Should people with HIV be in charge of HIV prevention? asks Gus Cairns
Something isn’t working in UK HIV prevention. An increase in African cases here has masked a 35 per cent rise in the annual total of gay men infected, and each year more heterosexuals in the UK become infected too. It seems messages fall on deaf ears. In this era of HIV treatment perhaps we need a much more nuanced message than ‘condom, condom every time’.
Who should run prevention?
One radical idea is to turn a large part of HIV prevention work over to HIV
positive people. Some may see this as silly, like putting Dracula in charge
of the blood bank. But if you look at it another way, HIV positive people
are exactly the people who should be directing the fight against further HIV
transmission. Because we represent the failure of safe-sex campaigns, we’re
better placed to suggest what might work. Because we are the people who pass
on HIV, we are better placed to devise ways of not doing so. And because we’re
the people who get blamed, it’s probably politically savvy to demonstrate
that we’re trying not to.
Our voices, ourselves
PN decided to canvass opinions on this topic on the UKC’s Positive Voices
discussion board and at UKC’s Midweek gay men’s group.
HIV prevention was generally perceived (rightly or wrongly) as a lot of HIV
negative gay men telling HIV positive men what to do. ‘Flip’ on
Positive Voices said he felt unsafe disclosing his status at GMFA assertiveness
and stop smoking courses. Midweek member Steve, a GMFA volunteer, defended
the organisation’s ‘+ve’ campaign and a new campaign promoting
‘pulling out before coming’ as a risk-reduction strategy for positive
men. But others felt unrepresented by the imagery in safer-sex campaigns.
Flip said: “I have stood many a night right under a health promotion
poster. I look healthy, willing and able to have a good time. I know the person
beside me assumes I am not positive. Shortly afterwards we go off together.
These campaigns don’t speak to me - or to him.” Natasha, the only
woman replying to the Positive Voices thread, said mass media campaigns were
still important to people like her, who were always assumed to be negative
or were expected not to have sex.
“As a positive person, I can take some responsibility. People with HIV
should certainly have input into prevention messages. But messages have to
go out to everyone in society. It’s not that GMFA-style ads don’t
work. It’s that they’re not in the straight magazines.”
Sero-sorting men from boys
Growing evidence suggests that poz guys do care about spreading their virus
and already devise their own safer-sex strategies. A recent survey of 217
young HIV positive US gay men found they had plenty of unsafe sex. But they
were overwhelmingly more likely to do it with another HIV positive partner
than someone HIV negative or likely to be. This phenomenon is called ‘serosorting’:
having unprotected sex but trying to do it with someone of your own HIV status.
The study authors were impressed. “Interventions should reinforce the
altruism that young men with HIV feel towards their partners,” they
said.
Difficult disclosures
This strategy, however, depends on knowing your partner’s status. Disclosure
is all, but it’s incredibly difficult. A recent GMFA survey found 40
per cent of poz guys never disclosed, 40 per cent would if the other guy did,
and only 20 per cent disclosed routinely.
Why? Rejection, that’s why. Eduardo at the Midweek Group said: “The
gay scene is very sex-driven. You can lose all your sense of value if you
get rejected because you’re positive.”
‘Partisan’ on Positive Voices argued that people who were unaware
they had HIV needed the messages most. But this assumes once people know they
have HIV, they will always tell. ‘Flip’ said: “Getting positive
people to disclose, so negative people can run away is not a solution. One
more rejection and positive people won’t bother disclosing again.”
But he agreed disclosure could be empowering: “If a guy knows you are
positive from the get-go you are both less likely to make a mistake.”
Andy Hewlett, an HIV positive policeman and guest speaker at the Midweek group
was there talking on the criminalisation of HIV transmission, which may become
a compelling reason to disclose: if you tell the truth from the start, no
one can accuse you of ‘recklessness’ or say they didn’t
‘consent’.
Codes, loads and drugs
Several Midweek members shared tips for trying to discover their partner’s
status, or revealing their own, in ‘coded’ ways: checking whether
your partner’s car is a Motability car; poking around into his medicine
cabinet to find his meds or wearing biohazard tattoo or some other sign.
Andy said some well-informed negative guys were aware that you were quite
unlikely to be infectious with a low viral load, and asked if you were ‘undetectable’
or ‘on the meds’. Unfortunately, an Amsterdam survey recently
found people often had an inaccurate idea of their viral load. And one in
eight may have HIV in their cum or their bum, even when it’s not in
their blood.
Brian from Positive Voices thought campaigns should also target alcohol and
drug consumption. He said: “I didn’t do the shagging around...But
I did the drugs and drank, drank, drank, and that condom must have slipped
off one drunken night.”
Everyone agreed that low self-esteem was an issue for HIV positive and HIV
negative guys. Paul from Positive Voices said: “When I was a young,
crazy, randy guy with low self-esteem, I recklessly put myself at risk.” John pointed out that HIV prevention campaigns failed to address the fact
that people in general preferred unsafe sex.
All felt that if an HIV campaign was clearly ‘owned’ by positive
people you could give out ‘tough’ messages that would be cruel
or discriminatory coming from a negative-run organisation. John at Midweek
said: “HIV dis-empowers you and it can make you a less reliable, effective
person. Only we as HIV positive people can say that without being accused
of prejudice. We’ve been there.”
Everyone agreed the confidence to disclose and protect your partner did not
happen overnight. Andy said it took him 10 years to feel confident.”
Paul said: “HIV prevention on a personal level can only ever be about
making mistakes in sex and relationships, going away, relearning. Those mistakes
may include passing on HIV. That’s why the law’s such a blunt
instrument.”
Our spaces, ourselves, our lives
Is there a way that positive people can protect others from HIV even before
acquiring that hard-won ability to disclose? One way could be for HIV positive
people to set up social spaces where everyone is known to be poz anyway. Not
support groups, but places where people can go to have fun - and even sex.
There is such a place in London, at least for gay men. It’s called Pigpitmen,
I don’t mind admitting I’m member no. 0023, and next month David
Taylor will tell you all about it. Stay glued...
Will Nutland, head of gay men’s health promotion at THT says:
Of course people with HIV should be involved in every aspect of HIV prevention.
But surely the real issue is that it is done by people with the right skills
and knowledge, including people with HIV. Not only is it good practice and
common sense but it makes for a better intervention.
Most national gay men’s prevention work is put together and delivered
by gay men with HIV. But it’s the range of skills involved that makes
a good campaign. Having HIV brings an additional experience that enhances
those skills for good prevention work.
Most discussions about HIV prevention falls back into debate about safer sex
campaigns: posters and ads in the gay press. But if prevention was just about
designing posters we could all pack up and go home tomorrow.
Where people with HIV could make the biggest difference is by asking tough
questions about why funding for targeted prevention has not increased despite
more gay men living with HIV than ever before, or why young gay men do not
get proper sex education and are leaving school without even basic knowledge
about HIV.
