HIV prevention in the UK, its campaigns and images developed for gay men, has had to change in response to a new community with parallel – but – different needs. Gus Cairns investigates.
Henderson Mmangisa, outreach worker for the Centre for All Families Positive Health, Luton’s African HIV support agency, is taking me around a world that has always been on my doorstep. I’ve just never stepped through its door. Henderson is its Condom Man.
High Town Road is one of those areas, which often fringe town centres, where the most recent wave or two of newly arrived cultures to the UK have set up shop. We wander down the narrow street dropping off bags of condoms and proffering information leaflets at barbers’ shops, money exchanges, small food stores - but not the pub, which has refused his free goods. Reception varies from the familiar (“Yeah, we’ve run out. Just put them on the shelf by the door”) to the nervous (“I’ll have to ask the manager”).
If you do HIV prevention work you become hyper-aware of the sexual undercurrents that permeate any city scene. Who will use our goods over the next week? The two boys glancing back at the busty girl? The young men admiring their razor-cuts in the barber’s mirror?
Who is the ‘UK African community’, anyway? Are its members really at risk of HIV? And if so, are they getting the right kind of help to avoid it?
The last census in 2001 estimated that there were about half a million people in the UK who were born in Africa - not the same as the number of African ethnicity - and the Home Office estimates that during the first half of this decade there was a net inflow of around 66,000 people from Africa every year.1 This inflow has slowed since then: the more recent BASS Line survey2 found that 4.4% of its respondents had been in the UK less than a year, which would imply about 25,000 new arrivals.
The Health Protection Agency (HPA) estimates that 4.9% of UK Africans – one in 20 – has HIV, of which 25% are undiagnosed (22% of women and 30% of men).3
This is over 30 times higher than HIV prevalence in the general population, and about the same as prevalence in gay men outside hotspots like London, Brighton and Manchester.4 So at the very least, one might expect rough parity between the amount spent on HIV prevention in Africans and gay men. In fact, CHAPS, the gay men’s HIV prevention partnership, got £1.7 million from the Department of Health last year, but NAHIP, the National African HIV Prevention Programme, only got £750,000, plus another quarter-million for managing the African AIDS Helpline.
Are Africans transmitting and acquiring HIV at the same rate as gay men? The HPA estimates that the number of Africans in the UK with HIV has been increasing by about 3400 a year, but also that four out of five of these infections are brought in from Africa and only 700, one in five new infections, are caught within the UK. Although this is not an insignificant number it still represents only about a half of the number of infections caught in the UK by non-African heterosexuals.
This figure could be wrong. Community-generated surveys like Mayisha 2 in 20055 and BASS Line, which recruited over 4000 people of African ethnicity in 2007, find much higher HIV prevalence rates: 14.4% in Mayisha and 15.5% in BASSLine – as high as HIV prevalence anywhere globally, except southern Africa. However these surveys may have over-recruited from higher prevalence communities, in the case of BASSline via HIV agencies, so are more likely to have been answered by people already with HIV, and at risk of HIV.
The HPA’s Brian Rice says: “The assignment of place of infection is difficult and open to a number of biases. Some clinicians do a good job assessing this. Others may cut corners and assume that if someone was born in Africa and hasn’t been in the UK long, they must have caught HIV in Africa.”
In certain places new HIV infections may be occurring at a much higher rate in the UK. Rice adds: “London data indicate that approximately 30% of African born people diagnosed in London in 2007 possibly acquired their infection within the UK.”
The HPA’s unpublished data is backed up by a study by Fiona Burns from the Centre for Sexual Health and HIV Research at University College, London.6 They estimated that between 25% and 35% of their subjects had acquired HIV in the UK, which would indicate about 1200 new infections a year in the UK.
Burns comments: “The absolute number of new HIV diagnoses in Africans may not increase further, but the proportion infected here probably will.
“HIV is invisible over here to a lot of the African community,” she adds. “I continue to encounter patients who tell me ‘I thought I was the only positive African here’. There is a very high awareness of HIV in general, but somehow it doesn’t translate into an appreciation of personal risk.”
It does appear that a lot of UK Africans believe that they left HIV behind when they left Africa. The BASSLine survey found that a majority of its respondents – 53% - had never had an HIV test (compared with 38% of UK gay men7) and when asked why they hadn’t, seven out of ten said it was “because I’ve no reason to think I have HIV”. Half of those who had never tested thought they were “definitely negative” and one in five who had tested positive had doubts about whether they actually had HIV.
Some UK Africans may be more likely to acquire HIV than they think. A third of respondents to BASSLine had been diagnosed with a sexually transmitted infection, one in 10 in the last year. One in eight men (but only one in 18 women) had had more than five partners in the last year, and nearly half of men had and a quarter of women had at least one sexual partner in addition to their main partner.
A third of men and a quarter of women reported ‘always’ using condoms over the last year, but a fifth of both sexes reported ‘never’ using them. Over a third of people who answered the survey (38%) felt they were not in control of whether they became infected with HIV, and the impact of stigma came through in the finding that 30% of people “would worry about what people thought of me” if they carried a condom.
One finding of qualitative surveys on African women with HIV8 and heterosexual men9 is how important the church is and remains as a source of strength and support for Africans with HIV. One woman said:
“It is only in church that I feel really integrated, because you know there is one common ground for girls and boys that have problems. I feel good about myself for a change. It makes me feel better.’
However these surveys also found that some people had experienced rejection and ostracism from their local church, or feared it.
NAHIP conducted a survey and series of workshops with Christian faith leaders and congregation members in 2007-8. The report on these workshops, Faith and HIV in Action, makes interesting reading.10 Only a small proportion of people in the survey expressed punitive attitudes towards people with HIV such as “HIV is nearly always contracted as the result of ‘sinful’ sexual relations” (80% disagreed) and “HIV/AIDS is punishment from God for sin” (84% disagreed).
But strong beliefs were also expressed that HIV is curable with the help of God. Only just over half of respondents agreed that “There is no cure for HIV infection once someone has it,” and three-quarters believed that “There are people who have been cured of HIV/AIDS by the power of prayer alone (i.e. without medication)”. In the workshops, the report adds, one participant insisted he had been cured by God.
On the other hand, no one thought that people who took HIV medicines had “a lack of faith in God.”
On the 16th June 2009, the AHPN, as part of the NAHIP programme, launched two faith tool kits-Breaking the Loud silence for Christian faith Leaders and Life and Knowledge for Muslim faith leaders as part of the Changing Perspectives anti-stigma campaign.11
One of the most intriguing findings in the BASSLine survey was that a high proportion of African men reported having sex with other men, but still considered themselves heterosexual. Fifteen per cent of men who answered the survey reported sex with men over the last year, two-thirds of them with both men and women and one-third with men only. Fiona Burns estimates that half of the men who have sex with men who had HIV acquired it in the UK.
Yet despite having sex with men, 58% of men who also had sex with women, and even 12% of men who only had sex with other men, reported that they were exclusively attracted to women. How can that be?
Titise Kode, Chief executive Officer of the African HIV Policy Network (AHPN), says: “It’s all about stigma and self-loathing. In African culture you have to be a MAN and you have to have a woman and have kids.
Jabu Chwaula, NAHP’s Programme development Officer, adds: adds: “People’s social support may consist of places where it’s simply impossible to be a ‘gay man’. It’s a mistake to think people become less African just because they come over here.”
During my rounds with Henderson in Luton, we passed a couple of gay pubs and I asked him if any openly gay men had approached CAFPH for help and support. He could only recall one, and seemed very impressed by the man’s courage or foolhardiness in coming out as gay at all: “He had just been diagnosed, and really didn’t know where to go for help at all,” he said. He personally didn’t know who ran gay HIV support services in the town12. This reinforces a finding by a qualitative survey from 200613 that African MSM currently fall through the gap between gay and African HIV prevention programmes.
What HIV prevention help has been provided to the UK African community? Historically, voluntary-sector HIV services have been split between a high number of small local agencies, and NAHIP has 23 current partners in contrast to the gay men’s programme, CHAPS, which has nine.
NAHIP has overseen three major programmes.
Ibi Fakoya has been working at the Centre for Sexual Health and HIV Research and wrote the evaluation reports on NAHIP’s campaigns.
The report on Better to Know found that the campaign was too rushed, that workers were only trained on implementation halfway through the campaign, and that minor partners in the campaign didn’t feel consulted. As a result of this Beyond Condoms was mandated by the Department of Health to develop its message by means of a painstaking series of consultations with all partner agencies. Because of this there were “significant delays in the formative and development stage”, which was supposed to take six months but in the end took 18.
The report comments that the central message of the campaign was subject to “Campaigning by committee…issues that appeared finalised in one meeting would be subject to scrutiny in the next, with seemingly no single organisation having a definitive final word.”
The message was at the start of the campaign intended to be bold and innovative, questioning penetrative sex as the only kind of worthwhile sex; abstinence was to be mentioned as a valid choice as was oral sex and masturbation. In the end, however, users felt that “the messages being used were not new and were not challenging”, and that it was ironic that “While the finalised materials did contain a consistent message, this message was quite simply ‘Use a condom’”.
Nonetheless, Beyond Condoms produced a significant and permanent doubling in the number of calls to the African AIDS Helpline.
The report on Do it Right is soon to be published, and despite the campaigns’ different feels and messages, Ibi Fakoya comments that certain themes stand out. She questions the assumption that there members of the African community have the same needs and that therefore one message needs to be addressed to them. “Specific messages need to be tailored to specific needs,” she says.
She urges more sophisticated research be undertaken to see if campaigns are actually making an impact: “Documenting an increase in calls to the African AIDS Helpline is very distant from making a difference to HIV infections. There should at least be an element of ongoing behavioural research built into every campaign.”
Jabu Chwaula agrees that within the community people will have very different needs according to their age, sexuality, religious beliefs, HIV and socioeconomic status.
“We need to stop saying ‘Here’s a group of Africans – let’s throw an HIV intervention at them,’ he says.
He adds that in the next few years AHPN’s priorities will be to strengthen their work with faith communities and on gender issues.
They would also like to run a multi-year testing campaign, though Titise Kode warns advocates who are currently urging the adoption of early HIV treatment as a prevention method not to ignore the concern that having pills lying around will force a person to disclose their HIV status. “People have needs other than protection against HIV,” she warns, “including enjoying the support of their local community.”
“If you’re an undocumented migrant,” she adds, “this becomes even more crucial because you can’t go to social services and demand that they meet their obligations – you HAVE to rely on informal networks.”
Burns comments that “Doing prevention work in a non-stigmatising way is really important. Africans often want HIV prevention messages to be universal and not to focus on them as such. They don’t want to be seen to be targeted, and aiming HIV prevention messages at Africans in general may simply fuel stigma.
“Interventions with limited budgets will need to use more innovative means of addressing groups at higher risk.”
I asked Fakoya what she would do for the African community if money were no object.
“I’d invest in trying to adapt group workshops that had had proven efficacy in the USA.” One is a workshop series called Project SAFE14, a three-session workshop for African-American and Mexican women that achieved a 30% reduction in STDs (a lot for a behavioural intervention).
“It would cost money,” adds Fakoya. “Messages would have to be tailored for UK Africans, and you’d need to train facilitators to a high level of skill.”
And given current funding levels? “Essentially, fewer mass-media interventions.” She thinks that NAHIP and its partners have done an excellent job actually accessing members of the African community: “Their figures on contacting recently-arrived people are impressive.” As a result she feels that big mass-media campaigns in papers like the African Times are unnecessary. “Africans love to talk together, and what you do is build on a sense of local community and solidarity.”
AHPN mentions this as a specific value in its campaigning. “Ubuntu,” says Jabu Chwaula, “is a word in southern African languages that means ‘I am who I am because of other people,’ – or to use the English quotation, ‘No man is an island’.” It’s about nurturing the African sense that you are dependent on the dignity and respect others accord you - and that you in turn extend dignity and respect to them.” Whether Ubuntucan be harnessed as a way of helping Africans stay safe from HIV remains to be seen.
1. From The Knowledge the Will and the Power: A plan of action to meet the HIV prevention needs of Africans living in England. Sigma Research, ISBN: 1 872956 93 9. 2008. See www.nahip.org.uk/downloads/319.pdf
2. BASS Line 2007 survey: Assessing the sexual HIV prevention needs of African people in England. Sigma Research, ISBN: ISBN: 1 872956 92 0. 2008. See www.nahip.org.uk/downloads/376.pdf
3. Health Protection Agency. HIV in the United Kingdom: 2008 Report. HPA, December 2008.
4. Williamson L et al. HIV prevalence and undiagnosed infection among community samples of gay men in the United Kingdom: five city comparison. Sixteenth International AIDS Conference, Toronto, abstract MoPe0517, 2006.
5. Mayisha II main study report: Assessing the feasibility and acceptability of community based prevalence surveys of HIV among black Africans in England. 2005. See www.ahpn.org/downloads/publications/Mayisha_II.pdf
6. Burns FM et al. United Kingdom acquisition of HIV infection in African residents in London: more than previously thought. AIDS 23: 262-6, 2009.
7. Sigma Research. Multiple Chances: Findings from the United Kingdom Gay Men’s Sex Survey 2006. Sigma Research, 2009. ISBN: 1 872956 94 7. See www.sigmaresearch.org.uk/files/report2008c.pdf
8. Doyal L and Anderson J. My Heart is Loaded: African women with HIV surviving in London. Terrence Higgins Trust 2003. See www.homerton.nhs.uk/uploaded_files/R_D/myheart584.pdf
9. 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 2006. See www.homerton.nhs.uk/uploaded_files/R_D/iwanttosurvive.pdf
10. Fakoya I, Faith and HIV in Action - A training workshop for Christian Faith Communities. Evaluation Report. London: UCL Centre for Sexual Health and HIV Research, 2009.
11. See www.nahip.org.uk/newsandevents/index.php?page_id=224
12. Gay men’s HIV services in Luton are provided by the Men4Men Sexual Health Outreach Project – see www.gay-bedfordshire.co.uk
13. Doyal L et al. ‘I count myself as being in a different world’: African gay and bisexual men living with HIV in London. Homerton University Hospital NHS Foundation Trust, 2007. See www.homerton.nhs.uk/uploaded_files/R_D/african_men_hiv_report.pdf
14. See www.cdc.gov/hiv/topics/research/prs/resources/factsheets/SAFE.htm
