n = 753) |
|---|---|---|---|
| Employment | 5 | 12 | 8 |
| Pregnancy | 25 | 5 | 14 |
| HIV symptoms | 10 | 37 | 24 |
| Partner tested positive | 42 | 11 | 26 |
| Just wanted to know | 7 | 24 | 17 |
| Other | 11 | 11 | 11 |
Many violations of human rights happen within the context of HIV testing. Most people who have an HIV test are inadequately prepared for it and do not receive pre-test counseling. This is particularly so for pregnant women and people who test for employment reasons. Women are more likely than men to face coerced HIV testing (14% v 10%). Those who report coerced testing are significantly more likely than others to face subsequent AIDS-related discrimination. Only 52% of respondents surveyed said that they received post-test counseling.
The majority of discrimination occurs within the health sector. Over half of the sample (54%) experienced some form of discrimination within the health sector due to their HIV-positive status, including discrimination by health care worker (26%), refusal of treatment (15%), delay in provision of health care (17%).
Breaches of confidentiality by health-care workers are common. One in three respondents said somebody else was told of their HIV status without their consent. Almost half of all women, but barely one in five men said they were advised not to have children after diagnosis. In Thailand, 17% of women were coerced into an abortion after diagnosis; in India 10% of women were coerced into an abortion or sterilization.
Women are significantly most likely to bear the brunt of AIDS-related discrimination compared to men. Women were more than twice as likely as men to have been physically assaulted because of their status (7% v 2%). The most frequent form of discrimination is facing ridicule, insult or harassment. This happened to 31% of women and 20% of men.
Married women were significantly less likely than unmarried women to experience ridicule or harassment (22% v 36%). Respondents who reported testing because they "just wanted to know" their HIV status were least likely to report ridicule or harassment due to their HIV status (13% v 28%).
Of the one in ten people forced to change their place of residence because their HIV status became known, many moved residence more than once (up to nine times). Women were twice more likely than men to have changed their residence due to HIV (12% v 6%). In total, 6 % of the sample (30 women, 11 men, 1 transgender) were refused entry to or removed from a public establishment, such as a shop, bar or place of religious worship, due to their HIV status.
The sex of respondents was the strongest indicator of whether a person experienced HIV-related discrimination; women face more discrimination in the community than men do, despite the fact that the majority of women contract HIV from their spouse. Age and education level have no impact on the level of discrimination that people experience.
After diagnosis, 16% of the sample experienced discrimination from family members (India 20%; Thailand 10%) including exclusion from usual household activities - cooking, sharing food or eating implements, sleeping in the same room as others, engaging in family functions. Women were more likely to experience discrimination from family than men were (18% v 11%), often from in-laws. Women were also more likely than men to have lost financial support from their spouse (35% v 12%) or other family members (11% v 5%). In total, 18 respondents said their children were involuntarily taken away from them due to their HIV status. Respondents who reported coerced testing experienced significantly more discrimination in the family (27% v 13%).
One in five people reported some discrimination within a workplace setting. In total, 16 women and 48 men were tested for HIV in connection with employment; 23 women and 29 men (7% of total) lost their jobs because of their HIV status.
The Philippines cohort experienced the highest proportion of workplace discrimination: people lost their job (33%), their job description or duties changed (44%) or they lost prospects for promotion (21%).
This research highlights shortcomings within the public health sector, including testing that violates normal procedures, and the more severe discrimination that women face. If men choose, of their own volition, to be tested, they subsequently suffer less discrimination. The number of people coerced into testing or are tested without pre- or post-test counseling is disturbing, particularly in light of the current push in most countries to test all pregnant women for HIV. Women are increasingly coerced into testing during a vulnerable period of their lives and then refused treatment or abused. Breaches of confidentiality often have severe consequences such as extreme violations of people's personal security. HIV testing should be done only if and when a person is motivated to find out their HIV status.
Suitably trained HIV-positive people have an obvious role as public educators, particularly among health-care staff. Meeting HIV-positive people breaks down discrimination and significantly alters people's attitudes. We need to harness the unique expertise of HIV-positive people in addressing HIV and AIDS.
Based on this study the following recommendations are offered:
For further information, please contact: Shiba Phurailatpam, Regional Coordinator APN+, 170/71, 22nd floor, Ocean Tower, Sukhumvit 16, Ratchadapisek Road, Klongtoey Bangkok, 1011 0 THAILAND; ph (662) 259 1908-9; fax. (662) 259 1910; e-mail: shiba@apnplus.org or info@apnplus.org; www.apnplus.org
The APN+ report "AIDS discrimination in Asia" is available from: www. gnpplus.net/regions/files/AIDS-asia.pdf
APN+, the Asia Pacific Network of People Living With HIV/AIDS, is committed to improving the quality of life of PHAs and to overcoming their isolation in Asia and the Pacific by extending the Network into all countries in the region.