Number of new HIV cases recorded ‘concerning’, says President Higgins
President Michael D Higgins has said people with HIV in Ireland continue to face a stigma.
Speaking at a ceremony at Áras an Uachtaráin on World AIDS Day, Mr Higgins said it was a time to reflect on the right to equality and the right to services of those who had HIV and the discrimination and stigma they faced.
“It is troubling now to recall the moral and ethical atmosphere of Irish society in 1982, when the first two cases of AIDS were diagnosed. Those who suffered the most in the 1980s were those exposed not only to a prejudice born of misunderstanding of HIV and AIDS, but also to other forms of social oppression which were, and are, too often manifested in our society,” he said.
“At that time, contraceptives were only available through a medical prescription – as was said at the time, this was ‘an Irish solution to an Irish problem’. Our laws prohibited same-sex sexual relationships. My two predecessors in this Office, Mary McAleese and Mary Robinson, both played a significant role in the campaign – led with bravery by Senator David Norris – to overturn this discriminatory legislation,” he added.
“Our social policies were insufficient to a moment of crisis in Irish society, and the citizens of our cities and towns – particularly parts of Dublin City – paid a terrible price in the 1980s,” he said.
There were 508 new HIV diagnoses recorded by the HSE’s Health Protection Surveillance Centre in 2016, an increase of 35 per cent on 2011 figures.
“This is concerning, and we must continue to implement, support and promote, as a society, comprehensive prevention measures, including the kind of sexual health education and training which HIV Ireland have pioneered and continue to provide,” he said.
The findings of the National HIV Attitudes and Knowledge Survey and People Living with HIV Stigma Survey, carried out by HIV Ireland this year, reveal that there is some work to be done to improve knowledge about the transmission of HIV, particularly amongst younger people, he added.
“The surveys also revealed that for the 4,000 people estimated to be living knowingly with HIV in our country today there is still a degree of stigma – stigma arising from lack of knowledge, and sometimes, we must recognise, from pre-existing forms of prejudice based on a person’s sexuality, nationality, ethnicity, class or whether they are a drug user.
“This stigma takes a deep toll, whether experienced at the hands of friends, family, employers or strangers, takes a deep psychological toll on lives of people living with HIV,” he said.
Mr Higgins said the time before the development of anti-retroviral treatment – was a fearful time “and a time when so many loved ones were lost so suddenly, a time so often remembered with grief, hurt and anger.”
“We, as citizens of Ireland, do owe a duty to all those who lost their lives, a duty to remember and in that remembering, a duty to build a better future.
“Some during that time did act, and today is an occasion to recognise the courage, energy and activism of those campaigners, activism often conducted in the face of ignorance and sometimes hostility,” he said.
He welcomed the announcement that Pre-Exposure Prophylaxis (PrEP), an anti-HIV drug, will be available in Ireland from Monday. The addition of another measure to prevent HIV is an important step forward, he said.
PrEP is a once-daily medication that has been proven to reduce the risk of HIV infection, particularly among members of the gay community, by up to 90 per cent. A generic version of the medication will be available in pharmacies from next week. The cost of PrEP is not covered by the HSE, and currently it can be obtained privately with a doctor’s prescription at a cost of € 400 a month. The cost of the generic drug, made by Teva Pharmaceuticals, is expected to be under € 100 per month.
It was truly sobering, the president said, to recall that over 35 million people have died from AIDS-related illnesses since the beginning of the epidemic, and that over a million people died of such illnesses in 2016.
“At global level there is much which needs to be done, and approached with urgency.”
This article was first published on www.irishtimes.com on 1st December 2017.
Áras an Uachtaráin, 1 December 2017
A Aire Stáit,
A Theachtaí Dála,
A Cháirde Gael,
Tá áthas orm fáilte a fhearadh romhaibh chuig Áras an Uachtaráin.
It is a great pleasure for Sabina and I to welcome you all here today to Áras an Uachtaráin on World AIDS Day, and to have the opportunity to mark the 30th anniversary of HIV Ireland. It also is a great honour for us to be here with you, and to have the opportunity to recall all those years of dedication, perseverance and hard work – sometimes undertaken in very difficult, and indeed hostile, circumstances – which began over thirty years ago. It was indeed in difficult circumstances the work of campaigners involved in what was known as the Dublin Aids Alliance began.
May I take this opportunity to recognise the work, not only of HIV Ireland, but also of AIDS West in Galway City, ActUp Dublin, ACET Ireland, the All-Ireland Network of People Living with HIV, Positive Ireland, GOSHH in Limerick City, and the Sexual Health Centre in Cork City.
May I also welcome the announcement that Pre-Exposure Prophylaxis will be available in this country from Monday the 4th of December. The addition of another measure to prevent HIV is an important step forward.
Anniversaries are occasions not only to look forward, but to look back, and this occasion today is an opportunity to reflect: to reflect on loss – the loss of friends, of family members, of loved ones, of companions – that so many have endured; and to reflect too on the struggles in which so many have participated, the struggle for the recognition of rights long denied – the right to equality and the right to services – and the struggle against discrimination and stigma.
It is troubling now to recall the moral and ethical atmosphere of Irish society in 1982, when the first two cases of AIDS were diagnosed. Those who suffered the most in the 1980s were those exposed not only to a prejudice born of misunderstanding of HIV and AIDS, but also to other forms of social oppression which were, and are, too often manifested in our society.
At that time, contraceptives were only available through a medical prescription – as was said at the time, this was ‘an Irish solution to an Irish problem’. Our laws prohibited same-sex sexual relationships. My two predecessors in this Office, Mary McAleese and Mary Robinson, both played a significant role in the campaign – led with bravery by Senator David Norris – to overturn this discriminatory legislation.
It is perhaps indicative of those years – years in which Irish society yielded only most slowly and painfully to change – that the offending Act was amended all of five years after the European Court of Human Rights had found that the legislation was in contravention of the European Convention on Human Rights.
Our social policies were insufficient to a moment of crisis in Irish society, and the citizens of our cities and towns – particularly parts of Dublin City – paid a terrible price in the 1980s.
In those years, in terms of living up to its duties to its citizens, our society and State was anything but adequate or indeed republican in the best sense of that term.
I know that this time – a time before the development of anti-retroviral treatment – was a fearful time, a time when so many loved ones were lost so suddenly, a time so often remembered with grief, hurt and anger. It is deeply affecting to read the words of Tonie Walsh, who has spoken of the ‘hidden histories of how we lived, how we died, how some survived, yearn to be heard’.
Some of the most moving testaments of friendship that I have read are from this period and were written on both sides of the Atlantic.
We, as citizens of Ireland, do owe a duty to all those who lost their lives, a duty to remember and in that remembering, a duty to build a better future.
Some during that time did act, and today is an occasion to recognise the courage, energy and activism of those campaigners, activism often conducted in the face of ignorance and sometimes hostility.
It is also an occasion to acknowledge the great strides that have been made thanks to the efforts of those campaigners and of campaigning organisations like HIV Ireland and the work of health and social care professionals and volunteers. It is also, a time to look forward to all that which must still be achieved in our own society – and in countries around the world to realise the possibility of an AIDS-free generation and to ensure that those living with HIV may be able to live their lives without stigma, fear or discrimination.
It is truly sobering to recall that over 35 million people have died from AIDS-related illnesses since the beginning of the epidemic, and that over a million people died of such illnesses in 2016.
At global level there is much which needs to be done, and approached with urgency.
For example, in the plan of action that 193 countries have committed for the achievements of the Sustainable Development Goals, agreed in New York in September of 2015, there is a commitment to end the AIDS epidemic by the year 2030.
These Goals are ambitious, but they are realistic in their recognition of the scale of the response required to achieve them. Over 36.7 million people are living with HIV, and of these only 53% have access to treatment. The Goals recognise that nothing less than universal health coverage and access to quality health care, including universal access to sexual and reproductive health-care services, are necessary if there is to be a possibility of meeting them.
But if we are to achieve these Goals, both at home and abroad, it is not enough merely to make additional resources available, though this is a necessary condition. We are also required to create the consciousness for a more inclusive and more just societies.
Globally, new HIV infections have fallen – by 45% between 2000 and 2015 – but as we are all too well aware it has continued to increase amongst some of the most vulnerable groups in our societies. Only a response which eliminates inequalities based on gender, sexuality and race, raises the dignity of all people, and meets the demands of social justice, will be truly capable of eliminating HIV/AIDS and ensuring that those who live with HIV can live lives free of stigma, prejudice and discrimination.
It is remarkable that the effectiveness of treatment has improved to such an extent that HIV may be suppressed such that it is undetectable in a person’s body, which means that the virus cannot be transmitted. This illustrates the continuing importance of HIV testing, as those who do not know their HIV status cannot access treatment and have the greatest risk of transmitting HIV. The provision of community testing by organisations such as HIV Ireland and the Health Service Executive is to be truly commended and must be supported.
There were 508 new HIV diagnoses notified and recorded by the Health Protection Surveillance Centre of the Health Service Executive in 2016, an increase of 35% on 2011 figures.
This is concerning, and we must continue to implement, support and promote, as a society, comprehensive prevention measures, including the kind of sexual health education and training which HIV Ireland have pioneered and continue to provide.
The findings of the National HIV Attitudes and Knowledge Survey and People Living with HIV Stigma Survey, carried out by HIV Ireland in 2017, reveal that there is some work to be done to improve knowledge about the transmission of HIV, particularly amongst younger people.
The surveys also revealed that for the 4,000 people estimated to be living knowingly with HIV in our country today there is still a degree of stigma – stigma arising from lack of knowledge, and sometimes, we must recognise, from pre-existing forms of prejudice based on a person’s sexuality, nationality, ethnicity, class or whether they are a drug user.
This stigma takes a deep toll, whether experienced at the hands of friends, family, employers or strangers, takes a deep psychological toll on lives of people living with HIV.
So, as we meet here in Áras an Uachtaráin on World Aids Day may I then commend the work of all those organisations here today for raising awareness of HIV amongst the public, and of offering support and advocacy to those living with HIV. May I thank too all our health and social care professionals working in the Health Service Executive, in our hospitals and in other bodies for your dedication and your hard work.
May I also take this opportunity to salute the bravery of all those individuals who have taken a stand against discrimination.
As a people, we are more aware than ever, in this decade of centenaries, of the urgency to build, by our thoughts and deeds, a republic of equal citizens. This demands of all us a spirit of inclusion and a duty of kindness, of compassion, and above all, of solidarity and respect towards others, whether at home or abroad.
Through your work, your advocacy, your support services, and your campaigning you are making this republic of equals a reality. I would like to conclude by thanking you and re-iterating once again what an honour it is for us that you all could join us today.
May I thank Camille O’Sullivan, and Feargal Murray on piano, for providing our entertainment tonight – what a wonderful pleasure it is to hear and see one of our country’s greatest performing artists.
May I also thank our first aiders John Gold and Josephine McGlinchey from the Civil Defence, and all the staff here at Áras an Uachtaráin who have worked so hard to make this night a success.
This speech was first published on www.president.ie on 1st December 2017.
Press Release, 1st December 2017
HIV Ireland ‘welcomes’ availability of PrEP in Ireland
‘PrEP is a crucial HIV prevention medication that can significantly reduce new HIV infections, but it needs to be available to everyone, not just those people who can afford it’
The announcement by TEVA Pharmaceutical Company that it will be introducing Pre-Exposure Prophylaxis (PrEP) to Ireland from Monday 4th December has been welcomed by HIV Ireland. With Ireland facing the prospect that new HIV diagnoses will top 500 for the second year in a row, the introduction of PrEP could be a real gamechanger when it comes to the prevention of HIV transmission.
PrEP is a once daily medication that, in combination with safer-sex practices, has been proven to significantly reduce the risk of sexually acquired HIV-1 infection among uninfected adults at high risk, and has contributed to a 40% decrease in new HIV diagnoses in several clinics in London alone.
Niall Mulligan, Executive Director of HIV Ireland welcomed the news from TEVA as ‘a step in the right direction’ but warned that ‘even at a reduced cost of approximately €100 per month it remains out of reach for many people who would benefit from PrEP. We renew our call on the Government to make PrEP available to all people who need it, and not allow price to be a barrier’.
For further information, please contact:
70 Eccles Street
Mobile: 085 7457951
Tel: 01 8733799
Much has changed in the 30 years since HIV Ireland was established, but some of the same problems – like stigma – remain.
THIS YEAR MARKS the 30th anniversary of HIV Ireland. The organisation, which was previously known as the Dublin AIDS Alliance, offers support and information for people living with HIV and advocates on their behalf.
When it was established in 1987, living with HIV was a very different prospect than it is now.
“Back in the early days, it was really a case of how long do you have left to live,” Niall Mulligan, Executive Director of HIV Ireland, tells TheJournal.ie.
“30 years ago one of the biggest difficulties was people didn’t really understand or know much about HIV. There was no treatment so when the virus hit Ireland it had the same devastation as when it hit San Francisco and other places in the US. There was a real fear around it.”
Mulligan says this fear was “perpetuated” by certain scaremongering campaigns. The 1987 ‘AIDS: Monolith’ advert from the UK springs to mind in this regard:
Due to the lack of knowledge about the virus, Mulligan says many myths about transmission were believed.
“There was a real fear about people with HIV – some people thought you could catch HIV by hugging a person with the virus or by sharing a mug with them.”
Mulligan says this had a “huge effect”, particularly on the gay community, noting: “We’re still struggling with the legacy of that 30 years later.”
Being able to live a normal life
Mulligan says the most significant change to happen in Ireland in terms of HIV in the last 30 years was the introduction of treatment.
“That made a massive difference. People could suddenly have a degree of hope for the future. That was in the early 1990s.
If you contract HIV in Ireland today treatment is free. Once you access it and are compliant with your medication, your prospect in terms of lifespan is pretty much the same as anybody else. People with the virus can now have the same hopes that everyone has in terms of employment and family.
Mulligan says many people are unaware that HIV can become undetectable in people who take their medication consistently and correctly. When this occurs, they are no longer in a position to transmit the virus.
He says this is a “gamechanger” for people living with HIV, “many of whom have grown up surrounded by innuendo, where they were almost treated like ‘the unclean’”.
Increase in diagnoses
The number of HIV diagnoses in Ireland has increased by 35% since 2011. Mulligan says a notable jump in the figures became apparent in 2013 and 2014. Prior to this there had been a consistent level of about 300-350 HIV diagnoses a year. There were 485 in 2015 and 508 in 2016.
Of the new diagnoses last year, just over half (51%) were among men who have sex with men (MSM). According to the Health Protection Surveillance Centre (HPSC), this was the largest number of diagnoses ever reported in MSM, who remain the group most affected by HIV in this country.
In its 2016 report into HIV in Ireland, the HSPC states: “Similar to what was seen overall, the proportion of MSM previously diagnosed HIV positive before arrival in Ireland has been increasing and was 42% in 2016 compared to 16% in 2012.
“The majority of these men (87%) were born abroad, with the highest number from Latin America. Similarly the numbers of new diagnoses in MSM not previously diagnosed abroad dropped by 14% in 2016 compared to 2015.
“Given these increasing proportions of cases new to Ireland who are already known to be HIV positive, it is essential to focus on early engagement in care and immediate initiation of antiretroviral therapy (ART) for clinical benefits, but also to prevent onward transmission.”
The report also notes that 28% of diagnoses in 2016 were among heterosexuals, with people born in sub-Saharan Africa accounting for 64% of heterosexual cases. There were 21 diagnoses among people who inject drugs – a decrease from the numbers in 2014 and 2015 when there was an outbreak of HIV in Dublin among homeless drug users.
We’re on track to top 500 diagnoses in Ireland again this year.
Mulligan says part of this increase is due to people being diagnosed sooner and people who are HIV positive moving to Ireland and having to be tested here in order to gain access to treatment. However, he said this doesn’t “explain away the really significant increase”.
Mulligan says stigma still prevents some people from getting tested earlier. He thinks a national dialogue about the condition needs to happen, saying we sometimes assume young people know more about the virus than they actually do.
A survey carried out by HIV Ireland earlier this year found that one in five 18 to 24-year-olds incorrectly thought HIV can be contracted through sharing a public toilet seat with someone who has the virus, compared to 10% of those over 24.
The same research, which questioned over 1,000 people, found that 24% of respondents incorrectly believed HIV can be transmitted through kissing, while 11% wrongly thought it could be transmitted through coughing or sneezing.
Mulligan wants to see HIV discussed as part of the sexual health education curriculum, noting the topic isn’t broached in many schools.
UNAIDS estimates that about 30% of the estimated 36.7 million people with HIV globally don’t know they have the virus (this figure is 15% in Europe). Mulligan says this presents a number of dangers, both in terms of these people’s personal health and the risk of them unwittingly passing the virus on.
As part of the survey, 168 people with HIV were also questioned. Of this group, 17% said they had felt suicidal in the last year.
Mulligan said that, while Ireland is “hugely advanced” in terms of the medication people can receive, “We’re lagging behind in terms of psycho-social support, especially for people who are recently diagnosed.”
Mulligan says stigma and fear of rejection are still huge issues for many people. In the survey, one in 10 people said they wouldn’t feel comfortable working with a colleague who was HIV positive.
One of the startling things is that we’re still dealing with some of the same issues we were dealing with back in ’80s, such as discrimination and stigma.
HIV Ireland offers free counselling to people living with the virus, a service Mulligan says is always over-subscribed. The organisation also offers free HIV and STI testing. The government has provided funding to the KnowHow Rapid Testing scheme, a HIV testing initiative in pubs and clubs in Ireland, as part of the National Sexual Health Strategy.
HIV Ireland is among those calling for Pre-Exposure Prophylaxis (PrEP), a once-daily medication that can significantly reduce the risk of infection among HIV-negative people at high risk, to be made more affordable here.
Truvada, a PrEP medication, is only available to buy on prescription at a price of over €400 a month in Ireland.
This morning, Taoiseach Leo Varadkar announced that a generic version of the medication will be available via prescription from Monday.
The cost of the drug, made by Teva Pharmaceuticals, will be in the region of €80 to €100 per month. However, it won’t be available to patients under the General Medical Service or Drug Payment Scheme.
Source: Leo Varadkar/Twitter
The HSE is currently conducting an assessment, through the National Centre for Pharmacoeconomics (NCPE), of whether it would be cost-effective to reimburse PrEP.
Gilead Sciences, the manufacturer of Truvada, submitted a rapid review dossier to the HSE Corporate Pharmaceutical Unit in June 2017. The NCPE has requested a full pharmacoeconomic evaluation from Gilead and is awaiting its submission.
A spokesperson for the HSE told TheJournal.ie: “Development and implementation of guidance on the use of HIV medication for PrEP in Ireland is a priority action in the National Sexual Health Strategy. The HSE Sexual Health and Crisis Pregnancy Programme has responsibility for implementation of the strategy and has established a PrEP working group to work collaboratively on making recommendations in relation to PrEP in Ireland.
“The group has continued to work in 2017 on making recommendations in relation to PrEP in Ireland and developing the necessary guidance to inform implementation. This includes development of standards for delivery of PrEP care, drafting a clinical management protocol for PrEP and a monitoring and evaluation framework. Work is planned in the near future to assess the feasibility of implementing the PrEP standards within public STI clinics.
In the interim, practical guidance has been developed for healthcare providers and a patient information leaflet, to support people who are accessing PrEP themselves. A PrEP monitoring clinic is being piloted in the Gay Men’s Health Service (GMHS). People who are accessing PrEP themselves are strongly encouraged to attend for monitoring, either to their GP, their local sexual health service, or to the monitoring clinic in the GMHS.
Earlier this month, Gilead lost a High Court action against generic manufacturers Teva and Mylan.
After PrEP was made available in the UK the number of HIV diagnoses among MSM decreased significantly – by about 32% in the London area, for example. Mulligan says this decrease could be replicated here.
“There’s a sense from the HSE and the Department of Health that there is no opposition to PrEP in principle, it comes back down to money,” he states.
Mulligan says investing in PrEP now makes sense as it would mean not having to pay for lifelong HIV treatment for many people. He says the argument that making PrEP available to MSM will lead to them not using condoms doesn’t stand up.
“We always encourage people to use condoms. PrEP only protects against HIV, it doesn’t protect against other STIs (sexually transmitted infections).”
He adds that the argument is over-simplistic as there are many reasons people don’t use condoms, including being in an abusive relationship. “It’s never as simple as it’s sometimes portrayed,” he says.
Remembering those who’ve died
Today is World AIDS Day, an international event aimed at raising awareness and remembering those who’ve died from the illness – which can develop when HIV is untreated.
An event to mark the day, and HIV Ireland’s 30th anniversary, is due to take place at Áras an Uachataráin this evening.
Mulligan says World AIDS Day is important as it means people won’t “forget the devastation that HIV caused and continues to cause, but certainly caused when it came on the scene back in the ’80s”. He says it’s also an “opportunity for people who have lived through that time to remember friends and colleagues who’ve died”.
“HIV hasn’t gone away in ireland and it certainly hasn’t gone away globally. There are issues in Ireland, but treatment is available and free here. That’s not the case in other parts of the world – many people cannot access treatment. It’s important that organisations around the world show solidarity with each other.”
Press Release 30th November 2017
2017 New HIV Diagnoses Set to be Highest on Record
‘With an average of 10 new HIV diagnoses per week for the second year in a row, Ireland is gripped within a HIV crisis that shows no sign of abating’
On World AIDS Day 2017, Ireland is facing the real prospect that new HIV diagnoses will top 500 for the second year in a row. To date, provisional figures for 2017 indicate there have been 450 new HIV diagnoses in Ireland, similar to this time last year, when a total of 508 people were newly diagnosed as living with HIV [www.hpsc.ie]. If this trend continues in 2017, Ireland is likely to experience one of the highest numbers of new HIV diagnoses on record.
On Friday, December 1st, President Michael D. Higgins will host a reception at Aras an Uachtaráin to mark World AIDS Day, to celebrate the 30th Anniversary of HIV Ireland, and to pay tribute to all people and organisations working to prevent the spread of HIV, both home and abroad.
The global theme for World AIDS Day 2017 is ‘Right to Health – Making it Happen’. The right to health campaign promotes the right of everyone to free HIV testing, the right of people living with HIV to be free of the stigma that often accompanies a HIV diagnosis, an end to HIV transmission, and an end to the isolation that can be a result of living with HIV.
Speaking in advance of the event, Mr. Bernard Condon (SC), Chairperson of HIV Ireland said ‘The national and international response to the AIDS crisis is built on the fundamental right to health and well-being of all people. World AIDS Day acts as an important reminder of the human rights of all people living with HIV, and the challenges they often face in fulfilling these rights. It is incumbent upon all of us to ensure these rights are never forgotten’.
To mark World AIDS Day 2017, and HIV Irelands 30th Anniversary, Niall Mulligan, the Executive Director of HIV Ireland said “Thirty years on from the early days of our organisation, the landscape has changed dramatically, with people diagnosed with HIV now living longer and healthier lives. It is now scientifically accepted that people living with HIV who are compliant with treatment, and have an undetectable viral load, will not pass on HIV to sexual partners. However, as we witness a consistent rise in the number of people being newly diagnosed in Ireland with HIV, it is clear we need to be significantly more proactive in our response to this growing crisis. HIV Ireland calls on the Government to prioritise community based HIV testing, the availability of Pre-Exposure Prophylaxis (PrEP) within Ireland as a proven method of preventing HIV transmission, and a greater emphasis on counselling and support for people living with HIV.”.
For further information, please contact:
70 Eccles Street
Mobile: 085 7457951
Tel: 01 8733799
HIV Ireland Information
HIV Ireland is a registered charity operating at local, National and European level. The principal aim of the organisation is to improve, through a range of support services, conditions for people living with HIV and AIDS and/or Hepatitis, their families and their caregivers while further promoting sexual health in the general population.
Our mission and vision is to contribute towards a significant reduction in the incidence and prevalence of HIV in Ireland and towards the realisation of an AIDS-free generation by advocating for individuals living with HIV, preventing new HIV infections and combating HIV-related stigma and discrimination.
Since 1987 HIV Ireland has been pioneering services in sexual health education and promotion, and has consistently engaged in lobbying and campaigning in the promotion of human rights. Our approach broadly reflects a harm minimisation model which emphasises practical rather than idealised goals. In relation to practical service provision we currently operate under two headings:
- Community Support
- 1-1 Support
- Community Outreach Work
- HIV & STI Community Testing
- Capacity Building with People Living with HIV
- Prevention, Education & Training
- One-day workshops on HIV, STI’s and Sexual Health
- Sexual Health Training for Trainers Programme (Let’s Talk About….Safer Sex)
- Free Condom Service (Just Carry One Campaign)
- Social Media work and campaigning
- Network Involvement
Several important milestones around the health of men who have sex with men have been observed in Ireland this year. HIV Ireland marked its 30th anniversary; so too did the GUIDE Clinic at Saint James’ Hospital; the Gay Men’s Health Service celebrated 25 years in existence; KnowNow, the rapid HIV testing service relaunched after a brief but worrying hiatus; and pharmaceutical giant Gilead lost its court action against the manufacture of generic versions of PrEP, a significant step towards more equitable access to the drug in Ireland.
In 2018, 25 years will have passed since the decriminalisation of homosexual acts between men. Overall, this trajectory is startling. However, so too is the record number of new HIV diagnoses witnessed this year.
It is in the face of this HIV epidemic that masc reflects on the idea of a National AIDS Memorial for Ireland. A monument that ought to be seen as necessary in both grieving for and celebrating all those lives claimed by the disease, and timely in the face of government inaction and an enduring social stigma within and beyond the community – ghostly parallels with a grim past that linger.
Activist Tonie Walsh, pictured above, has led the call for a National AIDS Memorial. Living through, and surviving, Ireland’s plague years from 1984 to 1995, Tonie was entrusted with deeply personal narratives to be brought with him into present day. Biographies, as he sees them, of “our war-torn dead, fractured memories of our walking wounded”, sacred accounts of “the heroism, the steadfastness in the face of brutality and oppression, the sacrifice and enormous emotional costs to those who survived such appalling loss and destruction. Hidden histories that yearn to be heard”.
This powerful call was publicly supported at the HIV Ireland National Conference on HIV and Stigma in September. Niall Mulligan, Executive Director of HIV Ireland, echoed Tonie’s sentiment: “A national AIDS memorial would recognise the lives lost, the grief and sorrow of those left behind, as well as acting as a reminder that there is still work to do to eliminate new HIV infections in Ireland, and combatting HIV-related stigma and discrimination”. International examples of National AIDS Memorials can be found in Amsterdam, Cape Town, London and New York.
By default, a National AIDS Memorial transcends the present. At once, it is an invocation of the horror and heroism of the past and a suggestion of optimism and possibility in the future.
For Tonie, a National AIDS Memorial carries a facilitatory function, stoking “intergenerational dialogue around stories of survival, of hope and wisdom, stories to embolden new generations”. Speaking with masc, Niall Mulligan agrees: “For current and future generations, a National AIDS Memorial has to act as a powerful message of the ability of people to overcome and survive, and of the need to ensure events such as AIDS are not conveniently airbrushed out of the history of Ireland. It makes a national statement that Irish people, and the Irish government, will not forget this part of our very recent history”.
Speaking of Irish government, the absence of political will around the current crisis is blinding, at odds with an Taoiseach Leo Varadkar’s declaration at Dublin Pride that, “the time is absolutely now to act up to the sexual health challenges that we face”. Meanwhile, the nickname Simon ‘Silent’ Harris – as dubbed by ACT UP Dublin, below – has stuck around for a reason.
For David France, author of How To Survive A Plague, a National AIDS Memorial must serve as more than a reminder of the deceased: “It is impossible to count the exact number of the dead, and there is no way to know their names. But we can name the people who allowed this to happen, who didn’t act at a time when the plague might have been contained, politicians and religious leaders who showed not a whisper of leadership at the dawn of a global health crisis. Any memorial to AIDS must hold them to account”.
A National AIDS Memorial can unite in hope, love and anger not just generations within a community. According to Leo Schenk, founding-editor of Hello Gorgeous [a Dutch magazine about positive living with HIV], a National AIDS Memorial, like that in Amsterdam, below, has, “in addition to its national character, an international character, [a means of showing] solidarity with people [affected by HIV and AIDS] from other countries and parts of the world”. As David France rightly says, while AIDS “began as a gay disease in the West […] even in its earliest days [it] took women and heterosexual men, and their children”.
Although Niall Mulligan acknowledges that it can sometimes be difficult to disentangle HIV and AIDS from men who have sex with men in public consciousness, a National AIDS Memorial must be all-encompassing, “reflecting in an obvious and meaningful way all people who contracted HIV and all those who died from AIDS-related illness”. In this country, for example, haemophiliacs who became HIV positive from contaminated blood products during the 1980s cannot be written out.
Philip Baldwin, pictured below, meanwhile, a London-based activist who was confirmed at Southwark Cathedral which has its own AIDS Memorial, considers women “the silent face of HIV, accounting for roughly a third of HIV positive people in the UK and Ireland”. Although he acknowledges that “we are the community most aware of HIV and AIDS, [it] impacts a wide range of people. [A memorial] is equally important for other groups affected [at home] as well as internationally”.
The demography of HIV and AIDS has changed utterly over time and does not discriminate on the grounds of gender, sexuality, class, ethnicity or geography or any other similarly arbitrary marker. However, certain groups are still disproportionately exposed to HIV – injecting drug users, transgender women, people of colour, and those in the criminal justice system. These groups must be afforded targeted prevention and intervention as part of a larger programme of inclusive health messaging.
The meaning that a National AIDS Memorial would bear and the comfort it would offer seems infinite. This at a time, as Philip Baldwin, says, “when many people now living with HIV have never known anyone who has died of AIDS”. In an era of new and increasingly accessible and effective messaging, treatment and prevention, it would commemorate those so cruelly taken before such advances emerged whilst empowering people in their status, provoking further conversations around shame and stigma in an Undetectable=Untransmittable age.
A totem symbolising the strength of community, as well as something to physically rally around, it would unify at a time frequently defined by fracture. It would remind those in power of their predecessors’ “criminal acts of neglect”, as put by David France, which prolonged such loss.
Speaking recently to the Sunday Independent, activist Robbie Lawlor, above, with typical eloquence said, “everyone who is diagnosed with HIV automatically becomes part of this AIDS legacy; what happened in the past, what could have been, what is currently happening, the future of HIV, society’s perception of us and the virus as a whole”.
Arguably, a National AIDS Memorial for Ireland would embody all of these concerns, a medium through which they can find continued expression and exploration at the level of individual, community, society and the wider world.
This article first appeared on masc. on 29 November 2017
As World Aids Day approaches, Jonathan deBurca Butler discovers that although people with HIV can now expect to live full lives, stigma still exists.
Tonie Walsh was diagnosed HIV- positive on a Friday afternoon. As he walked out of St James’s Hospital and into the start of the Dublin weekend, he felt a strange compulsion to tell everyone around him.
“I came out of The GUIDE Clinic for STIs in James’s and had this ridiculous urge to scream my new-found status at the top of my voice to the people standing at the Luas stop,” he recalls. “But I demurred and I went up to work. I remember I was late, and I met Rory O’Neill (Panti) who I was running a club with at the time. Rory asked me where I was. I told him where I had been and told him that I had got my result. ‘And?’ he asked me. And I said: ‘Well, I’m positive’. And without missing a heartbeat he turned to me and said: ‘about bloody time'”.
Looking back on that day 12 years ago, the 57-year-old Dubliner says “getting the news in middle-age felt like an anti-climax”.
As a gay man living through the mid 1980s and 1990s, Tonie had lived through what he calls ‘The War’ – a period when he lost “an increasing amount of friends and lovers” and spent much of his time “wondering when I was going to be next”.
“I think anyone who lived through those horrors and that period will remember the levels of hysteria that existed around the time and we remember the difficulty of trying to advocate around intimacy at a time when contraceptives were illegal,” he says. “We had a Government that was browbeaten by what we now rightly regard as a rather moribund and dodgy Catholic morality around sex and sexual behaviour and it just wasn’t a good time to live through.”
The fear and ignorance around the condition was palpable and it did not help that there were conflicting reports coming from the medical world about how it could be transmitted. Public service adverts featured dark images of faceless reapers claiming vast swathes of corpses and yet the information was vague. One moment it could be caught from kissing, the next it could be caught from using the same cup. In playgrounds up and down the country the cries “you have Aids” were heard coming from the mouths of primary school children who couldn’t possibly have known what exactly they were talking about. But nobody did. Not even their parents who would brandish people they did not like the look of ‘having the look of someone with Aids’.
Early on it was branded the Gay Plague and for the many who perceived gay life as an endless stream of debauchery, it was seen as being good enough for them. It probably helped so-called normal people to feel safe that it was only people who led so-called alternative lifestyles who could, they thought, get the disease. And while there might have been, on the surface at least, more sympathy offered to people who contracted the disease through contaminated blood there was little dignity for them.
In 2000 an investigation into infected blood transfusion products, the Lindsay Tribunal, heard how a father discovered his 10-year-old son was HIV positive when he bumped into a consultant on the street. Having had his son tested in 1984 and having heard nothing, he assumed the boy was clear but when the consultant asked how the counselling was going, the penny dropped; the doctors knew but the family didn’t and they were never offered counselling. He told the tribunal that over the last days the boy had to be fed with a tube.
“He was so thin you would be afraid to look at him,” he told the tribunal. “His eyes were like golf balls.”
Another witness told how her family decided to bring her dead brother back home in the car rather than leave him in hospital where the policy was to place the corpses of people with Aids in a body bag. It was a hell that for the most part went unnoticed and ignored.
And it was not just Ireland. In the UK, certain newspapers demonised homosexuals and drug users. The U.S.A. fared little better. When actress Elizabeth Taylor looked around her and saw people in her industry dying by the score she decided she wanted to raise awareness and funds.
In 1991 she founded the Elizabeth Taylor Aids Foundation. Initially, Hollywood showed it’s true superficial colours and responded with apathy. Tinsel Town did not mind death but this kind of death was insufficiently glamorous.
“No one really wanted to get into it with me,” she said. “I had to take the position, ‘I will not be ignored, so get used to hearing about this from me because you will be, for a long time, or for however long it takes’. I started noticing that my calls weren’t being returned. I must say, that was a first in my life.”
To her eternal credit, Taylor never gave up and eventually people rowed in behind her.
“People thought you could become HIV-positive by breathing the same air,” says Tonie. “There was hysteria around it and a lack of knowledge. When my friends started dying we adjusted to the devastation and the horror in our midst,” he recalls. “Trying to grapple with that destruction and the never-ending funerals, the fundraising for basic facilities to allow people die with dignity and the absence of State funding, it never seemed to end, so you always thought you’d be next.
Then 1996 arrives and there are new antiretroviral therapies and now people are living and surviving and then we realise that HIV is a manageable condition not unlike diabetes. And so I had survived all this and I had to sort of modulate that survivor guilt. Our worlds had been upended. It was chaotic, destructive, tawdry, people died shabby, lonesome deaths and for those of us that survived, we were relieved but also guilty. So when I got my news years after all this…and now I just pop a pill and we live in a very different climate, hence the anti-climax.”
In 1996 the discovery of protease inhibitors which specifically targeted and stopped the spread of the virus in the body meant that treatment for the HIV virus took a giant leap forward. Almost overnight (in some countries at least) something that was considered a death sentence was turned into a condition that could suddenly be managed. The effect was immediate and quite amazing with deaths in the United States, for example, falling from a peak of 50,000 in 1995 to 18,000 two years later. While it couldn’t be cured, it could at least be tamed.
“People with HIV now are living with a chronic illness so it’s not what it was twenty years ago where you ended up with a deficient immune system and would succumb to illness as a result of that deficiency,” says Dr Shay Keating, associate specialist in sexual health and HIV at St James’s Hospital. “Now what we can do is put people on medication and in a matter of months make sure that the virus is not detectable in their blood and that their immune system recovers and is back to being as good as possible. Over the last eight to 10 years the drugs have improved again and so now we have many people on what’s called a single tablet regimen.”
And it is a regimen that, in order to be effective, has to be rigidly adhered to.
Tonie Walsh takes a pill in the morning with around 500 calories of food for better absorption. Although he is overwhelmingly positive about the treatment and is “grateful he lives in a country like Ireland” where the Government subsidises the €40 pill, he is aware that like any long-term treatment there are potential side effects. With the particular drug he takes, for instance, there is an increased risk of cholesterol and heart disease but the alternative is not a choice worth contemplating.
“HIV is nasty,” he says. “It finds its way into your system and hides in there. It lodges there and it cloaks itself and what the antiretrovirals do, is disable it but it’s still there, it doesn’t get rid of it and all it’s waiting for is the opportunity for your body to make a space for it to multiply and take over the host. So it’s really important that people on the treatment adhere to the regimen that they have because if you don’t, HIV will come back and bite you on the ass.”
Indeed, there have been cases in Ireland in the last five years where people have died because of full- blown Aids. Either because they chose not to take the medication or they were not aware of the condition they had.
According to HIV Ireland, there are currently around 4,000 people in Ireland who are knowingly living with HIV. There could well be more and the reason we do not know as much as we should is down in many respects to a lack of education around sex and sexual health.
A cohesive policy around sex education was only enacted by Government for the first time two years ago and while there has been progress around the provision of testing it is slow moving and urban-centric.
Another consequence of this lack of education (or at least the reluctance to talk about sexual health) is that while those with HIV now lead undoubtedly healthier and hopeful lives, there is still a stigma attached to having the illness.
A recently published Knowledge and Attitudes Survey from HIV Ireland revealed that 10pc of people still believed that HIV could be transmitted by sharing a glass, 70pc per cent believed it could be transmitted through biting, while nine pc believed that transmission occurs through toilet seats. Remarkably, when it comes to knowledge of transmission those in the 18-24 bracket were less in tune than their older counterparts – 19pc of 18-24-year-olds believed HIV could be passed through coughing for example, while just 13pc over that age considered it a possibility.
Most startling of all was the fact that just 19pc of those surveyed were aware that the risk of someone who is taking effective treatment passing on HIV through sex is extremely low.
“Things have changed significantly around HIV since the mid-1990s with improvement around treatment,” says Niall Mulligan, director of HIV Ireland. “You would think that would lead to a corresponding decrease in stigma but anecdotally we’ve known for quite a while that’s not always the case. There were some very positive things that came from the survey in terms of acceptance of people living with HIV and a better knowledge of key transmission routes but people still had some real myths around transmission routes like bathrooms and coughing and so on.”
As well as examining attitudes towards HIV among the general populace, the survey asked people with HIV about their own attitudes.
“Most worrying was how being HIV made people feel about themselves,” says Mulligan – “17pc of those surveyed with HIV said they had contemplated suicide over the last year, much higher than the average in the general population. And I think we can link that back to stigma, a fear around disclosing status and the impact that has on their relationships either with family or if they are getting into new relationships, they have to think about this all the time.
“There is a great fear of rejection among people with HIV. Something like 60pc of people felt they would be rejected in a relationship and for 38pc that was in fact a reality.
“When it first came on the scene, HIV and Aids had different target groups,” says Tonie Walsh. “It targeted haemophiliacs, drug users, sex workers, gay men and when you look at those demographics, apart from the haemophiliacs who were seen as kind of innocent if you like, they all brought with them a veneer of ‘transgressiveness’ or criminality and that attached itself to public discourse around HIV and Aids.”
“I’m quite flippant about my status,” Tonie continues, “and I have been from day one but I don’t think there are many who are and I still think that says a lot about the stigma around it. People are worried they’re going to feel judged. My attitude is, I don’t care who knows. There are bigger things to worry about. I mean being 57, I worry about wrinkles or my sagging bottom. There are much more important things to worry about.”
Robbie Lawler is unlikely to witness the generational destruction experienced by Tonie.
“I was born in 1991 and was educated in a Christian Brothers school so I bypassed all and any HIV messaging or education,” he says. “I knew nothing about it. I knew no one who passed away because of Aids. My diagnosis must have been a completely different experience to that of Tonie’s.
“But everyone who is diagnosed with HIV automatically becomes part of this Aids legacy; what happened in the past, what could have been, what is currently happening, the future of HIV, society’s perception of us and the virus as a whole. While our experiences have been different, there are many shared commonalities.”
Like the majority of people with HIV in Ireland, Robbie contracted the virus through unprotected sex.
“I was 21 when I went for my very first sexual health check,” he recalls. “I was called back into St James’s GUIDE clinic three weeks later because my gonorrhoea test came back inconclusive. I hadn’t a clue what was in store for me. When the doctor told me my HIV test came back positive I had no idea how I was getting this diagnosis. I was supposed to head to Australia to work a few months later but I was told that people living with HIV couldn’t get residency visas back then. So my diagnosis was a bit of a double whammy. I was devastated. I knew nothing about HIV. I didn’t know the difference between HIV and Aids. I was telling all my friends I had Aids for a while. It shows my ignorance. I am quite well-educated and would have been on the scene during college years yet I knew no one living with HIV, let alone know it was in the country. I honestly felt like I was the only young person in Ireland living with HIV and that can be quite a lonely feeling.”
Robbie is currently on his fifth round of treatment. He explains that he has had a few bad experiences on different medications and equates the search for the right drug as “like women looking for the right contraception pill, you have to find the right one that suits you best”.
“The medication that has recently come out is so easy to take,” he says. “Thanks to my medication I can live as long as anyone else and I know I cannot pass on HIV. My boyfriend is negative and he just cannot get HIV off me. Simple as that.”
Like Tonie, Robbie feels “blessed to live with HIV in this time” but he is only too keenly aware that there is still a shadow around the condition.
There are, for him, different stigmas in different situations for those with HIV. Active discrimination is one obvious offence but it is one that Robbie feels more able to forgive.
“Why are you with Robbie, he’s a risk?’ I’ve heard those kinds of things but how can I be angry? I used to be someone who didn’t know the difference between HIV and Aids,” he says. “These are people who are saying things out of ignorance. I’m an educator and people change their whole perception of HIV once they learn about it and get to put a face to such a silenced virus.”
Campaigners, crusaders and those who left too soon
Thom McGinty aka The Dice Man
Anyone who rambled up and down Grafton Street in the 1980s and early 1990s will remember the elegant Scot who wowed children big and small with his exaggerated winks and nods. When he went on to The Late Late Show in 1994 and announced he had Aids it was a watershed moment. Here for the first time was someone we felt we knew, someone who lived among us with Aids and we adored him. He passed away in February 1995.
For a long time Freddie Mercury kept his health status to himself. As his partner, Carlow-born Jim Hutton described, “he felt it was his business”. Shortly before his death he released a statement in which he said he had Aids. Jim described their last conversation years later. “[It] took place a few days before he died. It was 6am. He wanted to look at his paintings. ‘How am I going to get downstairs?’ he asked. ‘I’ll carry you’, I said. But he made his own way, holding on to the banister. I kept in front to make sure he didn’t fall. I brought a chair to the door, sat him in it, and flicked on the spotlights, which lit each picture. He said, ‘Oh they’re wonderful’. I carried him upstairs to bed. He said, ‘I never realised you were as strong as you are’.”
NBA superstar Magic Johnson announced that he was infected with HIV in 1991. Initially he announced his retirement from the game but returned and played for numerous seasons on and off thereafter. Arguably, his announcement did more than anyone at the time to break stigma around HIV and Aids.
From 1984-87, young people across Ireland would rush back from Sunday Mass to listen to the dulcet tones of the only preacher they really wanted to hear, the easy-going Fab Vinny. To the few that didn’t have family there, he was our only connection to New York and the music of the United States. Hanley, a hero to a generation, was the first Irish celebrity to die of an Aids-related illness, though it was not something that was confirmed publicly until years later.
Gia Marie Carangi
An American model and was considered by many the first supermodel. By the early 1980s she had become addicted to heroin and her modelling career went rapidly downhill. In 1986, she died of Aids-related complications, becoming one of the first famous women to die of the disease.
This article first appeared in the Sunday Independent on 26th of November 2017.