Ian Down, (The Kirby Institute) discusses findings from the Seroconversion study that indicate more discussion about the individual and public health benefits of treatments could help HIV-positive gay men make decisions about starting treatment. This presentation was given at the AFAO/NAPWA Gay Men's HIV Health Promotion Conference in May 2012.

1. How recently
diagnosed gay men
talk about HIV
treatments
Ian Down1,2, Jack Bradley1, Jeanne Ellard3,
Graham Brown2,4, Garrett Prestage1,2
1 The Kirby Institute, University of New South Wales
2 Australian Research Centre in Sex, Health and
Society, La Trobe University
3 National Centre in HIV Social Research, University
of New South Wales
4 Curtin University
Rapid Change & Growing Promise
AFAO National Gay Men’s HIV
Health Promotion Conference
29th May 2012

2. How do recently diagnosed gay men talk
about treatments?

3. HIV medicine: Historical context
The ‘when to start’ debate:
•Mid 1990’s – hit early, hit hard
•Late 1990’s – Individualised intervention
•Early 2000’s – Episodic intervention
Ambivalence in community media around developments in HIV treatment:
•Discourses of uncertainty, doubt, detachment and scepticism
•Presented HIV medicine as volatile and unpredictable
(Newman et al, 2006)

4. Recent developments
Evidence of improved clinical outcomes through earlier initiation of therapy
• Reduce likelihood of irreversible immunodeficiency occurring;
• Reduce systemic inflammation
(Jain et al, 2010)
Increasing attention to the use of HIV treatment in prevention
• Particularly following the results of HPTN 052
(Cohen et al, 2011)
What do gay men recently diagnosed with HIV think?

5. The Seroconversion Study
National study of people recently diagnosed with HIV
•Understand behavioural and social factors associated with HIV
seroconversion
•Learn about people’s experiences of living with a recent HIV diagnosis
Between 2007 – 2010
•445 online responses
•76 face-to-face interviews

6. Geographic distribution
Study sample National surveillance
State or territory
(%) 2009 (%)
New South Wales 39.3 35.8
Victoria 30.4 27.6
Queensland 19.4 19.9
South Australia 4.9 5.0
Western Australia 3.6 7.6
Australian Capital Territory 1.6 1.0
Tasmania 0.4 1.4
Northern Territory 0.4 1.5
Not provided 0.4 -

7. Demographic profile
Mean age of 36.4 years
•Age range 18 – 76 years
73% Australian born, 75% Anglo-Australian background
91% gay identified, 4% bisexual, 3% heterosexual
More than half university educated
•23% with post graduate qualifications

8. The doctor basically said that we needed to keep testing and, at that stage,
there was no cause to do anything quickly. Not to panic. And that's what I did.
I was tested regularly and my … viral load started going up ... I started feeling
pretty tired and that, and then the doctor said, "Well, if you're ready to start,
you can but you need to be ready. It's not urgent but …" Yeah. And I said,
"Okay, well let's do it.”
I’d say for six months … I didn't want to take treatment. I thought maybe I
would be the one that might be able to get better! But then I realised that
that wasn't gonna be the case. And, I don’t know. I guess, psychologically, I
just felt ready to start it when I did.
Well I was pretty apprehensive at first, I didn't know how many tablets and
when, and how often they were gonna be required to be taken. And yeah, it
was pretty daunting the thought of starting treatment. But, thankfully, the
first lot of treatment we started has been successful and it's very easy to take.
I only take it once a day. So it's, it's a lot better than I expected and minimal
side effects. Within three months I was down to undetectable, which is good
news. (Age: 54 years)

9. “[My doctor] said, "Frankly, I recommend you go on," and I said, "No, I’m
happy to go on treatments." So I did that straight away.
I think it was maintaining my own health first of all that I wanted to … And
also I wanted to take charge and be not like … avoidant or in denial. I thought
that was not a good approach. … I read all the side effects on the brochures,
and that was very depressing, but I actually didn't have any, so I was very
happy. And, very pleasingly, I went back about five or six weeks - and I was
compliant, so I checked the time, so I keep my times. … it's quite astounding
that my viral load went undetectable in five weeks and my T cells went from
480 to 680. And they were very happy, and I was a bit over the moon. So I was
very happy about that.” (Age: 57 years)

10. What would trigger it is if the doctor said, “You need treatment.” That’s, that’s
what would trigger it, yeah. Because I’m not a doctor. I’m not an HIV
specialist, professional. Leave it up to those guys, you know, 'cause that’s
what they do for a living on a daily basis … I was offered to go on a, a study
where they say, you know, study medications earlier on, which I discussed with
my partner. You know what? I don't really wanna be going on any medications
unless I actually have to go on medications, you know, because we don't know
what the long-term effect of going on medications early is, you know. “Oops,
sorry, you lost your legs. Medication, side effect of medication. You’ll be right.
We’ll get you a nice wheelchair,” yeah. You know, extreme but I’m, you know,
you don't know. And we don't know. And, you know, I don't need to be a
guinea pig. I don't want to be a guinea pig. (Age: 52 years)

11. Summary
Benefits:
• Comfort in taking control
• Reduced infectivity
• Undetectable as identity
Primary concerns:
• Side effects
• Adherence
• Burden of lifetime regimen
• Giving up independence
• Conceding to their illness

12. Conclusions
Are their fears of medicine reasonable?
• whose responsibility is that?
How do they find reliable information and support?
Understandings of undetectable viral load and relative risk

13. Acknowledgements
We would like to thank:
•The participants of this study.
•The community organisations and clinicians who helped with recruitment of
participants.
•The health departments of New South Wales, Victoria, Queensland, South Australia,
Western Australia, Tasmania and the Australian Capital Territory who generously
provided funding for the study.
This study is conducted by a research team at the Kirby Institute (formerly the
National Centre in HIV Epidemiology and Clinical Research), The University of New
South Wales, and the Australian Research Centre in Sex Health and Society, La Trobe
University, consisting of Garrett Prestage, Graham Brown, Jeanne Ellard, Ian Down and
Jack Bradley.