Above: Making a point about PREP at the last Pride march in 2017. Photo courtesy of Tonie Walsh.
New HIV diagnoses are being recorded at one every 18 hours – a record high. The LGBT community has been particularly impacted. Jim Gallagher finds that Ireland’s response to the upsurge in new diagnoses has been piecemeal, patchy and ill-informed.
There has been no coordinated national response to the surge in new HIV diagnoses until the National Sexual Health Strategy was launched recently. There is no comprehensive and accurate data on HIV in Ireland. Information on patterns, incidence and prevalence in different populations is standard elsewhere, and necessary for making informed policy decisions. Without the correct data, knowledge of the situation is impaired, and it is difficult for a more holistic approach to emerge: one which would include targeted preventative care and education, along with better testing.
All this concerns HIV Ireland, formerly the Dublin-based Alliance, who have worked to improve conditions for people living with HIV since 1987. Their Director, Niall Mulligan says “the ongoing upward trend in new diagnoses within the MSM (men who have sex with men) community is a crisis.” To address it, he wants “greater outreach with the community and increased access to free testing”. He says the lack of data on the crisis hinders an appropriate response, and “would help in arguments against regressive legislation (criminalising the purchase of sex being a case in point).”
The Dean Street clinic, an NHS Sexual health programme, have noted a 42% reduction in new infections at their large London based clinic since introducing PrEP (Pre-exposure prophylaxis), a pill that keeps HIV negative people from becoming infected. The pill, supported by WHO (World Health Organization), provides an alternative method of protection for those who may not always use condoms. In Ireland, however, there is no access to PrEP through the public health system. While some seek off-brand versions and PrEP is bought online, many have had medications seized by customs. The Irish Times reported in July that since January “eight shipments, totalling 630 tablets have been seized”.
Andrew and Elena, of ACT UP (AIDS Coalition to Unleash Power), connect the ongoing struggle right back to ACT UP’s founding in New York in 1987. Central to their understanding of the situation is that “HIV is a political crisis” and that they must “make political demands on the state and government to do more.” Sexual health services for gay and bisexual men have seen their budgets cut in recent years. “This should outrage the LGBT community. We should be demanding accountability from politicians and public health officials, as well as the leaders in our community who failed to make this part of the community’s political agenda.”
While there is new and effective treatment available, Andrew thinks the Irish state shows little commitment “to effective education and prevention, and almost no support services available for people living with HIV here.” Furthermore, HIV remains a deeply stigmatised disease despite the dramatic improvement in our ability to deal with it.
Despite the dramatic increase in new HIV diagnoses among the LGBT community Andrew highlights budget cuts for services and a lack of interest or engagement in continuing with programmes which had proven to be a success.
Andrew doesn’t solely find fault with the government however, for him this situation is “enabled by a community that never raises its voice to protest, never stands up to demand an effective and serious response to the HIV crisis”.
Elena says that “Ireland has one of the lowest rates of STI testing in Europe, with only 9.4% of men and 8.3% of women reporting ever having had an STI test, according to the 2006 Irish Study of Sexual Health and Relationships.”
In Dublin there are three locations offering free weekly walk-in STI clinics, GUIDE clinic, Beaumount Hospital and Gay Men’s Health Service on Baggot Street. According to Elena, “People regularly report being turned away from clinics because there are too few spaces available. So you have inconvenient times and locations, general lack of rapid HIV testing, long waiting times, along with uncomfortable waiting room environments—these are all factors that have been shown to be barriers to testing, particularly for young people.”
“By comparison, Bristol—a city with roughly 100,000 fewer residents—has one dedicated sexual health centre which operates walk-in clinics from 9am to 4pm six days a week. Additional community clinics operate in 7 city wide locations and there are 9 other clinics specially dedicated to the provision of sexual health services to young people. Clinic opening times are varied with some operating until 8.30 at night.”
Elena draws attention to the 2010 Irish Contraception and Crisis Pregnancy Study which found that “although 60% of Irish adults had received sex education, this was focused mainly around the biological mechanics of heterosexual intercourse. Only about half of 26-35 year olds had received information on sexually transmitted infections and “safe sex” and less than a third had received information about homosexuality.”
She continues, “A text-book produced by people with links to pro-life group Youth Defence was being used in many of the country’s top schools, including Dublin’s prestigious Blackrock College. This book makes no mention of gay relationships, casts doubt on the effectiveness of condoms and advocates exclusively for an abstinence-based approach to avoiding HIV, STIs and unplanned pregnancy. When this is the standard of health education being provided to young people, it is little wonder people are ignorant, often confused and ill-informed.”
Elena emphasises the need to raise awareness of the reality of living with HIV today, the fact that “life expectancy for a person with HIV is now the same as any other adult. A person on antiretroviral medication is incapable of transmitting the virus to another person when they have reached the treatment goal of an undetectable viral load. Women with HIV can and are having HIV negative children.” This is significant progress and can surely change how people living with HIV are perceived and treated by others in our society.
Elena is currently researching the impact of stigma on people living with HIV for her PhD and while noting that there is no silver bullet, draws attention to benefits of “contact with people living with HIV” as “one of the most powerful ways to challenge stigma in individuals.”
While the medical consequences of HIV/AIDS are totally different today than in the 80s, there still remain clouds of shame and fear overhead. Tonie Walsh, well known LGBT activist, has called for a memorial to those who have died from HIV/AIDS as a good way to combat stigma.
In his view, “we need to be more assertive in rolling out sexual health strategies.” We should see “the Department of Health proactively initiating an information campaign on PEP (Post-exposure prophylaxis) and PrEP for GPs, we should have in every hospital around the country a clinic for testing and providing information.” Walsh knows all too well that some of the taboo with STI screening is caught up with religious morality and asserts that “we need to change, to tackle it in the school system and with an education strategy for GPs.” Something which can’t be left to specialist groups but rather “needs to happen at the centre of Government.”
Tonie recalls how Gay Health Action (GHA) was the first group to take it upon themselves to address HIV in Ireland in the mid 80’s.
“In 1985 were the first cases of people dying. It five years for the government to talk about it in the Daíl. That is shocking, it totally illustrates the disconnect of the legislature.” Gay Health Action felt “obliged to roll out information on protecting yourself and what the disease was” to a “worried and bewildered population.”
Initially the Department of Health gave a small amount of money for the first information leaflet to be printed, which went very quickly. “When it was to be reprinted the Attorney General at the time advised the Department of Health it would be ‘inappropriate’ to fund a leaflet which was tantamount to encouraging criminal activity.” This excuse was to be used again and again by those in officialdom and civic society to justify their inaction.
“RTE used it in 1987 when they refused to broadcast an advertisement for Out magazine, they couldn’t be seen to be encouraging criminal activity. George Birmingham (FG) the Minister for Youth used it in 1985. He was invited to the 2nd International Lesbian & Gay Youth Conference, (a precursor to International Gay & Lesbian Youth Organisation), but Birmingham wouldn’t participate.” Future funding was done by the gay community. “We used our own resources. There was the pitiful sight of us going around bars with buckets in 1985 to fund” the GHA leaflet. Indeed it was 1987 “before Ireland had a dedicated ward, it was in James’ Hospital. It was also 1987 when Fiona Mulcahy set up the GUIDE clinic for HIV and STIs.”
That year “we were so angry at the Church’s attitude to condoms, we held a condom picket outside the Vatican embassy. We weren’t selling them but we probably could’ve been arrested. We blew them up, put them on the gates. We had signs saying “Protect yourself from the Church – wear a rubber!” Walsh sees “extraordinary parallels” between then and today. Looking at attitudes to rubbers then, “it’s not too much of a stretch to compare it to the way we’re stumbling around PrEP. We knew then they were the most effective way to protect against HIV. Now we have studies from the US showing PrEP being very effective in preventing infection.”
Though like Niall of HIV Ireland and Andrew and Elena of ACT UP, Walsh notes that “we can’t just decide to make PrEP available for all, it has to be in the context of a better sexual health strategy.” The history of HIV/AIDS is also a history of turning despondence into resistance. Alternative Miss Ireland was one such example. While it was originally a pisstake, “poking fun at beauty norms and fashion and po-faced events, there was great panache and extraordinary transgressiveness then, there was great art.” In the early days it was in the legendary club Sides and the funding went to the Rape Crisis Centre, although with “lots of emigration, deaths and so on” it didn’t continue.
It returned in 1996 and launched itself into rabble rousing and fundraising for HIV/AIDS causes and charities. Walsh remembers “it was born out of us watch our friends get ill and die. The motto, which sums it all up, was “Glamour rooted in despair”. It was an attempt by those involved to “find a language to deal with AIDS”.
“You’re in you mid-twenties, can you imagine, and you’re visualising dancing towards the future with your friends only to find them die one after another, horrible and shabby deaths. The fear and bewilderment, who is going to be next, are you going to be next. It was a drip feed. I can only liken it to war, everything upended.”
However Walsh recalls “there was a dark and savage humour there.” One example was Panti’s opening monologue which “would be sexing up STIs, she would go through an STI hierarchy and the types of people who would have each one.”
The success of the event meant they had “about thirty to forty thousand pound to work with a year.” All run on volunteer labour with people coming out of the woodwork to make it happen with money going to kids charities and gay men’s charities and those like Cairde which was set up to help those with HIV. “At it’s heart it was conscious-raising, historicising horror. Implicit every year there was a group of people finding a way to wave goodbye to those who had died. It partly finished as we imagined we had grown up and the work was being done by the State and agencies that hadn’t existed when we started. Time has shown that is not necessarily the case.”