by Noel Donnellon

In the last year we’ve seen some remarkable developments in Ireland’s response to the HIV crisis.For World AIDS Day 2018, the leaders of several political parties, as well as the Taoiseach took HIV tests to promote testing and to challenge stigma — a stark change from the same day in 2016 which passed without official comment.

In June of this year, representatives from four Irish cities joined the Taoiseach and the Minister for Health to sign on to the Fast-Track Cities initiative, pledging to develop local partnerships to support HIV prevention efforts and to combat HIV-related stigma and discrimination. And on November 4, a red-letter day in terms of HIV prevention in Ireland, we saw the official start of the long-awaited national PrEP (pre-exposure prophylaxis) programme.

These steps forward are most welcome, with new HIV diagnoses continuing at record high levels. HIV is now recognised as a relevant and pressing issue for political leaders, and new resources (and funding) are finally being made available.

It will take some time, but with a combination prevention approach, joining condoms, PrEP, PEP (post-exposure prophylaxis), and the knowledge that effective treatment prevents sexual transmission of HIV, Ireland may finally begin to reduce these figures.

But with this emphasis on prevention, are we losing sight of the needs of people already living with HIV?

With effective treatment, people living with HIV can expect to enjoy a normal, healthy life. But HIV has an impact on wellbeing that goes beyond the obvious medical requirements. The focus with HIV tends to be on the scientific and the medical, but for people living with the virus, H and P need to come first: Human first, People first.

In 2017, HIV Ireland conducted a survey of people living with HIV which found that a majority feared being judged and treated differently if they told others about their status. Many reported low self-esteem, with about 17 percent reporting feeling suicidal in the previous year.

With a national PrEP programme up and running, we in ACT UP Dublin think it’s time to focus on people living with HIV, to ensure that their needs are not lost amidst the successes in prevention.

To help us better understand the experiences, needs and aspirations of the community, we organised Beyond Suppression on October 26 last at Outhouse, the LGBT+ community centre. This was a community forum for people living with HIV. We wanted to get a sense of what changes people wanted to see, and generate ideas about how to make them happen.

Many concerns and ideas emerged in the course of the facilitated discussion. Participants pointed to a desire for more social and psychological supports for people living with HIV, expressing great enthusiasm for expanding existing peer support opportunities and for developing new ones. They emphasised the need to address the wide range of distinct challenges faced by people in different parts of Ireland, different backgrounds and in different communities. Another key theme was challenging stigma by normalising HIV through greater public visibility of those living with it.

In general there was a recognition of the importance of people with HIV being involved in advocating for the community and in taking action to create positive changes. It is vital people living with HIV be actively involved in this, and that attention is focused on them.

For those living with HIV, life is and should be more than tablets and six monthly check ups.

It’s about living and living well.