HIV-positive people still fear disclosure backlash

Associate editor — news/health

Wednesday, December 04, 2019

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THIRTY-SIX years after the human immunodeficiency virus (HIV) was discovered, one of the biggest issues for people living with the condition is disclosing their status for fear of backlash.

According to Jamaica AIDS Support for Life (JASL) Executive Director Kandasi Levermore, who was speaking with the Jamaica Observer ahead of the December 1 observance of World AIDS Day, disclosure is a “huge issue” for many of the organisation's clients.

“The major reason is really the stigma and discrimination — it forces people to not want to disclose because they don't anticipate that if they disclose they will be treated the same, or that they'll be supported,” she shared.

JASL, which was founded in 1991 by a group of people who wanted to support their friend who had been diagnosed with the virus, currently has more than 730 HIV-positive clients.

The non-governmental organisation focuses on key groups of people who are particularly vulnerable and who are affected by HIV and AIDS.

“So we always try to encourage [our clients]. When we say disclosure, people do not have to stand up in front of the Observer to say, 'I am HIV-positive', but persons must feel comfortable enough to tell at least one person what is happening with them, and anticipate that that one person will not treat them differently.

“Because of that fear of not knowing how they'll be treated if they should share this information, people were on their own, and that, of course, would have fuelled a lot of the mental issues — the depression, the anxiety, the worry, all of that,” the JASL head said.

One 29-year-old, who has been living with HIV for three years, told the Observer that he has been heavily criticised by church people with whom he has shared his status.

“At the church dem or wherever mi guh, like if mi share with them say, 'Yes, mi kinda sick', they will be the ones criticising me, judging me,” he said.

According to the country's 2017 HIV/AIDS Knowledge, Attitude, Behaviour and Practices survey released earlier this year, accepting attitudes to people living with HIV/AIDS among respondents not only remained low but declined significantly in 2017 (11.6 per cent) versus 2012 (14.3 per cent).

“The main area of concern remains a willingness to purchase fresh vegetables from a vendor known to be HIV-positive,” the report said.

The young man living with HIV also told the Observer that he has disclosed his status to a few people, but not his family.

“I call my mother and I call my father, but I still don't share it,” he said in the recent interview. “My mother have [high blood] pressure, and to lose a mother, as mi lose [other family members] would be so hard, plus mi already a try fi keep my [blood] pressure in check.

“Mi cyaan share it with her because she can't manage it,” he explained. “She not really going to understand seh I am on treatment. [She] maybe [thinks] mi a guh dead and she now a go fret, and she lose some family [members] already and she a go lose me… mi nuh have the time fi explain to har, so mi just nuh bodda say it.”

Acknowledging the nagging problem, Levermore explained that a key component of JASL's programme is facilitating disclosures.

“As a part of our service delivery, where we have persons who are HIV-positive, we do partner notification with the client. So clients do ask for our assistance to help them tell, whether it's a family member, or a spouse, a partner, a child,” she said.

The JASL executive director explained that team members who are psychologists would help to facilitate the process.

“It helps because the person doesn't have to face the individual alone, but also because we are able, on the spot, to educate the individual — whomever it is that we are facilitating the disclosure with — and they get a better understanding of the disease, how it's transmitted, how people are at risk, and how they can support,” she said. “It really does help individuals.”

Stigma and discrimination are also issues in the wider Caribbean.

According to last Thursday's report published by the Joint United Nations Programme on HIV/AIDS (UNAIDS) on the region, entitled 'Communities at the Centre — The response to HIV in the Caribbean', little progress has been made in reducing misconceptions about HIV and the ensuing stigma and discrimination.

“Two-thirds (67 per cent) of people in Jamaica said they would not purchase vegetables from a vendor living with HIV. Such stigmatising attitudes also were high in Haiti (64 per cent), the Dominican Republic (49 per cent), Belize (32 per cent), and Guyana (29 per cent).

“Eighteen per cent of people surveyed in Belize — 54 per cent in Haiti — believed that children living with HIV should not be allowed to attend school with other children,” the UNAIDS report said.

UNAIDS said efforts are under way to combat stigma and discrimination in the region.

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