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How recently diagnosed gay men talk about HIV treatments


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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.

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How recently diagnosed gay men talk about HIV treatments

  1. 1. How recentlydiagnosed gay men talk about HIV treatments Ian Down1,2, Jack Bradley1, Jeanne Ellard3, Graham Brown2,4, Garrett Prestage1,21 The Kirby Institute, University of New South Wales 2 Australian Research Centre in Sex, Health and Society, La Trobe University3 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. 2. How do recently diagnosed gay men talkabout treatments?
  3. 3. HIV medicine: Historical contextThe ‘when to start’ debate:•Mid 1990’s – hit early, hit hard•Late 1990’s – Individualised intervention•Early 2000’s – Episodic interventionAmbivalence 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. 4. Recent developmentsEvidence 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. 5. The Seroconversion StudyNational study of people recently diagnosed with HIV•Understand behavioural and social factors associated with HIVseroconversion•Learn about people’s experiences of living with a recent HIV diagnosisBetween 2007 – 2010•445 online responses•76 face-to-face interviews
  6. 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. 7. Demographic profileMean age of 36.4 years•Age range 18 – 76 years73% Australian born, 75% Anglo-Australian background91% gay identified, 4% bisexual, 3% heterosexualMore than half university educated•23% with post graduate qualifications
  8. 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 thats what I did.I was tested regularly and my … viral load started going up ... I started feelingpretty tired and that, and then the doctor said, "Well, if youre ready to start,you can but you need to be ready. Its not urgent but …" Yeah. And I said,"Okay, well lets do it.”I’d say for six months … I didnt want to take treatment. I thought maybe Iwould be the one that might be able to get better! But then I realised thatthat wasnt gonna be the case. And, I don’t know. I guess, psychologically, Ijust felt ready to start it when I did.Well I was pretty apprehensive at first, I didnt know how many tablets andwhen, and how often they were gonna be required to be taken. And yeah, itwas pretty daunting the thought of starting treatment. But, thankfully, thefirst lot of treatment we started has been successful and its very easy to take.I only take it once a day. So its, its a lot better than I expected and minimalside effects. Within three months I was down to undetectable, which is goodnews. (Age: 54 years)
  9. 9. “[My doctor] said, "Frankly, I recommend you go on," and I said, "No, I’mhappy 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 … Andalso I wanted to take charge and be not like … avoidant or in denial. I thoughtthat was not a good approach. … I read all the side effects on the brochures,and that was very depressing, but I actually didnt have any, so I was veryhappy. And, very pleasingly, I went back about five or six weeks - and I wascompliant, so I checked the time, so I keep my times. … its quite astoundingthat my viral load went undetectable in five weeks and my T cells went from480 to 680. And they were very happy, and I was a bit over the moon. So I wasvery happy about that.” (Age: 57 years)
  10. 10. What would trigger it is if the doctor said, “You need treatment.” That’s, that’swhat would trigger it, yeah. Because I’m not a doctor. I’m not an HIVspecialist, professional. Leave it up to those guys, you know, cause that’swhat they do for a living on a daily basis … I was offered to go on a, a studywhere they say, you know, study medications earlier on, which I discussed withmy partner. You know what? I dont really wanna be going on any medicationsunless I actually have to go on medications, you know, because we dont knowwhat 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 dont know. And we dont know. And, you know, I dont need to be aguinea pig. I dont want to be a guinea pig. (Age: 52 years)
  11. 11. SummaryBenefits:• Comfort in taking control• Reduced infectivity• Undetectable as identityPrimary concerns:• Side effects• Adherence• Burden of lifetime regimen• Giving up independence• Conceding to their illness
  12. 12. ConclusionsAre 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. 13. AcknowledgementsWe would like to thank:•The participants of this study.•The community organisations and clinicians who helped with recruitment ofparticipants.•The health departments of New South Wales, Victoria, Queensland, South Australia,Western Australia, Tasmania and the Australian Capital Territory who generouslyprovided funding for the study.This study is conducted by a research team at the Kirby Institute (formerly theNational Centre in HIV Epidemiology and Clinical Research), The University of NewSouth Wales, and the Australian Research Centre in Sex Health and Society, La TrobeUniversity, consisting of Garrett Prestage, Graham Brown, Jeanne Ellard, Ian Down andJack Bradley.