by Rebecca Brown, Ulster University
Human Immunodeficiency Virus (HIV) is an infection which attacks the body’s immune system and, if left untreated, will severely damage the individual’s immune system.[1] In the final stage of the HIV infection, an infected individual will develop Acquired Immunodeficiency Syndrome (AIDS) making them susceptible to serious infections and rare cancers.[2] HIV is spread by unprotected sex, from infected mother to unborn child and exposure to contaminated medical equipment and blood.[3]
The Origins of HIV/AIDs
The emergence of HIV/ AIDS has been traced to the late eighteenth century to the Simian Immunodeficiency Virus. The Simian virus is unique to chimpanzees native to Central Africa but it mutated to be transmissible to humans.[4] Scientists have hypothesised that humans were likely exposed to the virus from the hunting and consumption of ‘bush meat’.[5] Originally the virus was contained to an isolated population in Africa, but increased urbanisation and travel allowed HIV/AIDs to spread globally.[6] However, in 1981, in the USA, reports of a mysterious disease gained public traction with the New York Times reporting ‘rare cancer seen in 41 Homosexuals’.[7] The rare cancer described was Kaposi’s sarcoma which ordinarily only affected individuals aged over 50. Additionally, the Centre for Disease Control and Prevention (CDC) in the Morbidity and Mortality Weekly Report described in Los Angeles cases of rare pneumocystis carinii pneumonia (PCP) in five gay men.[8]
Image: Time To Talk: Advertisement for the Sexual Health and AIDS Team of the Eastern Health and Social Services Board (1990-99]
GRID
At the end of 1981, in the USA at least 200 deaths were linked to the disease. Subsequently, doctors attributed the deaths to what was officially known as Gay Related Immune Deficiency (GRID) but colloquially known as ‘gay cancer’ or ‘gay plague’. Virginia Berridge finds doctors theorised that GRID was caused by a combination of recreational drugs such as nitrate inhalants (poppers) and ‘high incidence of sexually transmitted disease among gay men with the regular use of antibiotics to deal with them’ causing the immune system to wear out.[9] However, soon the CDC realised that anyone could be infected with GRID with the most common victim’s being gay men, users of intravenous drugs and haemophiliacs.[10] On 24 September 1982, the CDC announced in the Morbidity and Mortality Weekly Report that GRID would be renamed Acquired Immune Deficiency Syndrome (AIDS). Additionally, they provided the first case definition of AIDS as ‘a disease at least moderately predictive of a defect in cell-mediated immunity occurring in a person with no known case for diminished resistance to that disease’.[11] In 1984, the cause of AIDS was identified as the HIV virus. The discovery of the virus was made by two research teams the first in Paris led by Luc Montaginer at the Pasteur Institute and the other in Maryland led by Robert C. Gallo at the National Cancer Institute of Health.[12] In 1985, in the USA the first blood test for HIV was created and quickly became available in the United Kingdom. [13]
HIV/AIDS arrives in Belfast
In the United Kingdom, at the end of 1981, the first reports of AIDS appeared in the Lancet and soon cases began to rise. In 1985, the Irish Times reported the first case of HIV in Belfast in a twenty-five-year-old male and in August the first death.[14] However, in 1985, Belfast and the rest of Northern Ireland was amid the sectarian conflict colloquially known as the Troubles which affected the experience of HIV/AIDS. According to the former Irish Minster for Health, Barry Desmond, the Troubles eclipsed the HIV/AIDS epidemic in political terms as there was a ‘huge security problem’ caused by the armed conflict between the Irish Republicans and Ulster loyalist paramilitary groups.[15] Additionally, the violence discouraged the movement of people into Northern Ireland and stunted tourism. This inadvertently reduced the likelihood of infection.[16] Moreover, in Northern Ireland the use of hard drugs was rare due to paramilitary groups preventing their introduction. In total, there had been 39 registered intravenous drug users, according to a 1990 report.[17]
Contaminated Blood Scandal
In the 1970s and 1980s, in the United Kingdom nearly 5000 haemophilia patients were infected by the NHS with HIV and hepatitis because of the use of contaminated clotting agent called Factor VIII.[18] Factor VIII was created by combining and concentrating the human blood plasma from thousands of donors but even if one donor was infected the entire batch would be contaminated. However, in 1973, a lack of UK produced Factor VIII forced the government to import the clotting agent from the USA which used blood collected from high-risk donors such as prison inmates, sex workers and drug users.[19] In Belfast, at the Royal Victoria Hospital, Dr Elizabeth Mayne the consultant in charge, introduced the Factor VIII treatment.[20] However, even when Dr Mayne was informed of the potential contamination, she believed that the treatments benefits prevailed over potential risks.[21] Subsequently, at the Royal Victoria Hospital, 112 patients were treated with Factor VIII. Sadly 16 developed HIV and 76 developed hepatitis.[22] By 1991, in Northern Ireland, as with the United Kingdom in general, all blood products were screened, and synthetic treatments began to be used to treat haemophilia patients minimising the risk of infection.[23]
Reaction to HIV/AIDs Globally and in Belfast
In the 1980s, the initial global reaction to the HIV/ AIDS epidemic was characterised by moral panic, fear, and ignorance as there was no cure with those diagnosed were faced with certain death.[24] The initial link to the gay community caused misinformation leading to outright homophobia and intolerance.[25] British newspapers such as The Times, the Mail on Sunday and News of the World began to whip up public hysteria publishing inflammatory headlines such as ‘Blood Banks Spread AIDS Illness’, ‘Britain Threatened by Gay Virus Plague’ and ‘Gay Plague brings New Havoc’.[26] In Belfast, fear and ignorance were apparent in an article in the Irish Independent which detailed a series of hoax letters sent across Belfast supposedly from the Royal Victoria Hospital asking recipients to contact the hospital because of their connection to a person diagnosed with HIV.[27] Additionally, homophobic attitudes were apparent in Belfast newspapers such as Sunday Life the sister newspaper to the Belfast Telegraph. In 1991, Sunday Life reported that Belfast was becoming the ‘gay capital’ of the United Kingdom due to men travelling from London due to the country’s ‘lower risk of catching HIV’.[28] Furthermore, in 1990, the Northern Ireland Social Attitudes Survey found that the Belfast public’s stance on HIV/AIDs was shaped by devout Christian beliefs, moral conservatism, and beliefs that HIV/AIDS was a ‘gay disease’ spread by ‘perverted sex’.[29] In Belfast, as with the rest of Northern Ireland the climate towards HIV/AIDS was unsympathetic, intolerant, and judgemental.
Image: AIDS Affects Irish People. Advertisement by the Southern Health Board. Colour lithograph by Kieran O’Connor, November 1992. Wellcome Collection. Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).
International policy on HIV/AIDs
In 1986, the World Health Organisation (WHO) established a Global Programme on AIDS which strove to unite global action by providing support to countries, and conducting research which would be used to create evidence-based policies.[30] Moreover, WHO promoted a policy which advocated the rights of individuals with a system of harm reduction with safer sex rather than absence.[31] The result of the Global programme was a ‘mobilisation of support’ for HIV/AIDS prevention and management with over 155 participating,[32] Also, in 1988, WHO launched World AIDs Day which now occurs annually on 1 December to spread awareness and mourn those who sadly died.[33]
British Government Policy on HIV/AIDS
In Belfast, due to the Troubles, the British government imposed direct rule on Northern Ireland whereby policies did not require the consent of local parties for decisions. Therefore, the political response to HIV/AIDS was coordinated by the British government in Westminster. Initially, the British Prime Minister, Margaret Thatcher, was cautious in her response to the HIV/AIDS epidemic which potentially cost many lives fearing that descriptions of ‘risky sex’ could be harmful and cause people to ‘experiment’.[34] Finally, in 1986, Thatcher was spurred into action to quell public the hysteria establishing an emergency ministerial cabinet on AIDS chaired by the deputy Prime Minister William Whitelaw. By March 1986, a series of full-page adverts appeared but this endeavour was widely condemned for its non-existent impact on the public.[35] However, in October 1986, the Whitelaw Committee was established. It introduced a £20 million public health awareness campaign spearheaded by serving health and social security secretary Norman Fowler. The campaign used mass media which was deliberately fear-provoking with the key strapline ‘AIDS: Don’t Die of Ignorance’[36] Additionally, 23 million information leaflets to explain HIV and AIDS were sent to households across the United Kingdom.[37] The campaign was mostly positive as it raised public awareness that ‘anyone can get it, man or women’ worlds away from the ‘gay plague’ plugged by the tabloids. [38]
Local Campaigns and Community Responses in Northern Ireland
In 1990, in Belfast and the rest of Northern Ireland the national campaign was supplemented with the creation of the AIDS Steering Group which developed a training strategy for AIDS education and awareness programmes.[39]Additionally, in 1986, in Belfast, the LGBTQ+ community led by Cara friend established a voluntary helpline for those effected by HIV/ AIDS.[40]Also, Cara-Friend took on the role of educating the LGBTQ+ community in Belfast arranging AIDS awareness workshops.[41]
Treating HIV and AIDS in Belfast
The period 1981 to 1996 were the crisis years of the HIV/AIDS outbreak as no effective treatment existed. For most people, a diagnosis was tragically a death sentence.[42] Initially in Belfast, as with the rest of United Kingdom, funding for AIDS treatment was channelled into specialist palliative hospital units as patients often experienced prejudice on open NHS wards.[43] In 1987, at the Middlesex Hospital in London, Princess Diana opened the first of these units and in Belfast a unit was opened at the Royal Victoria Hospital. Eventually, in 1987, a treatment for HIV emerged, using a single drug called azidothymidine or ATZ an antiviral drug previously used to treat cancer.[44] According to Heinrich Kremer, initially AZT showed promising results, but its success was short lived as the virus quickly mutated to become resistant. However, in 1996, there was a historic breakthrough, with the invention of Highly Active Antiviral Therapy (HAART) which was a combination of multiple antiviral drugs which effectively suppressed the virus. Subsequently, the treatment became rapidly available on the NHS reducing the morality rate by 90%, saving many lives.[45]
Image: Greg Owen. AIDS Activist from Northern Ireland. A & U Magazine.
PREP Treatment in Belfast
In recent years, preventative treatments have emerged for HIV, such as Pre-exposure prophylaxis (PrEP). PrEP is a daily oral combination pill which contains antiretroviral drugs such as tenofovir and emtricitabine taken by HIV-negative individuals to lower the risk of HIV infection.[46]In 2012, in the USA, PrEP was approved becoming available on most health insurance plans.[47] In 2014, in the United Kingdom, the PROUD (pre-exposure option for reducing HIV in the UK: immediate or deferred) study began in England with over 500 participates. However, in 2016, NHS England, using the results from the PROUD study, announced that they would not commission PrEP. It argued that local authorities were ‘the responsible commissioner for HIV prevention services’.[48]
Accessing PrEP treatment cost £500 a month on a private prescription was not feasible for many. In 2015, Greg Owen, who grew up in Belfast during the Troubles and later moved to London, heard about this medicine which could prevent people from contracting HIV. Unfortunately, Owen heard about the PROUD study too late and was unable to enrol. However, in August 2015, a friend from the USA who was switching medication offered him his spare medication. Before starting the treatment Owen went to a sexual health clinic to make certain he was HIV-negative, but the result returned positive. In October 2015, despite his diagnosis Owen decided, out of a sense of obligation and anger, to establish a website called I Want Prep Now with his friend Alex Craddock. The website offered a cheap generic non branded version of PrEP which cost around £50 a month serving to avoid thousands of new HIV cases.[49]
On 13 July 2016, the National AIDS Trust brought a case before the High Court against the NHS England’s decision on PrEP. Subsequently, the High Court decided that the NHS in partnership with local authorities was responsible and should fund PrEP.[50] A trial system called PrEP Impact in England was launched with 26,000 places and its success allowed for unlimited places. In 2018, in Northern Ireland a pilot was launched for a centralised PrEP clinic in Belfast at the Royal Victoria Hospital.[51] However, in 2020 due to the coronavirus pandemic the PrEP clinic was suspended indefinitely. Finally, in April 2021, the PrEP clinic was reopened with a grant of £300,000 to make the treatment accessible to all those eligible in Northern Ireland. [52]
© The Author(s) 2021. Published by the Epidemic Belfast team on behalf of Ulster University. Any unauthorised broadcasting, public performance, copying or re-recording will
constitute an infringement of copyright.
[1] Paul Volberding, Merle Sande, Joep Lange, Warner Greene and Joel Gallant (eds), Global HIV/AIDS Medicine (New York, NY: W.B. Saunders, 2007), p. 1.
[2] ‘HIV/AIDS’ World Health Organisation https://www.who.int/health-topics/hiv-aids/#tab=tab_1 Accessed 21 August 2021.
[3] ‘HIV and AIDS’ Belfast Health and Social Care Trust https://belfasttrust.hscni.net/healthy-living/hiv-and-aids/ Accessed 21 August 2021.
[4] Alexander V. Belushkin and Arne T. Skjeltorp, Evolution from Cellular to Social Scales (New York, NY: Springer, 2008), p. 97.
[5] Gregory Maddox, Sub-Saharan Africa: An Environmental History (Santa Barbara, C.A.: ABC-CLIO, 2006), p. 165; I. W. Fong, Emerging Zoonoses: A Worldwide Perspective (New York, NY: Springer, 2017), p. 8.
[6] Max Essex, Emerging Infections in Asia (New York, NY: Springer, 2008), p. 140.
[7] New York Times (3 July 1981).
[8] Morbidity and Mortality Weekly Report (5 June 1981); National Academy of Sciences, Institute of Medicine: Confronting AIDS: Directions for Public Health, Health Care and Research (Washington, DC: National Academy Press, 1986); Young Soo Kim, ‘World Health Organisation and Early Global Response to HIV/AIDS: Emergence and Development of International Norms’, Journal of International and Area Studies, 22 (2015), pp. 19-40.
[9] Robert Gillett and Lisa Downing, Queer in Europe Contemporary Case Studies (Milton Park: Taylor & Francis, 2016), p. 59; Virginia Berridge, AIDS in the UK: The Making of Policy, 1981-1994 (Oxford: Oxford University Press, 1996), p. 28.
[10] Rachel Kranz and Tim Cusick, Gay Rights (New York, NY: Facts On File, Incorporated, 2014), p. 39.
[11] Morbidity and Mortality Weekly Report (24 September 1982).
[12] Teri Shors, Understanding Viruses (Burlington: Jones & Bartlett Learning, 2017), p. 533.
[13] Ira M. Schwartz, A Comparative Perspective on Major Social Problems (Washington, DC: Lexington, 2001), p. 202.
[14] Irish Independent (22 August 1985).
[15] Ann Nolan, ‘The Gay Community Response to the Emergence of AIDS in Ireland: Activism, Covert Policy, and the Significance of an “Invisible Minority’, Journal of Policy History, 30 (2018), pp. 105-127.
[16] Peter Stringer and Gillian Robinson (eds), Social Attitudes in Northern Ireland (Belfast: Blackstaff Press, 1991), pp. 120-142.
[17] Paula Kilbane, AIDS Strategy in Northern Ireland: Low Prevalence, High Co-operation – Report of a Working Party (London: King’s Edward Hospital Fund for London, 1990).
[18] Irish News (2 September 2020); BBC News NI (19 May 2021).
[19] Belfast Telegraph (1 March 2021).
[20] ITV News (2 April 2021).
[21] ‘Contaminated Blood Inquiry: Some Patients Used as ‘Guinea Pigs’’. https://www.pslhub.org/blogs/entry/2134-contaminated-blood-inquiry-some-patients-used-as-guinea-pigs/ Accessed 21 August 2021.
[22] Belfast Telegraph (31 March 2021); The Haemophilia Society ‘The infected blood Public Inquiry Newsletter’ https://haemophilia.org.uk/wp-content/uploads/2021/04/IBPIupdateweek31.pdf. Accessed 21 August 2021.
[23] BBC News (27 July 2021); The Haemophilia Society The Contaminated Blood Scandal https://haemophilia.org.uk/public-inquiry/the-infected-blood-inquiry/the-contaminated-blood-scandal/. Accessed 21 August 2021; Belfast Telegraph (31 March 2021).
[24] World Health Organisation, ‘Why the HIV Epidemic is Not Over’. https://www.who.int/news-room/spotlight/why-the-hiv-epidemic-is-not-over. Accessed 8 August 2021.
[25] Gerard Rodgers, Being Gay in Ireland: Resisting Stigma in the Evolving Present (Washington, DC: Lexington, 2018), p. 14; Independent (6 January 2017).
[26] The Times (24 December 1984); Mail on Sunday (6 January 1985); News of the World (5 November 1985).
[27] Irish Independent (16 October 1985).
[28] Sunday Life (24 March 1991).
[29] Ian Sneddon and John Kremer ‘AIDs and the Moral Climate’, in Robinson and Stringer, Social Attitudes, p. 120.
[30] Kim, ‘World Health Organization’.
[31] Avert, History Of HIV And Aids Overview, https://www.avert.org/professionals/history-hiv-aids/overview Accessed 21 August 2021. Michael Merson ‘The HIV–AIDS Pandemic at 25: The Global Response’, New England Journal of Medicine, 354 (2006), 2212-2417.
[32] Jonathan Mann, Harvey V. Fineberg and Jaime Sepulveda, AIDS Prevention Through Education: A World View (Oxford: Oxford University Press, 1992), p. 23.
[33] Kara Rogers, The Reproductive System (New York, NY: Britannica Educational Publishing, 2011), p. 247.
[34] Guardian (30 December 2015).
[35] Elizabeth Fee and Daniel M. Fox, AIDS: The Making of a Chronic Disease (Berkeley, CA: University of California Press, 1992).
[36] Truglio Londrigan and Sandra Marie Lewenson, Public Health Nursing: Practicing Population-Based Care (Burlington: Jones Bartlett Learning, 2017), p. 369
[37] HIV and AIDS Related Health Services Report by the Comptroller and Auditor General Ordered General Ordered by the House of Commons.
[38] Beyond the Tombstone: How British TV Responded to the AIDS Crisis https://www.bfi.org.uk/features/british-tv-aids-crisis Accessed 21 August 2021.
[39] HIV and AIDS Related Health Services Report.
[40] Kilbane, AIDS Strategy.
[41] Strabane Chronicle (18 February 2021).
[42] Select Committee on HIV and AIDS in the United Kingdom 1st Report of Session 2010–12 (London: Stationery Office Limited. 2011); Avert, Global HIV statistics.
[43] Ruth Thorlby Where the Patient was King? A Study of Patient Choice and its Effect on Five Specialist HIV Units in London (London: King’s Fund, 2006), pp. 5-8.
[44] New York Times (21March 1987); Independent (23 October 2011); Imperial College London, The Search for the Cure https://www.imperial.ac.uk/stories/search-for-the-cure/ Accessed 21 August 2021; Sarah Earle, The Sociology of Long Term Conditions and Nursing Practice (Basingstoke: Palgrave Macmillan, 2009), p. 175.
[45] S. Dougan, B.G. Evans, N. Macdonald, et. al.,‘HIV in Gay and Bisexual Men in the United Kingdom: 25 Years of Public Health Surveillance’, Epidemiology and Infection, 136 (2008), pp. 145-56; A.C. Bailey and M. Fishere, ‘Current Use of Antiretroviral Treatment’, British Medical Bulletin, 87 (2008), pp. 175-92; Julie S. Eggleton and Shivaraj Nagalli, ‘Highly Active Antiretroviral Therapy (HAART)’, https://www.ncbi.nlm.nih.gov/books/NBK554533/ Accessed 21 August 2021.
[46] Barbara K. Timby and Nancy E. Smith, Introductory Medical-Surgical Nursing (Philadelphia, PA: Wolters Kluwer Health), p. 541.
[47] Sarah Bernays, Adam Bourne, Susan Kippax, Peter Aggleton and Richard Parker, Remaking HIV Prevention in the 21st Century (New York, NY: Springer, 2021), p. 5.
[48] Update on Commissioning and Provision of Pre-Exposure Prophylaxis (PREP) for HIV Prevention. https://www.england.nhs.uk/2016/03/prep/ Accessed 1 September 2021.
[49] Greg Owen: Cover Story https://aumag.org/2018/12/07/greg-owen-cover-story/ Accessed 20 June 2021; iwantPrEPnow website founded out of necessity https://www.unaids.org/en/resources/presscentre/featurestories/2019/november/20191128_iwantprepnow Accessed 20 June 2021.
[50] Engrid Young, Nicola Boydell, Chris Patterson, Shona Hilton and Lisa McDaid, ‘Configuring the PrEP User: Framing Pre-exposure Prophylaxis in UK Newsprint 2012–2016’, Culture, Health & Sexuality, 23 (2021), pp. 772-87.
[51] PrEP service in Northern Ireland https://transgenderni.org.uk/prep-service-ni/ Accessed 20 June 2021; How to access PrEP in Northern Ireland. https://www.rainbow-project.org/how-to-access-prep-in-ni/ Accessed 20 June 2021.
[52] PrEP Clinic in Northern Ireland https://www.gaytimes.co.uk/life/prep-clinic-in-northern-ireland-indefinitely-suspended-due-to-coronavirus/ Accessed 20 June 2021.