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Stigma Campaign
HIV is still a strongly stigmatised condition, and unfortunately the people most likely to condemn people with HIV are often members of the most-affected communities, Michael Ratsey discovers.
Thanks to medical advances, those infected are predicted to have long fulfilling lives. But in spite of efforts by politicians, professional bodies, charities and some of the media, huge stigma and consistent discrimination still exists towards people who are HIV–positive.
UN Secretary-General Ban Ki Moon has said:1 "Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world"
In recent years there has been a move to normalise HIV in the UK, with a frequent comparison to diabetes or other chronic health conditions. Yet diabetes is not a condition people fear to disclose, make elaborate attempts to conceal, or are prosecuted for transmitting. When it comes to disclosure no other medical condition causes such personal debate and inner conflict, from telling friends, families and potential partners or to filling out forms for job applications, benefits and fostering children. Stigma impacts negatively on much of what HIV-positive people plan in life, quite apart from tackling the virus itself and the effects of medication.
Stigma also interferes with attempts to fight the HIV epidemic as a whole. On a national level, the stigma associated with HIV can deter governments from taking fast, effective action against the epidemic, because they don’t want to address the needs of or even acknowledge the existence of stigmatised groups like gay men, injecting drug users and sex workers.
The necessity to address both stigma and discrimination is important in meeting the needs of people with diagnosed HIV infection. HIV-related stigma significantly alters the way they are viewed and in turn the way they view themselves, and self-stigmatisation is common.
Stigma is more subtle in the post-AIDS days and may therefore be more dangerous – based less on the fear of the illness and more on the disapproval of the type of person who is seen to have HIV.
Does this mean it comes entirely from the sections of society which are mostly untouched by the virus, where perhaps ignorance could be an attributing factor? Or does it also operate within the communities where HIV is an integral part of life? Does stigmatisation exist within the gay community, or in the Black African community? The answer, sadly, is yes. Various pieces of evidence show HIV-related stigma in the UK to be increasingly and alarmingly black, and gay.
In response to a Youtube video made by Cass Man, the founder of Positively Healthy UK, and one of the world’s longest-term HIV-Positive diagnosed gay men, now in his third decade of living with HIV, one viewer commented:(2)
‘I, as an HIV-positive gay man, have experienced more HIV stigma and discrimination from other gay men than from any other members of human society. These HIV-negative gay men treat me as if I was a piranha in their goldfish bowl and a ghost at their banquet…..’
How and why do our communities fail to support us?
HIV is still predominantly a gay and black African problem. In both groups disclosure can leave people vulnerable to real and imagined harm even from within their own culture.
According to the 2008 Health Protection Agency report, in the previous year 55% of all new cases of HIV in the UK were heterosexual, and 41% were men who had sex with men. Over three-quarters of the heterosexual cases were infected abroad, of which two thirds were from sub-Saharan Africa.
One way stigma has operated is because, often paradoxically for fear of causing offence, HIV was treated as if it affected everyone equally. In the 1990s activists from both main HIV communities argued that by burying the true figures and mislabelling the crises, the government and its HIV experts had exacerbated the epidemic and increased the stigma.
In 2005 Dr Barry Evans, Britain’s leading HIV epidemiologist at the government’s Communicable Disease Surveillance Centre, was quoted in a Guardian article(3) “We have shied away from telling the explicit truth about those at greatest risk from the virus for fear of how it can be manipulated by racists and homophobes.’
Evidence of stigma within the gay community
Some of the less obvious findings coming out of a 2009 Sigma Research paper on criminalisation of HIV transmission make for very disturbing reading.(3) Couched within the responses is an unexpected stigmatisation by gay men towards HIV-positive gay men.
Overall, 57% of gay men supported the prosecution and imprisonment of people with HIV who had recklessly infected a sexual partner with the virus. Men who had never been tested for HIV were the group most likely to support the use of the criminal law in this way. Many held strongly stigmatising views about HIV and appeared to have little appreciation of the effectiveness of HIV treatment.
The majority of men supporting imprisonment provided information explaining why they held this position. The harm caused by HIV transmission emerged as the major factor why individuals supported prosecution. Many respondents emphasised the risk of death that they perceived as resulting from infection with HIV. Some individuals equated the transmission of HIV with murder.
“These responses reveal the perception that there is little capacity for living well or longevity among people with diagnosed HIV”, write the researchers, “getting HIV is regarded as utterly disastrous.” There was little appreciation of the effectiveness of HIV treatment.
Those who supported imprisonment viewed the responsibility of preventing HIV transmission as being vested solely with the HIV-positive partner. As one HIV-negative man from southern England wrote, “once you contract HIV it is your responsibility to ensure that you do not transmit it.”
By contrast, men who opposed imprisonment often believed that the responsibility to prevent HIV transmission should be shared between partners. Many expressed the opinion that such action only served to increase the stigma and discrimination surrounding HIV. “Living with the virus is bad enough without locking people up who have it”, wrote a 33-year-old man with HIV from the English Midlands. He noted the exceptional way that HIV was treated by the criminal law, “we do not lock up people who pass on colds, flu or even more serious viruses. The approach of the courts/CPS is another example of prejudice towards HIV sufferers.”
The researchers believe that the findings of the report have important implications for HIV health promotion. They note that “the perception that HIV equals certain death helps to maintain the stigma related to HIV, which in turn, negatively impacts on the environment in which prevention interventions occur.”
Stigma and unsafe sex
Because HIV–positive men fear reaction from disclosure, they may seek out sexual situations where they are not obliged to disclose, which makes them feel less guilty about not disclosing. Another Sigma Research survey, for instance, found that gay saunas were conceived to be HIV–positive safer spaces by a lot of positive men.(5,6)
The researchers argue that men’s concerns about rejection and stigma shape the way they manage risk. Men’s instinct for self-preservation often led them to choose behaviours where disclosure was felt to be unnecessary.
For example, many men used saunas, not just because sex was readily available, but also because the men assumed that almost all other sauna users were HIV-positive. In some settings, some men tried to avoid disclosure but maintain their sense of moral integrity by suggesting to sexual partners that it would be a good idea to use a condom. Nonetheless one man described how these suggestions prompted one sexual partner to ask directly whether he had HIV. When he said yes, the man became angry and left.
In their conclusion the researchers note several consequences of HIV-related stigma including a reluctance to disclose and an encouragement to have anonymous sex;, and some interviewees' rejection of other HIV-positive men and their behaviour.
Another form of implicit disclosure that men tried was ticking ‘safer sex needs discussion’ on a Gaydar internet profile. Few men explicitly advertised their HIV status on their profile, but might mention it during private instant messaging. Normally, HIV-positive men look for clues in other profiles. An ad-hoc survey in late March examined the profiles of 200 UK men using the ‘HIV cruising room’ on Gaydar, theoretically a safe environment. The findings revealed nearly 60% gave no clue at all of an HIV diagnosis; and only 14% stated it. The remaining quarter couched a possible HIV-positive diagnosis under the sexual preference categories of ‘rather not say’ or by ticking the ‘safer sex needs discussion’ box, when presumably the majority of men using this chat room were looking for an HIV positive partner and were probably HIV–positive themselves.
The few brave enough to disclose directly in their profiles often take an aggressive slant in a follow up sentence; “I'm HIV-positive – and if you can't cope with it then look elsewhere!” This may be a reaction to other profiles that say things like ‘I am clean and HIV negative and expect the same’.
Barebacking –explicit self-identification as a gay man who doesn’t use condoms - may be a way HIV positive men try to make serosorting – restricting unsafe sex to people with your own HIV status - sexy, without explicitly mentioning HIV. Elford et al(7) did note that rather than promoting 'barebacking', the internet ‘seems to facilitate serosorting’ and ‘barebackers will be over-represented in an internet sample.’)
The problem is that it’s a code that’s not always understood, and research has revealed that HIV negative men often rationalise the risks of barebacknig by believing that if someone was HIV positive, they would use a condom – the opposite of what the HIV positive person intends to convey.(8). However for a minority of HIV-negative men risk-taking may heighten the intensity of the sexual experience.
HIV is not the only infection that can stigmatise gay men. An increasing number of HIV-positive men are also becoming infected with hepatitis C too (see HTU 185, April 2009). In a small survey of six co-infected men they all felt stigmatised by their own community. Furthermore a Hep C diagnosis can leave greater feelings of shame, guilt, and ‘dirtiness’ as it is not ‘owned’ by the gay community in the way HIV used to be, and is therefore even more marginalised and stigmatised.(9)
Stigma within the African and Caribbean communities
Winnie Ssanyu-Sseruma, ex-chair of the African HIV Policy Network, says that many Africans in UK have two lives, their UK lives and their ‘back home’ lives where their families and often children still reside. People don’t necessarily want to be open in both arenas.
A 2007 study found that although African people account for the greatest number of new HIV diagnoses in the UK - now in excess of 8000 - many African people are failing to come forward for testing or to access health services.(10) Indeed, two thirds of Africans living with HIV in the UK have never tested for HIV and so do not know their status. A 2008 study(11) found black heterosexual HIV-positive men (33%) and women (40%) the least likely group to tell others about their status, including new partners.
What is holding people back from disclosure? Some of this may be of perceived stigma from within their own communities, much of this being historical in origin and coming from two main directions; religion and the family culture. AHPN are aware that in the UK Africans with HIV get stigmatised not only from general society but from the African community itself, which leads to low self-esteem, social marginalisation and breakdown of relationships.
The HIV crisis in black African Britain was visible as far back as 1995 and unsure of the public health implications of HIV positive people settling in Britain, the government left it to Pentecostal churches and lay pastors to deal with the problem. Their response was often to prohibit the use of condoms and rely on prayer.(3)
The African community is not the only UK black community that may suffer from actual or perceived stigma. A 2008 study(12) found that HIV–positive people of Caribbean descent were keenly aware of HIV-related stigma in their communities. Respondents in the survey often expected to be treated like lepers, had experiences of enacted stigma such as excessive cleansing of household objects and family exclusion. Similar situations were recorded by the same researchers within the African community a few years earlier:
‘My wife started calling me names. She took the phone, she rang [names an African country], she rang my mom, she rang her parents and she said that she cannot stay with somebody that is AIDS’ - HIV positive African man living in the UK(13)
‘Even now it is very hard to tell somebody I am sick, because like our community they take it as a curse, or like you misbehaved or went out with somebody, like they take you as a prostitute, it is an attitude which is very bad…’ - HIV positive African woman living in the UK.(14)
HIV was also associated with sexual behaviour regarded as immoral, including promiscuity, prostitution and above all, homosexuality. Religion had a strong influence on the perception that ‘sinners’ contracted HIV as a form of punishment.
What now?
HIV campaigners including The British Red Cross have urged the need to tackle the problem of stigma on several fronts and The Department of Health have been committed to publishing an HIV stigma action plan since 2002.
There have also been various campaigns such as the ‘Changing Perspectives’ campaign launched by AHPN(15) to encourage faith communities, the media and the government to address HIV-related stigma and discrimination. A media watchdog group, Press Gang, has been set up by the National AIDS Trust,(16) encouraging people with HIV to pounce on overt or covert stigmatisation in media coverage of HIV. NAT also worked with the National Union of Journalists to produce guidelines on reporting HIV to help journalists ensure the articles they write are not misleading and do not encourage negative perceptions about HIV.(17) Journalists need to be encouraged to report on the human stories behind living positively with HIV rather than always perpetuating the stigma that exists around it.
Likewise it would help if all religious and faith leaders talked about HIV in a positive way and gay internet contact sites took a stronger line on negative references and implications about HIV and people living with it.
As Winnie Ssanyu-Sseruma wisely says, ‘as individuals we have to look from within, deal with our own demons, be comfortable in our skins, ask ourselves what we are afraid of, learn not to be apologetic and as far as possible not be a burden on society’.
The good news is that there are many who readily disclose and have never met with stigmatisation from anyone in their community. Being positive about being positive, being radiators of rather than drains on support, is an attractive characteristic and may show that much of the stigma is imagined and the vast majority of our ‘family’ members are actually on our side. UK African HIV organisations have consistently taken this line in recent years and in campaigns such as Changing Perspectives, have trained up people with HIV to be community spokespeople, realising that there is nothing that better neutralises stigma than the presence of an authoritative and confident HIV positive person talking about their status. There’s even a study which shows that disclosure is an independent predictor of higher CD4 counts – being open about HIV is good for you.(18)
When confronted by a personal dilemma it is human nature to seek out support and empathy which is why self-help groups composed of kindred spirits are so valuable. There is safety in numbers, and if necessary the voice is louder.
Generally speaking HIV–positive people gain strength from other HIV–positive people and there are various agencies and ways to assist them from websites like HIVmatch.co.uk, www.plus-friends.com and Positive.eu.com to community organisations like GMFA, Positive East, AHPN and many more. We can find our brethren.
References
(1) See www.avert.org/aidsstigma.htm
(2) See www.youtube.com/watch?v=7C-pTliMoRs
(3) Scott-Clark C and Levy A. “Where it's really hurting”, The Guardian, 10 September 2005. See www.guardian.co.uk/world/2005/sep/10/aids.adrianlevy
(4) Dodds C et al. Sexually charged: the views of gay and bisexual men on criminal prosecutions for sexual HIV transmission. Sigma Research, 2009.
(5) Adam BD et al – Silence, assent and HIV risk . Culture, Health & Sexuality 10(8): 759-72. 2008.
(6) Bourne A et al. Relative Safety II : risk and unprotected anal intercourse among gay men with diagnosed HIV. London: Sigma Research 2009.
(7) Elford J et al. Barebacking among HIV-positive gay men in London. Sexually Transmitted Diseases 34(2): 93-98.
(8) Ekstrand ML et al. Gay men report high rates of unprotected anal sex with partners of unknown or discordant HIV status. AIDS 13(12):1525-33. 1999.
(9) Owen G. An ‘elephant in the room’? Stigma and hepatitis transmission among HIV-positive ‘serosorting’ gay men. Culture, Health and Sexuality 10: 601 – 610, 2008
(10) Panos London and AHPN Start the press: How African communities in the UK can work with the media to confront HIV stigma. November 2007. Available from the Panos website.
(11). Elford J et al. Disclosure of HIV status. The role of ethnicity among people living with HIV in London. J Acquir Immune Defic Syndr 47: 514 – 521, 2008.
(12). Anderson M et al. HIV/AIDS-related stigma and discrimination: accounts of HIV-positive Caribbean people in the United Kingdom. Soc Sci Med. 67(5):790-8. 2008.
(13). Doyal L et al. ‘‘I want to survive, I want to win, I want tomorrow”: an exploratory study of African men living with HIV in London. Terrence Higgins Trust, 2005. See www.tht.org.uk/Content.aspx?ciid=11482 .
(14) Doyal L et al. My heart is loaded: African women with HIV living in London. Terrence Higgins Trust, 2003. See www.tht.org.uk/Content.aspx?ciid=3739
(15). See www.ahpn.org/about/AHPN_AR05.pdf
(16) See www.nat.org.uk/Living-with-HIV/Help-nat/Join-press-gang.aspx
(17) See www.nat.org.uk/News-and-Media/Influencing-the-media.aspx
(18). Strachan ED et al. Disclosure of HIV status and sexual orientation independently predicts increased absolute CD4 cell counts over time for psychiatric patients. Psychosomatic Medicine 69: 74-80, 2007.
