“Stigma and discrimination remain key issues for people living with HIV”

Sunday 01 December 2019

Islanders living with HIV have said they are still coming up against myths and prejudices more than 30 years on from the first cases in the Channel Islands.

Only 58% of islanders living with HIV had told a family member of their condition, according to a survey carried out by Liberate ahead of World AIDS Day today (1 December).

The equality and diversity charity took on the responsibility of continuing the work of the Jersey AIDS Relief Group (JARG), a charity launched at the height of the AIDS crisis in August 1987, to provide financial support, counselling and emotional support not only for those persons suffering from HIV/AIDS, but also for their families and friends. 

Last year, on World AIDS Day, Liberate launched a survey of Channel Islanders to discover whether the islands’ need for support around HIV matched that of the UK. The survey, which received 205 responses, shows that progress has been made on some fronts, but that little has changed in other areas since the 1980s.

The Terrence Higgins Trust (THT), the UK's leading HIV and sexual health charity, estimated they are 102 and 65 people living with HIV in Jersey and in Guernsey respectively. 14 of the survey respondents were living with HIV.

Pictured: A majority (62%) of the respondents said they felt a stigma still exists in the islands around being HIV positive.

A majority (62%) of the respondents said they felt a stigma still exists in the islands around being HIV positive, with an additional 25% saying they felt there is “some” stigma. 

In addition, 45% of respondents said they had experienced some form of bullying, harassment, intimidation, discrimination because of their HIV status. 

“There are some very poor attitudes towards HIV and it is not treated in a similar way to other diseases,” one respondent said.  

“I have sat at professionals meetings and heard myths quoted about AIDS with the intention to affect decisions, fortunately strong voices shot them down,” another said. “Professionals should not be reacting to myths and this is why we need to educate them as well as the public.”

Pictured: Stigma and discrimination make people afraid to seek HIV information, services and modalities. 

According to the Joint United Nations Programme on HIV/AIDS, stigma and discrimination are among the “foremost barriers to HIV prevention, treatment, care and support.”

Stigma and discrimination make people afraid to seek HIV information, services and modalities to reduce their risk of infection and to adopt safer behaviours lest these actions raise suspicion about their HIV status. 

“Research has also shown that fear of stigma and discrimination, which can also be linked to fear of violence, discourages people living with HIV from disclosing their status even to family members and sexual partners and undermines their ability and willingness to access and adhere to treatment,” UNAIDS added. 

Pictured: Liberate is recommending the government work on developing an evidence-based strategy for reducing HIV stigma.

Liberate has therefore recommended that the government works with charities and people living with HIV in the Channel Islands to develop an evidence-based strategy for reducing HIV stigma that includes a range of approaches to tackle the many different factors contributing to stigma. 

“Educating people would reduce stigma,” one respondent said. Understanding the difference between HIV and AIDS important. Stop people referring to it as AIDS but refer to it as HIV will help the fight against stigma.”  

“As a charity, the priority for us is clear. We need to do more to reduce stigma in the Islands and that starts with education – whether that is in the form of new government information campaigns, or workshops that give people the facts about HIV, or making it part of sex education lessons in schools,” Vic Tanner Davy, CEO Liberate, said.

“When someone comes out as living with HIV it should result in support for that person; the fear remains that it will result in rejection by friends, family and colleagues.”

Pictured: None of the respondents had told someone they work closely with, the HR department at work, or acquaintance(s) at work.

The survey also showed that just over half (58%) of respondents living with HIV had told their family members about their HIV status, while nearly all of them (92%) had told their doctor or GP. 

Nobody had told someone they work closely with, the HR department at work, or acquaintance(s) at work.

Liberate said this supports “the difficultly that those with a HIV+ diagnosis face in speaking about it. Although it can be hard to break the news of a serious health condition, such as cancer, to those closest to you, few conditions carry the added burden at the time of diagnosis of the stigma associated with HIV.”

Additional work highlighted by the report includes the need to combat the spread of HIV by encouraging people to get tested and know their status, and by making PrEP (a drug that can stop HIV infections from being passed on) available on the health service in both Bailiwicks. 

They will have the support of the Terrence Higgins Trust for their work, which will commence in 2020.

“We fully support work in the Channel Islands to update people’s knowledge of HIV,” Dominic Edwardes, Executive Director of Communications at Terrence Higgins Trust, said.

“We’ve made huge medical progress in the fight against HIV that means someone diagnosed early and accessing treatment has the same life expectancy as anyone else. But public perceptions haven’t kept up with the pace and stigma and discrimination remain key issues for people living with HIV. We’re keen to work with Liberate to help shape the Channel Island’s HIV response, including through stigma training and increasing access to HIV testing.”