Over half of Irish people living with HIV comfortable sharing their positive status

Liz Martin is a member of Sexual Health West and a strong advocate for education. She’s written a book about her experience and has arranged educational visits to schools to teach students and their parents about HIV.

Over half (56%) of Irish people living with HIV are comfortable with sharing their positive status, a higher proportion than other countries, according to a new study.

In North America, only 41% of those with a positive HIV diagnosis felt comfortable sharing this, in the UK it was 37%, in Europe it was 28% and in Russia it was only 9%.

This research was conducted by GSK and ViiV Healthcare and was launched ahead of World Aids Day, which is tomorrow.

Almost three quarters (72%) of Irish female respondents were comfortable sharing their HIV status, however, only a third of Irish men felt the same way. 

The study also highlighted why many respondents choose not to share their status – 64% worried that they would be seen or treated differently and 62% were afraid it might affect their friendships.

Almost half worried they might lose their jobs. 

When asked about the overall impact HIV has had on their life, 58% of respondents from Ireland expressed feeling positive, markedly more than the European average of 22%. 

This figure rose significantly among women (72%) compared to just 38% of men. 

As regards healthcare, almost three quarters agreed there was room for improving the way their HIV is managed medically.

However, 66% of respondents felt comfortable discussing concerns about their emotional wellbeing with their healthcare provider.

Liz Martin, a member of Sexual Health West, was diagnosed with HIV in 1991 when she was just 24. She was a single parent with four small children, living in a small village in the west of Ireland.

Speaking to the Irish Examiner, she said she was totally alone and isolated. 

She is originally from Dublin and contracted HIV from her ex-partner, who was a drug user. She moved to Galway to escape the relationship and hoped to move on with her life. 

"When I was first diagnosed, there was no information or education. I asked the local GP for a HIV test, and the results took weeks to come back, I was ringing and ringing."

Minister @FrankFeighan launching the @GSK_IE @ViiVHC #WorldAIDSDay #PositivePerspectives webinar earlier today, supported by @HIVIreland and @sexualhealthwst.#WAD2020 #FastTrackCities #FastTrackDublin pic.twitter.com/xeiXI5GPaL

— HIV Ireland (@HIVIreland) November 30, 2020

She went up to the surgery and her GP informed her she was positive. He admitted he didn't know anything about HIV and she was the first positive person he had met. 

They agreed to work together to find out more about HIV. "It was a relationship built on trust, a fantastic doctor."

She also went to a hospital to get more information, and asked a professor in haematology what the likelihood of her getting AIDS was. 

"There was no HIV clinic at the time, no specialist area. He told me I was dying."

"It was like a train hit me, I didn't have anyone with me, I was alone."

Someone gave Liz a clip out of the paper about a HIV support group based in Galway city. She went, and found great support. "There was no judgement right from the start, people we so kind and down to earth."

However, the local community was not as understanding. "In the early 90s, it was quite stark and bleak." 

"I know what it's like to live in a community where people don't want to know you. People used to cross the street, and say they didn't want their children to play with my children."

Ms Martin started a community education project among the locals, first by visiting a local secondary school. She explained HIV to different classes, and took the Irish Aids memorial quilt to the school to show the students.

The students then went home and told their parents, and the Parents' Council then wanted to learn more. They also received a talk from Ms Martin.

"It really had such an impact. They wanted to hear the heartfelt stories."

Next, Ms Martin organised a weekend of events to raise awareness of HIV/Aids in the town. 

The local priest refused to advertise the event in the parish newsletter, telling her it "didn't concern" the parish.

The other locals found out and kept ringing the priest, telling him that it did concern the parish and it should be advertised. "They said it matters and concerns all of us, it's not just something that happens in America and Africa."

Eventually, he relented and put the ad in.

Liz Martin: 'There still is stigma and discrimination, that hasn't gone away, but it has gotten better.'

"There still is stigma and discrimination, that hasn't gone away, but it has gotten better," says Ms Martin.

She said years ago, HIV was a death sentence, but now it is a chronic illness that can be managed. 

I was told to make a will, to make arrangements for my children. The fear was huge.

"The only way forward was to stand up and help people understand what it's like to live with HIV.

"This year's theme for World Aids Day is resilience. I would encourage people with HIV to reach out, seek support, you're not alone and there is hope."

Prof Clíona Ní Cheallaigh, consultant in infectious diseases and general Medicine at St James’s Hospital, Dublin, said HIV was a great success story. "Antiretroviral treatment means that people can expect to live long and healthy lives. 

"People with undetectable viral loads can be reassured that they can’t transmit the virus – undetectable is untransmittable, U=U.

"It is wonderful to see that more than half of people living with HIV feel comfortable in sharing their HIV status, but it would be even better if everyone living with HIV felt safe from discrimination and able to talk about their HIV."

The theme for #WorldAIDSDay on 1st December is 'Global Solidarity, Shared Responsibility'. Will you GLOW RED for World AIDS Day and show your solidarity for people living with #HIV? Wear something RED and tag us with your pictures #GLOWRED4WAD #WAD2020 pic.twitter.com/bxSGZhaBXe

— HIV Ireland (@HIVIreland) November 30, 2020

Stephen O’Hare, CEO of HIV Ireland, said the findings from the new research indicated a high degree of resilience and optimism. 

"There remains, however, marked differences in reported experiences of living with HIV relating to gender and sexual orientation. 

"In order to build successfully on these findings, we must listen closely and ensure that the voices of people with HIV are prominent in decisions about care."