Time to take care: fighting HIV with health promotion in Edinburgh, 1983–1996

Introduction

AIDS in Scotland

Despite AIDS being first recognised in 1981, it was not until 1984 that Edinburgh’s City Hospital reported their first case of AIDS.1 By 1986 the city of Edinburgh had been branded the ‘AIDS Capital of Europe’ by the Sunday Telegraph,2 a consequence of the rapidly increasing infection rates.

Due to the work of Roy Robertson, a GP in the Edinburgh district of Muirhouse, and his study of hepatitis B in intravenous drug users (IVDU),3 it was possible to date the first incidence of the HIV virus (then known as HTLV-III) amongst the Edinburgh and Lothian population. Analysis of the blood samples that Robertson had collected led to the possibility of identifying the virus as it entered the cohort of IVDU in the city (from an unidentified source) in 1982,4 and as it subsequently spread rapidly through the population. It is estimated that between 1983 and 1984 alone, over 1,000 IVDU were infected with HIV.5

The AIDS epidemic in Edinburgh and resultant health promotion in Lothian was highly dependent on the changing patterns of illicit drug use in Edinburgh. Between the years of 1980 and 1983, there was a dramatic shift in the way the Edinburgh drug scene functioned. Political upheaval in Afghanistan and Iran led to an increased supply and wider availability of heroin, causing a shift in primary drug use away from students and political campaigners to lower socioeconomic groups.6 In an already socially segregated city,7 this shift of illicit drug use into more deprived demographic groups led to a police crackdown. Officers began to run an unofficial ‘stop and search’ policy on individuals they considered ‘suspicious’, confiscating any injecting equipment they found and viewing this as a means to preventing further misuse.8 Concurrently, Edinburgh’s primary supplier of clean injecting equipment, located on Bread Street, was forced by police pressure to close down.9 It is therefore possible to consider that these measures led to an increased level of needle sharing in Edinburgh, contributing to the propagation of ‘Shooting Galleries’, where multiple drug users would share one set of injecting equipment.10

The implications of intravenous drug misuse, and its function as a catalyst for the spread of the blood-borne virus, was recognised by the seminal McClelland Report published by the Scottish Committee on HIV and Intravenous Drug Use in September 1986.11 This report identified the significance of the problem in Edinburgh, and the urgency with which it needed to be tackled in order to prevent a second wave of the epidemic via heterosexual spread before HIV could become a ‘serious threat to the general population’.11 The report (which featured controversial suggestions of substitution prescribing and needle exchange programmes) caused upheaval within the Edinburgh health authorities. It met opposition so significant12 that, despite clear evidence of success overseas, it was not until April 1987 that Edinburgh saw the introduction of its first needle exchange scheme.13

Despite such reticence, it was clear that the report’s emphasis on the risk of heterosexual spread of HIV resounded distinctly with the Edinburgh authorities. The Lothian Health Board’s (LHB) Annual Report (1989) acknowledged the vital importance of educating the public in order to prevent further spread.14 Reflecting on previous campaigns under the Scottish Health Education Group (SHEG), the Health Education Authority (HEA), and the national government, the McClelland Report recognised the importance of being ‘public’ and ‘open’ with issues involving drug misuse, contraception and sex at a time when these issues were often suppressed.15

The consequent environment, produced by the tensions placed on the Edinburgh services by the imminent threat of a developing HIV/AIDS epidemic, provided the backdrop for the formation of a set of campaigns that promoted a more holistic, positive and uplifting message. These campaigns encouraged individuals to foster mindsets in which informed choices about sex could be made, motivated by respect rather than fear. This approach can be compared to the UK government’s 1987 ‘AIDS: Don’t Die of Ignorance’ campaign, which is remembered as being broadly successful in terms of raising awareness of AIDS in the general population, but has also been embedded in popular culture through its deliberate shock tactics (tombstone imagery, for example).16,17

Aims

The aims of this study were:

1. To explore the development of the methods and tactics through which Lothian Regional Council (LRC) and LHB approached health promotion in order to tackle the HIV/AIDS crisis in the 1980s and 1990s, in the context of the storical, social and political setting.
2. To examine and analyse the HIV-related health awareness and prevention campaigns produced by the LRC and LHB within such historical, political and social contexts.
3. To provide an essence of the breadth of the response that health campaigns took to the HIV/AIDS crisis.

By offering a depiction of both the successes and the failures of these campaigns, we hope to provide material for reflection on lessons for tackling the current and future issues we face, such as the coronavirus pandemic.18

Methods

Primary sources

We relied on primary source material held by Lothian Health Services Archive (LHSA), University of Edinburgh. Eleven LHSA collections documenting the response to HIV in Edinburgh and the Lothians have been inscribed to the UNESCO UK Memory of the World Register on account of their national and international cultural significance. These collections form the basis for this study, and cover the period from 1983 to 2010, covering the height of the HIV/AIDS epidemic in Edinburgh. They comprise a range of documents and objects, varying from local government policy papers, to health promotional campaign posters, t-shirts, pill packets, and condoms.

Source lists and item catalogues of all 11 collections were analysed. Three collections were found directly relevant to the project, and eight were considered accessory. Of the three collections, ‘GD22 – The Take Care campaign’ was thought to represent the most relevant primary source material. This collection comprised a variety of content, from policy reports and documents, to fragile items such as degrading balloons that needed great care when being handled. From the extensive collection, eight items were selected for detailed analysis, partly due to their condition and quality, but primarily due to their value as representations of the health campaigns through which they were generated.

These eight items were analysed within their historical context, provided by primary sources from the archive. These sources were provided by collections LHB45 (Lothian Health Board Management and Health Promotional Department) and GD24 (Lothian Regional AIDS Team). Additionally, the eight primary sources were explored in the context of secondary sources provided by targeted searches online.

Secondary sources: search strategy and selection criteria

Secondary sources were identified by searches of PubMed, JSTOR and DiscoverEd (Edinburgh University’s online source database), and the references from relevant articles using search terms ‘HIV Edinburgh’, ‘Health promotion Edinburgh’ and ‘Take Care Campaign’. Only articles that appropriately placed the primary sources in their historical and political context were selected.

The first response

Initially labelled GRID (gay-related immune deficiency) in popular discourse due to the cohort of patients in which it initially presented in the US, AIDS was primarily seen as an issue for homosexual men.15,19 Hence it was unsurprising that Scotland’s first response to this threatening new disease came from the gay community. Before considering the approach that public bodies in Lothian took in the battle against HIV/AIDS, focus first needs to be placed upon key independent organisations that preceded any formal policy, such as the Scottish AIDS Monitor (SAM). SAM was founded in 1983 in response to observations of gay visitors to US cities like New York and San Francisco, who saw communities hard hit by a mysterious disease.20 With transatlantic travel facilitated by cheap flights,21 it seemed only a matter of time before gay men in Scotland began falling ill, and SAM aimed to prepare the Scottish homosexual community. An informational hub, SAM introduced its first campaign – and the first AIDS-related campaign in Scotland – in 1983: the ‘Safe Sex’ campaign.22 Aimed specifically at men who were having sex with men, its purpose was to promote healthy and responsible sexual practice in light of what was being seen in headlines about AIDS in the media.

In 1985, due to the development of a virology test for HIV antibodies23 and the pioneering work of Roy Robertson,3 light was shed on levels of infection within Edinburgh, and it was possible to see that over 60% of IVDU were infected.6 Such evidence of the real threat that HIV posed to Edinburgh led to SAM being awarded charitable trust status that same year, with a grant of £35,000 from the Scottish Home and Health Department,22 and an instruction to expand its remit from purely the homosexual community.

Consequently, in 1986 SAM produced one of its first more widely targeted pieces of health promotion: a leaflet entitled ‘AIDS is/AIDS isn’t’.24 The leaflet was in plain newspaper print with no images or colour, but instead dense in textual information. Purely explanatory, the purpose of the leaflet was to dispel misinformation and to replace it with fact. The leaflet aimed to quell fears that had grown out of the unknown, emphasising how AIDS was not spread by ‘kissing, hugging, shaking hands, sleeping with a person, using the same cup, cutlery, clothes, towels’ or by sharing ‘a lavatory seat’. In line with the origins of SAM, the leaflet also reinforced that AIDS was not a ‘gay plague’ – a stigma that the infection had carried since the early 1980s.

Later that year (September 1986), the publication of the McClelland Report drew attention to aspects of the AIDS crisis in Edinburgh that had been previously overlooked. Focusing on the population of IVDU, estimated at the time to be over 1,800 in Scotland alone,11 the report highlighted that this young, sexually active group of individuals had the potential to incite a second wave of the epidemic. Bringing to the forefront the consequent potential for a massive spread into the heterosexual population, the report enforced the absolute requirement for the development of prevention strategies.

It’s time to ‘Take Care’

In addition to encouraging changes in drug misuse policy, the McClelland Report also highlighted a requirement for new, bigger health promotion strategies in order to slow the HIV/AIDS epidemic and reduce the risk of heterosexual transmission. Giving evidence to the House of Commons Social Services Committee in 1987, Will Mallinson of SAM stated the limitations of UK-wide public health campaigns in addressing issues specific to the spread of HIV in Scotland. Dr Ray Brettle (Consultant in Infectious Diseases, City Hospital, Edinburgh) stressed the importance of ‘presenting a caring image’ in health messages around AIDS.22 Subsequently, the decision was made to give more autonomy to SHEG in order to target issues appropriate and specific to Scotland. In addition, drug campaigns produced in England tended to be negative in tone, focusing on harsh methods imagery such as pictures of needles piercing multiple arms.25 This differed from the approach to advertising that Scottish authorities had traditionally favoured: generally positive campaigns that focused on healthy lifestyles, activities and refusal skills, such as SHEG’s award-winning 1985 campaign ‘Choose Life not Drugs’.1

Reflecting this, LHB and LRC jointly devised a campaign that aimed to draw on an uplifting approach, creating a new campaign specific to Lothian. This campaign was devised at a time when Lothian had four times the national average of HIV-infected individuals,26 and was hence driven by a sense of urgency. Labelled the ‘Take Care’ campaign, the essence of the initiative was to be positive and affirmative whilst informing Edinburgh citizens about how to make appropriate health decisions.

Broad and general, the campaign was produced for the Lothian community as a whole, not excluding or stigmatising groups or behaviours. This contrasted previous campaigns that had tended to focus on ‘at-risk’ groups, a decision that was made in an effort to dissipate the defensive posture that had developed in Lothian against marginalised demographic groups. In addition to this, it was assumed by LHB and LRC that it was not necessary to have elements of the campaign aimed specifically at the two highest risk groups – gay men and IVDU – a decision justified by the fact the gay community was thought to be already well informed and organised, and that it was hugely difficult to promote changes in behaviour via health promotion in IVDUs.26 A conscious decision of exclusion, this can not only be interpreted as a way of further excluding IVDU from normal societal expectations, but also as a method of contributing to the ‘de-gaying’ of the HIV/AIDS crisis,27 as the focus of health promotion moved into the heterosexual sphere.

At the heart of the campaign itself was a desire to orientate individuals not only to look after their own health, but also the health of those for whom they cared. Centred around a basic message to ‘Take Care’, the initiative had a flexibility that meant it could be applied specifically to a range of distinct health practices.26 The campaign had four clear aims that centred around it being visible and recognisable, providing and supporting educational opportunities, and developing an environment within which ‘taking care’ as a concept could be supported.26 The key to making the campaign distinct and remarkable centred around its distinctive logo (Figure 1).28 In the shape of a clock, the logo was fuchsia pink and royal blue both to highlight its visibility and to open it to all genders. Open to interpretation, the clock image implied concurrently that it was time to take care, and that the time to make a difference was running out. This clock imagery became synonymous with the campaign, featuring on advertisements throughout its lifespan.

In each phase, the campaign encapsulated the ‘Take Care’ message through a different slogan, starting with ‘Take Care of the One You Love’.26 The official launch of the campaign itself was executed on a huge scale: chosen to be on St Valentine’s Day 1989 in order to associate it with not only sex, but also love, companionship and romance. A feat of coordination and precision, the launch featured a collaboration with Lothian Buses in the creation of a pink ‘Take Care’ double decker bus (Figure 2).29 This bus was a moving canvas with the ability to travel around the city throughout the duration of the campaign, delivering information and health advice. Furthermore, as part of the launch, 50 other regional buses bore the ‘Take Care’ logo, in addition to the slogan ‘AIDS Concerns Us All’, drawing public attention to the risk of heterosexual spread.26 The campaign also featured in The Scotsman and the Evening News (Edinburgh’s local newspaper), while a huge banner was hung over the Mound – a hilly locus of central Edinburgh – bearing the same slogans. Furthermore, postcards containing information about AIDS and AIDS services were sent to 320,000 homes in Lothian. With these being only a selection of the many initiatives of the campaign, the launch of ‘Take Care’ infiltrated all corners of Lothian – from pubs that received balloons and beer mats, to schools that received educational packs. The ‘Take Care’ brand was continued through its poster marketing campaigns. One such poster was the image of a stylish heterosexual couple in an embrace, both wearing the ‘Take Care’ logo as a watch (Figure 3).30 This became one of the most widely distributed posters, with 1,500 copies being printed and displayed throughout Lothian. The poster was symbolic of how the ‘Take Care’ initiative aimed to encapsulate the importance of sexual protection, not only in a health context, but also in a romantic one. Using contemporary imagery focused on attracting the attention of the Edinburgh youth, the poster aimed to make taking care cool, chic, and also a very heterosexual concern. ‘Take Care’ continued from the late 1980s into the 1990s, with a rebranding of the campaign using a new slogan – ‘It’s time to Take Care’26 – to promote the importance of health protection in the face of AIDS.

Figure 3 Marketing of the ‘Take Care’ campaign through a poster of a stylish heterosexual couple

figure_3.jpg

The C-card

The final of the four aims of the ‘Take Care’ campaign was ‘To develop and create an environment in which individuals can live out Taking Care’.26 This focused on providing sufficient resources to the Edinburgh community in order to allow them to protect themselves against the HIV virus. The campaign aimed to do this by increasing awareness of, and means to carry out, sexual practices that were safe and healthy. Historically, there had been significant stigma associated with carrying condoms, something that was particularly felt by women who believed it made them seem ‘easy’, or promiscuous.31 Consequently, the role of carrying a condom had historically been delegated to men, yet the contemporary desire to be seen as masculine and invulnerable often led to condoms being deemed an ‘unfashionable’ addition,31 leaving individuals sexually vulnerable. The emphasis of the ‘Take Care’ campaign on the protection of both oneself and sexual partners led to its aim of improving the availability of condoms, whilst at the same time decreasing their negative connotations. Prior to the official launch of the campaign, this was tackled through the installation of 1,400 condom machines in clubs, discos, and places of work throughout 1988.26 This initial push to make condoms both more available and more visible to the public was swiftly followed by the introduction of the ‘C-card’ initiative in 1990 (Figure 4).32 The concept of the C-card was that anyone holding it could pick up both condoms and spermicides without appointment or judgement, free of charge, from any family planning clinic or from the Brook Advisory Centre (a sexual health and wellbeing service).33 The initiative was widespread and available to anyone of any age, gender or sexual orientation, providing a way of making informed and healthy choices easy to follow.34 The C-card itself was sleek in its design: the shape of a credit card and of an inconspicuous colour pallet. It was designed to fit into a person’s normal life and routine in the same way it slipped into their purse or wallet, hence aiming at a perception of normality whilst eliminating stigma. Thirty years later, and still available as a service today, the C-card was a historical stepping point for sexual health promotion, revolutionising the approach of both men and women to sexual health practice.

What does taking care mean to you

As the ‘Take Care’ campaign continued to flourish into the 1990s, there was a shift in the core message of the campaign in 1994 from ‘It’s time to Take Care’ to ‘What does taking care mean to you?’. This change was concurrent with the predicted rise in AIDS cases that Lothian Health Services were expecting33 and aimed at drawing attention to a range of situations that could put people at risk of contracting HIV. Seeking to put more emphasis on individual choice, this phase in the initiative was a chance to reflect on sexual and health practices in order to ensure that individuals were prioritising both safety and respect.

Coinciding with a range of new publications and heath promotional material, the increasing momentum behind ‘Take Care’ encouraged a range of public figures to get involved. Notable collaborations included chart-topping band Deacon Blue, who featured on 6,700 postcards distributed at concerts.35 Noteworthy were also the collaborations with both Hearts and Hibernian, local football teams, involving collectors’ postcards,36 pitch-side advertising, features in match programmes, and an agreement to promote HIV and AIDS awareness within the supporter networks.24 An innovative move, this initiative acted to involve a cohort of the heterosexual male population that had likely not been directly touched by the campaign to date, thus bringing education into a sphere that was relevant to their social and cultural context.

In 1993, as part of the monitoring of the campaign, a quantitative survey was published that assessed public awareness of the ‘Take Care’ campaign.37 Positive findings showed an 83% awareness of the campaign logo, and key promotional materials (1 in 5 people). This positive result reflected the power of the simple yet potent designs. Disappointing, nevertheless, was that the majority of participants reported they believed the campaign offered the option of condoms as the only method of practicing safer sex.

As a result of this misperception, £50,000 was spent in 1994 on furthering the campaign, aiming to highlight that condoms were not the only method of practicing safe sex, and that abstinence was an equally effective tactic.38 Such rebranding intended to solidify the values of the ‘Take Care’ campaign within Edinburgh, whilst newly enforcing the importance of sexual choice and freedom. A new set of materials was produced in conjunction with this focus on sexual choice, with condom packets explicitly asking the question ‘Have you worked out what taking care means for you?’,39 before offering options of refusing intercourse and being faithful to one partner (Figure 5). The evolution of ‘Take Care’ from a campaign that purely tried to enforce safer sexual health practices (via resource provision) to an initiative that encouraged people to reflect upon, and consider what was right for, their own sexual health is one that can consequently be applauded.

Figure 5 In rebranding the campaign, condom jackets were used to focus on sexual choice and fidelity of sexual partners

 

 

The re-gaying of AIDS

Throughout the late Eighties and early Nineties, Lothian Health services’ focus had been fully directed at the restriction of heterosexual HIV spread. However, new evidence suggested young gay men required further education on the risks of HIV and AIDS. US and European research on the spread of HIV through heterosexual intercourse modified predictions that Edinburgh would see patterns of heterosexual transmission seen in Africa.6,40,41 Between 1990 and 1995, a distinct and worrying upward trend appeared in numbers of homosexual men presenting to health services as HIV-positive.41 This was a noticeable statistic when considered in the context of the reluctance of the ‘Take Care’ campaign to provide specific education for this cohort. The heterosexual focus of AIDS public health campaigns had apparently led to a decrease in the association between HIV and the gay community,27 however, rising numbers of positive tests amongst men who have sex with men meant that the focus of safe-sex messages needed to change.

Recognising the weight of the consequences of such a lack of information, SAM launched their pioneering Gay Men’s Project in 1994 – the largest gay men’s educational project that had occurred in the UK to date.43 The Gay Men’s Project took a novel approach to health promotion, labelled ‘community mobilisation’,43 which involved the use of networks of sexual partners, social groups and volunteers in order to reach the gay scene. The purpose of the project was to ensure that gay men were not just passively ‘educated’ but were also ‘educators in their own right’.44 As such, SAM was now progressing from providing information to encouragement to a sense of empowerment, increasing the likelihood of engagement with the campaign.

Another distinct aspect of the project was its delivery. Fun and quirky, the campaign differed from government-produced projects through its jokey, naughty and occasionally explicit language and imagery. Its pamphlet ‘Get ready for action: A gay man’s guide to safer sex’ exemplified this through its bright, colourful, and bold nature.45 Using pictures of ‘Ken’ style dolls in various sexual positions, alongside bold text that included sexually frank and colloquial language, the pamphlet was difficult to ignore. It also invited people to examine it further, hoping to provoke a discussion into the important topic of safe sex through humour. This uplifting and fun outlook was echoed in the volunteers’ handbook. Welcoming Gay Men’s Project volunteers to the most ‘exciting, dynamic and effective Gay men’s initiative in the UK’, the handbook informed volunteers to expect ‘humour, self-respect, glamour, pride, money, talent, invention, more money, more ideas, honest sweat, raunchy sweat and all the pizzazz’.46 By offering a safe space for respect, fun and empowerment, the campaign aimed to both liberate and educate gay men. The Gay Men’s Project was in fact SAM’s last major initiative before their collapse in 1996, as a result of funding issues.47

Edinburgh suffered greatly due to the HIV epidemic throughout the 1980s and 1990s. In response to contemporary statistical reports, it is clear that authorities reacted strongly in an attempt to protect the heterosexual population from disease spread. As a result, the pioneering campaigns produced within Edinburgh, such as ‘Take Care’, were a marked contrast with the negative and aggressive connotations of AIDS-related campaigns elsewhere.

Focusing on a distinct core message, with the aim to provide Edinburgh with positive affirmation and health advice, it is possible to parallel such strategies with the UK Government’s recent public health initiative ‘Stay at home, protect the NHS, save lives’, at the time of the coronavirus pandemic.48 By offering the public digestible changes that have the potential to incite long-term health benefits – whether that be protecting the health service or avoiding infection – these health promotional strategies both aim to mitigate the consequences of a pandemic, whilst offering the public hope for themselves and their loved ones.

Despite the intentions of LHB and LRC when approaching the HIV crisis within Edinburgh, much of the health promotional material produced as part of these campaigns actively ignored important demographic groups, including IVDU and gay men. Notably, despite the huge amount of contemporary legislation and debate that surrounded drug misuse, examination of health promotional material held by LHSA unearthed a distinct lack of representation of drug users – which despite not necessarily being representative of all of Lothian’s health promotional strategies – is a significant finding. Equally, LHB campaigns acted to bypass the education of the homosexual community, consequently leaving voluntary sector bodies such as SAM to provide adequate resources.

Conclusion

This paper has focused on health promotion and legislation targeting the heterosexual, homosexual, and drug-using communities in the face of HIV in the 1980s and 1990s. It has not included important information regarding the approach to, and the roles of women, haemophiliacs and children in relation to the virus in Edinburgh. Future studies may wish to investigate the roles of such demographic groups, the steps taken to protect them, and health promotion activities aimed at them.