An Open Forum

In 2018, Ireland recorded 530 new HIV diagnoses. More last year than any year during theheight of the epidemic. That worrying spike in numbers brought home the fact that we are still in the middle of a crisis.

With the recent draft report issued by the State health watchdog, HIQA (Health Information and Quality Authority), saying that PrEP (Pre-Exposure Prophylaxis) was not only safe and effective as a HIV prevention strategy, but also “cost effective”, it seems, however, as if the doors may be opening for a crucial HIV Prevention Programme in Ireland.

The timing of the draft report lines up nicely with the upcoming annual Gay Health Forum wherein speakers will stress that PrEP is a key tool to achieving a break in new HIV transmissions. Conversing with each of the keynote speakers for the event, a prevailing, frustrating and repeated point was that, even after all this time, stigma is still a huge hurdle which needs to be overcome.

Rusi Jaspal, Professor of Psychology and Sexual Health at De Montfort University, Leicester, told us about his research and subsequent findings.

“My research focuses on the social and psychological factors that could lead gay men in particular and other minority groups to engage in high-risk behaviours. I’m also interested in how we can enhance wellbeing among people living with HIV.

“We’re trying to do two things simultaneously; we’re trying to give people correct information about HIV and STIs so that they protect themselves, but we don’t want to forget the significant population of people who are living with the condition.

“We have really excellent treatment these days, but there are a lot of factors that can compromise wellbeing. Mental health is affected by the stigma of HIV and disclosure and managing some of the physical aspects of living with HIV. If you enhance wellbeing among people living with HIV they are more likely to engage with their treatment, they are more likely to remain undetectable, and to talk about their HIV status - these things can have a prevention function as well.”

Rusi explained why MSM were disproportionately more likely to become infected, “There are the biological reasons -unprotected anal sex is more risky because of the nature of the tissue in that area, the fact that the lining of the anus is thinner than, say, the vagina and the penis. It’s the prime way that HIV is transmitted.

“Then if you think about it epidemiologically - gay men are a small minority of people, so there’s a smaller circle in towns and cities of gay men having sex with one another. Gay men are having sex with a smaller group of people, so that makes it more likely that an infection can spread within a very small community.

“There are also behavioural reasons. What I found in my research is that gay men are much more likely to face what I would call psychological stresses. Such as - gay men are much more likely to have suffered sexual abuse as children, gay men living with HIV are even more likely to have experienced sexual abuse as a child. Another stress is experiencing homophobia, and that can happen across the life span. The life-long effect it can have on your confidence, wellbeing and self esteem is really quite profound. It’s one thing experiencing homophobia and thinking, ‘these people don’t know what they are talking about’ it’s another thing to internalise homophobia.

“The other is HIV stigma - gay men rightly or wrongly are associated with HIV, we are more affected by HIV than other groups. That’s led to a stigma around being gay because you might have HIV and it’s also led to gay men avoiding the possibility that they may have HIV, leading them to not talk about it very much.

“These stressors can lead to decreased confidence and self esteem, they don’t feel able to negotiate with partners. They might feel less connected to the gay community, which is a prime source of information for sexual health. All of those factors could transpire to create the ideal context for HIV transmission infection and STIs. It can lead to people having unprotected sex.”

Nathan Sparling, the Chief Executive of HIV Scotland is coming to the Forum to offer valuable insight on their journey to making PrEP available on the National Health Service.

“The campaign for PrEP started in about 2012, when it was first approved by the FDA as a preventative medicine. It was being talked about internationally at conferences and HIV Scotland always has a presence there. What’s different about PrEP is that it’s a medicine people take to prevent something rather than cure something. That was a challenge we faced in the HIV sector - what’s the regulatory framework we have for that? That was the role that HIV Scotland played initially - unpacking the regulatory process.

“We worked with key health people in the Government to establish the PrEP Short Life Working Group. It was their job to look at who would benefit from it, what a PrEP service would look like and how many people would it impact. The working group published a short report that said PrEP should be available on the NHS if it was deemed cost effective.

“The Scottish Medicines Consortium in April 2017 deemed that PrEP was cost effective at the branded drug price - that’s really important because subsequently, in about two months after implementation, the Scottish NHS procurement service procured generic PrEP. So we automatically reduced the price by around 90 percent. There was automatically a massive saving making it even more cost effective.

“I think the cost effectiveness will drive it through in Ireland because people think it’s a life style drug or it leads to people having more condomless sex, and these things aren’t a bad thing, but when you can prove it’s saving money then that’s the best argument.

“There’s also the personal savings as well, we have people now who talk about being liberated for the first time, not having the fear of HIV or the inevitability of HIV over their heads, which is one of the things that gay and bisexual men have feared since the 1980’s.”

Nathan spoke about the argument that PrEP usage leads to an increase in STI rates: “In order to get your PrEP you go for an STI test every three months, so we’re diagnosing STIs at a much earlier time, sometimes for the first time for someone that’s never been tested before, and therefore STIs in the community are being detected, cured and then not passed on. So while there will be an initial spike of STIs, we’re seeing statistics from Australia that shows once you’ve got people on a consistent PrEP programme who are regularly testing then that number reduces significantly.”

Bruce Richman, the Executive Director of Prevention Access Campaign’s U=U is coming to the Forum with what can be seen as a game-changer in the area of HIV prevention. U=U stands for Undetectable=Untransmittable.

Bruce spoke about his own moment of realisation of just what that statement meant. “I had a scare. It was 2012, I had sex with someone and thought that I’d put them at risk. I’d been living with HIV and that had been my biggest fear. So I went to my doctor and he told me it was impossible for me to pass it on. That somebody who has HIV who is on treatment and has an undetectable viral load cannot transmit HIV to sex partners.

“I had been at that point living with HIV for nine years and I was really afraid I would pass on HIV to someone I loved, so I didn’t allow myself to get close to someone because I felt toxic, because I felt dangerous, because I felt less than. This changed everything for me - I’m not a risk, I can be with someone and have no fear of transmitting to them.

“That’s what led me to founding the Prevention Access Campaign. I wanted to share the news with other people, because no HIV information site at that point was doing so."

Bruce continued, “The aim of the Prevention Access Campaign is to make sure that everyone living with HIV, their partners, providers, policy makers and the public know and understand that Undetectable=Untransmittable. That will be a massive reduction in HIV stigma, not just the way people look at those with HIV but the way people living with HIV feel about themselves, for their future, for love and relationships and conceiving children. We want to make sure that this very specific clear message gets out to the world.”

Bruce also responded to the issue of cost effectiveness being a major component in PrEP becoming available on the National Health Service. “What we usually appeal to is people’s interest in HIV prevention. This is a field that really devalues the lives of people living with HIV. Many policy makers don’t really care about those lives unfortunately, but they do care about HIV prevention, so we pitch this as a prevention method that is essential for ending the epidemic.”

Bruce highlighted the part Ireland has played in spreading the message of U=U: “ACT UP Dublin was the first activist organisation to join the campaign. They’ve been pushing this message, along with HIV Ireland and other individual advocates, since the very beginning.”

If some of the main stumbling blocks to reaching zero transmissions of HIV are a lack of education, information and stigma, there is no doubt that the Gay Health Forum will play an essential role in that fight.