Stigma is a barrier to HIV disclosure, researcher says

Apr 1, 2013 | News

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CAAT researcher Henry Luyombya  says stigma can be challenged through education and encouraging people living with HIV to get involved. COURTESY HENRY LUYOMBYA

CAAT researcher Henry Luyombya says stigma can be challenged through education and encouraging people living with HIV to get involved. COURTESY HENRY LUYOMBYA

By Shazia Islam

Fear of stigma is the primary reason why people living with HIV do not disclose their status, a frontline worker said in an interview with Humber News on Monday.

Henry Luyombya, HIV researcher and member of the Committee for Accessible AIDS Treatment, told Humber News that people need to be better educated about HIV in order to challenge the stereotypes.

“People are misinformed about the facts on HIV transmission and how to treat HIV,” Luyombya said.

CAAT is a non-profit community agency that provides education and training, and improves service access for newcomers, immigrants, and non-status people living with HIV/AIDS.

Luyombya said usually the most marginalized communities, including racialized people, face the brunt of stigma – which is akin to rejection and can lead to discrimination.

“You don’t know if you’re going to be fired from your job, or you might lose your scholarship, or might be kicked out of school,” he said. “Or even lose your social networks that you depend on.”

Stigma against people living with HIV/AIDS, also known as PHAs, is based on moralistic assumptions about people’s sexual and lifestyle choices, he said.

Luyombya stressed the importance of changing the public perception that HIV is a disease that only certain minority populations contract.

“We are all affected by HIV,” he said.

Luyombya agrees with the need for a set of guidelines to help people living with HIV/AIDS disclose their status.

The Ontario HIV Treatment Network published a report in March 2013 outlining key strategies for HIV disclosure.

The report said it was important to “carefully decide who to disclose to” and to self-educate about HIV/AIDS by attending community workshops or training programs, such as those offered by CAAT.

“When individuals living with HIV are given skills to advocate for themselves, then they work together as a community to bring things forward,” said Luyombya. “This leads to improved health and improved skills-building.”

Luyombya added that training and sharing of accurate information about HIV create a sense of empowerment in the PHA community, which can have a significant impact on reducing stigma elsewhere.

“We address stigma through building community coalitions with PHAs, and media, social justice networks, and faith leaders,” he said.

But Luyombya echoed the report’s recommendations and said choosing the right people to disclose to and when to do so were important considerations.

He said it was better to reveal to “particular groups that may be trained with the necessary information to support someone in the disclosure process.”

Although HIV disclosure is encouraged from a public health perspective because it supports prevention work, PHAs could face future repercussions.

“You don’t know five or 10 years from now, when you’re applying for a job, or when you’re running for office, if it will be used against you,” said Luyombya.

Only through “mobilizing community leaders” and “addressing HIV-phobia” can stigma be effectively challenged, he said.

According to the Public Health Agency of Canada, in 2011, there were an estimated 71,300 people living with HIV/AIDS in Canada.