New campaign aims to erode stigma associated with HIV

Research conducted by GSK and ViiV Healthcare and launched today ahead of World AIDS Day today 1st December 2020, reveals that 56% of respondents in Ireland living with HIV are comfortable sharing their HIV status. This is a significantly higher proportion than North America (41%), the UK (37%), Europe* 28% or Russia (9%). The research, which is the second in the Positive Perspectives series, details the perceptions of 50 Irish people living with the condition.

The research forms part of a campaign supported by HIV Ireland and Sexual Health West which aims to raise awareness of HIV and highlight the key quality of life challenges and emerging needs of people in Ireland living with the condition.  The purpose of the campaign is to empower people living with HIV to take a more proactive approach to managing their condition by engaging with their health care practitioner (HCP), while also increasing public awareness and understanding of HIV to help mitigate stigma and discrimination associated with the condition.

The report, which found that almost three quarters (72%) of Irish female respondents are comfortable sharing their HIV status compared to a third of Irish men (33%), also highlighted reasons why many respondents choose not to share their HIV status including:

• Worried that they would be seen or treated differently (64%)
• Worried it might affect friendships (62%)
• Worried that they might lose their job (48%)

When asked about the overall impact that living with 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. With regards healthcare, a high proportion of respondents (74%), agreed that there is room for improving the way their HIV is managed medically – a view shared by most of the women surveyed (86%). Encouragingly, 66% of respondents feel comfortable discussing concerns about their emotional well-being with their health care provider.

Speakers participating in the webinar included; Dr Benjamin Young, Head of Global Medical Directors of ViiV Healthcare; Prof Clíona Ní Cheallaigh, Infectious Diseases & Internal Medicine Physician at St James’s Hospital, Dublin, Associate Professor in Clinical Medicine; as well as representatives from the HIV community.

Minister of State with responsibility for Public Health, Wellbeing and the National Drug Strategy, Mr Frank Feighan T.D, said: “World AIDS Day provides us with an opportunity to reflect on how far we have come in our response to HIV/AIDS and to re-evaluate what more we can do to improve prevention and support for those living with HIV. This research highlights that while we have made much progress, there is still work to be done to increase awareness and reduce stigma. This year’s theme for World AIDS Day of ‘Global Solidarity, Shared Responsibility’ is particularly fitting as the HIV community has faced the new challenge of the COVID-19 pandemic this year. I would like to recognise the efforts and partnership between health services, NGOs and community groups in facing this together and re-affirm the Government’s commitment to ending new HIV infections.”

Prof Clíona Ní Cheallaigh, Associate Professor in the Department of Clinical Medicine, TCD and a Consultant in Infectious Diseases and General Medicine in St James’s Hospital, Dublin, said: “HIV is a great success story – antiretroviral treatment (ART) means that people can expect to live long and health 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 (PLWHIV) 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. It’s really important that PLWHIV feel able to talk about issues affecting them with their HIV nurse, doctor or other healthcare staff. It’s also vital that healthcare staff working with PLWHIV are trained and able to address issues that may affect their health, including mental health, stigma and social issues.”

Dr Benjamin Young, Head of Global Medical Directors of ViiV Healthcare, said: “This World AIDS Day we pause to honor the journey of the HIV community and to reaffirm our commitment to leave no person living with HIV (PLHIV) behind. The importance of engaging community voices is a central principle in HIV care. The Positive Perspectives Study was a global survey about the lives and experiences of PLHIV. The study analysis reveals that while Irish participants were more comfortable sharing their HIV status than people living in other countries, stigma remains a problem; a significant proportion of PLHIV in Ireland still feel the need for secrecy around their condition. From a health systems perspective, a very large majority (74%) of participants believed that there is room for improving the way their HIV is managed. These findings tell us that there remains significant unmet needs and opportunities to improve the quality of life of PLHIV in Ireland.”

Liz Martin, an individual living with HIV, said: “I was diagnosed with HIV in 1991 when I was 24 years old. I was a single parent with four small children, living in the West of Ireland and totally isolated. I knew no one.  Hard to believe that’s almost 30 years ago. At the time, information about the condition was limited. There were no HIV clinics in Galway. Thankfully, things have changed, there’s more information and supports available to the HIV community now. I want to encourage others living with HIV to reach out and seek support, especially at this difficult time of increased social distancing. Please don’t feel alone, or that your voice doesn’t matter – it does. Speak to your doctor about how you’re feeling physically and emotionally, there’s nothing they haven’t heard before and they're there to help. And, if you’re comfortable, speak to your friends and family about your worries or concerns. We can only change the conversation around HIV through open and ongoing communication.”

Stephen O’Hare, CEO of HIV Ireland, said: “The findings from this research indicates a high degree of resilience and optimism among many PLHIV in Ireland. 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 PLHIV are prominent in decisions about care. We must acknowledge the validity of these experiences and redouble our efforts to tackle stigma and discrimination relating to HIV in all areas of society.”

Joe McDonagh, CEO of Sexual Health West, said: “The Positive Perspectives study results provide a valuable insight into the challenges people living with HIV in Ireland face. While there are many positives to take from the results, they highlight key areas where more work is needed to tackle stigma and to empower people to proactively manage their condition. Sexual Health West supports people living with HIV across the West of Ireland and we are aware that rural isolation can be a factor when deciding to share a positive HIV diagnosis. Additionally, in these tough times of COVID-19, it is essential that people have access to social support when they need it and we remind patients that the Sexual Health West support services team are there to help and support people across the region.”

For more information about HIV, visit HIV Ireland or Sexual Health West.