HIV prevention campaigns need to adapt to
reflect the way we, as HIV positive people, use our sexual health services,
argues Stephen Bitti, UKC’s chief executive
Image C(Aitch)
Are
our sex lives back on the agenda? It seems they could be, and there’s
little doubt they should be. By ‘we’,
I mean people living with HIV who know they’re infected and by sex I
mean everything from STI treatments and sexual dysfunction to relationship
counselling, via the bareback debate and reproductive health and rights along
the way. But have the sexual health and HIV industries yet captured the full
significance of HIV positive people’s sexual health? UKC has played
some small role to date, but this role is likely to expand as we continue
to expand our role as a leading voice of people with HIV in the UK.
Who’s in charge?
It is exactly a year since Gus Cairns posed the question: “Should people
with HIV be in charge of HIV prevention?” in this magazine (issue 110).
This was intentionally a pretty broad and open-ended question, and as intended,
reached some broad and pretty open-ended conclusions. Among the main questions
left without an answer were: ‘HIV prevention aimed at who?’ and
‘What do we mean by ‘in charge’?’ These are two main
themes in the debate, and an understanding of one is essential to grasp the
other.
Gus’s article stimulated fresh debate on a subject that, over the last
decade, has drifted on and off the prevention and treatment and care agendas.
This debate achieved a new focus in December 2005 when the National Aids Trust
hosted a one-day event at the Diana Memorial Trust HQ, in London. It was an
interesting day, not least because of people’s different perspectives
on what has been done in the past, what is still current and where to go next
to consolidate the sporadic successes in “positive prevention”.
High points in positive prevention
Here’s a quick summary of the groundbreaking work done to-date:
1996: CHAPS (Community HIV Action Prevention Strategy) partnership
created to improve gay men’s HIV prevention work, with a specific partner
agency required to bring the voice of HIV positive gay men to the partnership.
The now defunct National Network of HIV/Aids Self-help Groups was awarded
the contract.
1999: Quality standards that people with HIV expect from
HIV prevention activities and sexual health services. A truly innovative manifesto
that does what it says on the tin in six bullet points. This manifesto was
driven by people living with HIV at the ‘Getting It Right’ national
conference of people with HIV at Warwick University.
2001: International HIV and Aids Alliance paper: a much longer
discussion paper that focused more on developing countries and that did not
always grasp the full range of issues facing people with HIV.
2003: Medical Foundation for Aids and Sexual Health (MedFASH)
quality standards for sexual health services. Breaks new ground by remembering
people living with HIV still have sexual health needs after diagnosis, and
that quality standards for treatment and care should apply equally.
2003: British Association for Sexual Health and HIV (BASHH)
Guidelines for STI screening, treatment and care in people diagnosed with
HIV. One factor behind the syphilis epidemic in the UK was the lack of attention
paid to testing and treatment of people living with HIV. But the pendulum
swung too far in the other direction, with clinics wanting to take blood samples
for syphilis testing from virtually anyone passing through without asking
the patient’s permission. Syphilis was suggested for almost any symptom,
whereas before the outbreak it came way down the list. Unfortunately this
led to some over-aggressive treatment when not medically necessary, perhaps
as a form of punishment or aversion-therapy? The BASHH guidelines dealt with
these problems head-on.
International neglect
Very little has happened on the international stage, certainly virtually nothing
to suggest that any other country is more advanced than ours in its work on
sexual health and HIV prevention for people
infected with HIV. Alarmingly, given the demographics of the epidemic worldwide,
very little seems to have been published outlining the needs of heterosexuals
with HIV. We can only hope that on-the-ground work is of far superior quality
than that which gets reported at international conferences.
Making it meaningful
What is good about all the work listed above is that people with HIV were
involved formally and structurally. We were not just consulted at the end,
or asked to endorse it, but involved meaningfully and directly all the way
through. This is in line with the principles of GIPA (the Greater Involvement
of People with HIV & Aids) declared at the Paris Aids Summit back in 1994.The
groundbreaking work wasn’t done in such a way that the only unpaid
contributors were the HIV positive ones, which often happens on steering groups
and working parties. Long gone are the days when we as positive people were
glad to have something to do to fill up the day, and had sufficient income
from the state for us not to worry about earning money.
But our involvement is not sought often enough. Even when it is, it can sometimes
be tokenistic and not always acted upon. For example, it is disappointing
that even important guiding documents like the English Sexual Health and HIV
Strategy and its accompanying toolkit, missed an opportunity to be more explicit
about HIV prevention needing to include people with HIV at every stage. The
CHAPS Making it Count strategy was an excellent piece of work, but in successive
editions it failed to spell out clearly that it referred to gay men living
with HIV as well as those uninfected.
Wither
the voice of positive people?
It would be fair to say that the (now defunct) National Network of HIV/AIDS
Self-help Groups struggled to understand its role within CHAPS, or even to
truly grasp what relevance HIV prevention had to do with HIV positive gay
men. When the structure of CHAPS was revised in 2001, the requirement for
a
formal ‘voice of positive people’s organisations' was removed.The
Network did however produce a very valuable piece of work as part of CHAPS
under the stewardship of Mark Ward. This set out some principles of practice
by which HIV positive people can meaningfully participate in the development
and implementation of
HIV prevention.
Greater sexual health needs
Gay men with HIV proportionally use many health promotion services to a greater
extent than our HIV negative counterparts. This is a good thing. It reflects
the greater likelihood that any sex we have could be sero-discordant (simply
because there are fewer of us) and our disproportionately greater use (by
some) of public sex environments. It is also indicative of the HIV prejudice
that still exists in our communities
making it harder to disclose our status, especially outside major cities.Surely
then, HIV prevention campaigns and written resources produced year-on-year
should more adequately reflect the way (and frequency with which) we use our
sexual health services. This is one of the reasons why UKC recently adopted
a new slogan ‘Our Lives and Voices. Our Health and Services’.HIV
prevention campaigns that fail to properly address the sexual health needs
of people living with HIV do a disservice to the huge amount of work (and
money) that goes into their development and production.
No more tail chasing
Over the last decade it seems there have been too many false starts to the
growth of a proper, shared understanding of what is meant by HIV prevention
with and for HIV positive people.
Ten years is too long for the Aids industry to have been going round in circles
re-discovering the same issues over and over. UKC is committed to involving
more people living with HIV with other organisations to ensure that 2006 is
the year this changes for good.
