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