Universal access to antiretroviral therapy has not eradicated HIV-related stigma in Tanzania

The roll-out of antiretroviral therapy may paradoxically increase stigma, reduce counselling and testing, and increase sexual risk-taking, according to the findings of a Tanzania-based study published in the online edition of the journal Sexually Transmitted Infections.

Campaigns for universal access to antiretroviral therapy have enabled wider access to treatment in resource-limited settings. Advocates hoped that this would reduce stigma by making HIV a long-term, manageable condition resulting into more HIV testing and changes in sexual behaviour.

Although HIV has become a long-term condition, available evidence suggests that the link between antiretroviral therapy roll-out, stigma and uptake of voluntary counselling and testing (VCT) is not as clear cut as initially anticipated. Whereas some studies from southern Africa indicate that treatment availability has not encouraged widespread testing because HIV-related stigma still persists, others suggest that treatment access has reduced stigma (Wolfe et al., 2008).

The current study (led by Maria Roura of the London School of Hygiene and Tropical Medicine) was done to investigate the impact of treatment availability on various forms of stigma and VCT, because the researchers noted that less research has been done to find out why stigma and low VCT uptake still persists despite increased access to treatment. It was conducted in Northern Tanzania in a locality with access to free antiretroviral therapy and VCT services.

The investigators used snowballing and purposive sampling (for geographic and demographic balance) to recruit participants. They used semi-structured interviews and group activities to elicit participants’ views.

The findings show that the antiretroviral therapy roll-out has had a mixed impact on HIV-related stigma and VCT uptake.

The investigators found a reduction in ‘‘burdens’’ stigma. People living with HIV/AIDS (PLHA) are no longer a burden to the community because they are less dependent on help with daily living activities. Treatment availability has made HIV a normal disease “just like malaria” and PLHA feel “like normal people”, the respondents said. This has increased VCT uptake and some PLHA have gone public about their status and are involved in testing campaigns, with remarkable success.

However, the researchers also found that treatment availability has not reduced “blame stigma” because HIV infection is blamed on personal lifestyle choices and behaviours such as alcoholism and sexual recklessness, which are viewed as “avoidable” and “shameful”. PLHA are accused of “negligence” and “irresponsibility” especially if they are known to be alcohol users. They are thought to be “deserving” punishment (HIV).

Some community leaders equated antiretroviral roll-out to increased HIV prevalence. They said PLHA looked “attractive” and “difficult to identify physically” because they got healthier as a result of treatment and were engaging in sexual relationships, thus “spreading the disease”. Where such participants thought PLHA had reduced sexual activities, they believed it was only because they are being “avoided by others”. Some of the community leaders even suggested that PLHA should be locked away in “isolation camps” or be made “impotent”.

The study further found that the drug side-effects were blamed for “aggressiveness” (mental health problems), “gluttony” and “greed” among PLHA, and economic and nutritional support offered to PLHA was questioned by some members of the community – leading to further stigma.

This evidence of widespread persistence of blame stigma is a huge barrier to VCT, noted the researchers.

Lastly, the investigators found that the availability of therapy has not removed collective stigma, where the whole community is in denial of HIV and believed in other causes of the AIDS epidemic such as witchcraft. These explanations of causality have sanctioned risky sexual behaviours and limited VCT uptake.

The researchers acknowledged that these findings may have been limited by the recruitment methods and reliance on self-reporting by PLHA.

The investigators concluded that the potential of making HIV “normal” through antiretroviral therapy roll-out provides an opportunity to use treatment as a prevention tool that could be lost if local communities were not mobilised to accept antiretroviral therapy.

They recommended information, education and communication to engage with local communities to overcome context-specific barriers.

Implications for practice

These findings demonstrate the potential to use treatment as a prevention tool in resource-limited settings because people get to see the benefits of testing and treatment and to live “normal lives” once again, providing a basis for positive prevention.

They also demonstrate the need for further HIV awareness education in similar settings to reduce the various myths and misconceptions about HIV, particularly targeting community leaders who have huge influence on their followers.

Lastly, communal denial due to cultural explanations for ill health calls for context-specific approaches to challenge cultural beliefs about illness because otherwise availability of treatment will not make a difference to HIV incidence in such settings.