This is a transcript of the speech I gave at the EATG/AVAC conference on HIV Prevention in Brussels in January this year. There is a certain amount of overlap with my Qx article which I posted yesterday, but there are also some differences as the target audience was different. I thought it worth posting as I truly feel we need PrEP and we need it now.
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| Speaking at the EATG/AVAC conference in Brussels |
Good morning. First of all I should point out I am no
expert, no scientist, no medical professional. I am just a participant in the
PROUD study, and I’m here to talk initially about what being on PrEP has meant
to me personally. I’ll then talk a bit about how people – friends, family, and
the community in general – have reacted to the news that I am on PrEP.
I attend the Working Men’s Project at St Mary’s Hospital in
London, which is a Sexual Health clinic for men who work in the sex industry. I
suppose I should point out at this time that I was once an adult model and
performer, and worked as an escort, and though I no longer do any of those
things, I do, as a tantric masseur, still work on the peripheries of the
industry, so I still go to the same clinic.
I tell you this to explain how I came to be offered the
chance to become a participant in the PROUD study in the first place. I had never even heard of PrEP until November
of 2013, when one of the nurses at the WMP suggested it to me. I’ve always
believed in total honesty about my sexual encounters when visiting a clinic,
and, though I hadn’t realised it or admitted it to myself, it seemed my
behaviour was becoming more risky, enough for me to fit into that at-risk group
that would definitely benefit from taking PrEP. After it was suggested to me, I first went
away and discussed it with my best friend, who is positive, and on Truvada as
one of his anti-retroviral drugs. I’d pretty much decided that I wanted to do
the trial anyway, but it helped to talk it through with him. I then applied,
was accepted and was delighted when I was put onto PrEP straight away, not into
the deferred group that they had at that time. It was all very quick and I’ve
now been on PrEP for over a year. I can honestly say I had no side effects,
apart from some vivid dreams the first week or so.
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| Photo by www.mileselliotpictures.co.uk |
Physically then, the
effect was minimal, or negligible. But how about the psychological effects?
Well at first nothing much changed, but, as it gradually
began to dawn on me, that I was protected from HIV, a cloud started to lift.
You see, I’m a product of the pre AIDS generation. When I
came out there was no HIV, or at least we didn’t know about it. I’m one of the
lucky ones. I didn’t die and I remained HIV negative, obviously or I wouldn’t
be on PrEP. How I got here is no doubt down to a little judgement and a lot of
luck, and I mean a lot of luck. Statistically I should be a statistic.
Back in the 80s the fear of AIDS stopped me having sex
completely for quite a while. Fear of death does that to you and those were
scary times. But once I did start having sex again, for the first time in my
life, I started using condoms. I hated them. Sex didn’t feel so good anymore,
but if you wanted to stay alive, there was no alternative. Sex had become a
dangerous business. I mean people I knew were dying. If you didn’t see someone
for a while, you hardly dared ask what might have happened to them.
I didn’t get tested. In those days a positive diagnosis was
tantamount to a death sentence. We were
even told that the mere knowledge that one was positive could be enough to
precipitate a downturn in one’s health. So I worried. I fretted. I remember I panicked about it so much that at
one point I even started suffering from night sweats. There was nothing wrong
me. And anyway, at that time, what was
the point knowing? But closing my mind
off like that also meant that I remained ignorant of the advances in HIV treatments
as they happened. Then, in 2001, a very close friend of mine died. He was
admitted to hospital with pneumonia. He had never been tested for HIV and by
the time pneumonia took hold he had no immune system left to fight the disease.
He died soon after. If he’d only been tested and on treatment then he’d still
be with us today. I got tested straight after my close friend’s funeral, and
from that day on I became much more aware of my sexual health.
However, even after this, my adherence to safer sex started
to falter. Not straight away of course, but little by little I was slipping. At
first it was just what they call dipping, you know when you just put it in for a few minutes
without a condom, and think, oh well that doesn’t count. I’m not actually
fucking. But actually it does. Then there would be other occasions when I
wouldn’t use a condom at all. There would be discussion, risk assessment if you
like, and I would decide to take the risk. It may have been calculated, but it
was still a risk. And I found every sexual encounter was beginning to become a
minefield. I was finding it harder and harder to use condoms. I’d lose my
erection. I’d become so fixated on the
business of getting the packet open, and the bloody thing on, that I
could barely think of anything else. They say condoms don’t have any side
effects. Well isn’t erectile dysfunction a side effect? I was beginning to give up the idea of
penetrative sex altogether. So PrEP seemed like a miracle, and it has changed
my sex life.
Mainly, and importantly, because it has removed anxiety.
Gone. That’s it! I know I can’t get HIV. I know I can’t pass it on. For the
best part of 30 years now, there was a voice whispering in my ear every time I
had sex. “Be careful. You could get HIV.” And, you know what? That voice has
gone. I can’t tell you how liberating that is. After years of worry about HIV,
suddenly I don’t have to worry anymore. To me it was a no brainer. Short of a
vaccine, this seemed to me to be the most important advance in HIV research
since the discovery of anti-retroviral treatments for HIV positive people.
And because I felt so liberated, because I felt it was such
an amazing breakthrough, I decided I
wanted to get the message out there, be totally honest about what I was doing,
and extol the virtues of PrEP. I thought
that it would be greeted with open arms, and this is when I was surprised.
Now I have always been totally open about what I did and do
for a living, which has given me a small amount of notoriety within the gay
scene, and it is no doubt this notoriety which has enabled me to speak out
about PrEP in the gay media and at certain gay events I’ve been invited to. In
fact I have an article in this week’s Qx, one of the weekly London scene mags
that you can pick up in any gay venue in London.
Going back a bit to July last year, an article written by
one of my co-writers, appeared in TheGayUK condemning the use of PrEP. It was
very negative and inaccurate on many points, and I decided I needed to
retaliate with an article that got the facts right (Sheena was a great help
here) and to shed a more positive light on PrEP. In my naivety, I expected
people would be more open to it once they read the facts, but I actually ended
up being on the receiving end of some pretty nasty comments. I’d worked in the
sex industry for many years, but this was the first time I’d experienced real
slut-shaming. I was called an irresponsible slut who didn’t give a damn about
the sexual health of anyone else, which, considering the reason I was doing
PrEP was precisely because I was concerned about my sexual health and that of those I was having sex with,
was a little hurtful.
After I’d calmed down a bit from suffering those reactions,
I started to look at the possible reasons for this negativity, for without
understanding those reasons, we will never be able to address them, or break down
prejudices.
I questioned why the reactions of my family and straight
friends were so positive, when those of some of my gay friends were not. Could
it be that straight and gay people saw condom free sex in different ways? For straight people, condom free sex was not
just about pleasure, it was also about conceiving. It was about life. Whereas,
for us, it had become associated with death.
Now a couple of weeks ago,
I saw a video of a speech by the magnificent Irish drag queen, Panty
Bliss, which discusses the inherent homophobia that exists within our society,
that homophobia which makes us ever alert, unable to make the slightest
unconscious gesture of affection towards our partner without first checking our
surroundings to see if it’s safe. He touches on the fact that we have become so
used to this situation, that we have come to accept it as ok. He points out
that this homophobia comes down to a basic distaste for what we do in bed,
specifically anal sex, and that these homophobes, when they look at us don’t
see a person, they just see a sex act.
And I think our problem lies in an internalised homophobia,
which makes us ashamed of who we are, and, more importantly, ashamed of what we
do in bed, particularly if we enjoy anal sex.
Let’s face it sex, any kind of sex, has long been about
shame, unless it was to bring about a new life, which of course made gay sex
more shameful still. There were those few hedonistic days when it finally
became legal and the only risk gay sex carried was the possibility of picking
up an easily treatable STD. Then AIDS came along. We had to deal with the shame
of realising that our pleasure was killing us, that anal sex was one of the main
transmission routes for this terrible virus. Worse still, the Reagan administration
didn’t lift a finger to help us because it and a great swathe of America didn’t
actually care that we were dying. That’s pretty hard to deal with.
Eventually, due to the efforts of campaigners like Peter
Staley, we came up with drugs to keep us alive and we discovered that we could save ourselves and
our partners by wearing a condom, and the term safer sex was coined . And that’s
when condom free sex became really shameful.
Now, for all the advances that have been made in recent
years, for all the new therapies, the fact that we now know positive people
with an undetectable viral load can’t pass on the virus, that shame about
condom free anal sex still persists.
We feel shame about that time we were drunk or high and
threw caution to the wind. We woke up the next morning and felt shame.
We felt shame about that time we realised we didn’t have any
condoms but went ahead with it anyway.
We felt shame about that time the condom split but we kept
going because it felt so much better, and, here’s the thing, we felt really
ashamed about admitting, even to ourselves, that one fact. Sex without condoms
feels better. There I’ve said it. And apparently I’m not alone, as the majority
of people on the PROUD study gave the reason that “it felt better” as the main
one for having condom free sex. Not being high or drunk.
Such is the shame about condom free sex, that we even coined
a new word for it, a loaded word that carried with it a sense of risk.
Barebacking. And more and more people were willing to take the risk. We might
not actually want to get HIV, but at least we now weren’t going to die if we
did.
Now I wish we could get rid of that word “barebacking”,
banish it from our vocabulary, because barebacking when you’re protected isn’t
risky, or shameful, it’s just natural.
That said, I understand why it’s going to take some time for
that message to get through, and it’s only by people like me being up front and
talking about it that the message will get through.
I think I’ve probably now heard every argument imaginable against
PrEP, and most, to be honest, are just
side issues, but the one I hear most often is that it will encourage
promiscuity, which was exactly the main objection to the birth control pill for
women back in the 60s. Well we were able to get over that problem, and the
birth control pill is now, in the west at least, the most commonly used form of
contraception for the majority of women, mostly because they were able to take
control of their own sex life.
And this is the point about PrEP. It puts me in control. I
don’t have to worry about whether a partner is telling me the truth about their
status. I take my pill every day and I know I’m protected. Just as women knew
when they took their pill every day that they couldn’t become pregnant.
This is the good news we need to give MSM. That PrEP allows
us to take control of our own sexual health. PrEP can eliminate the difference
between positive and negative and we can become a community that is no longer
split by our HIV status.
Quite the opposite of being irresponsible, PrEP is taking
responsibility for our own health, and those with whom we have sex. That’s why
we need PrEP – and we need it now!
