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![Barriers to PEP: Making it an ordeal!
“Obtaining PEP was horrendous and one of the worst
experiences of my life. [It’s] easier just to accept getting HIV,
hence my decision not to go a third time”!](https://image.slidesharecdn.com/seroconversionstudypresentation20140523-140527003700-phpapp02/85/Seroconversion-Study-Presentation-May-2014-34-320.jpg)
![Providing a referral!
“He just seemed pretty ignorant to a lot of things. He said it
wasn't good and … it's gonna be hard to get used to it, and blah,
blah, blah. He was ignorant on medications and treatment …
Which wasn't good for me 'cause I was ignorant to everything. I
didn't know. Hey, I just thought I was gonna die type stuff. I
thought, "Shit, what'll I do for the next two years? I'm gonna be
dead soon. So I was really lucky because I, I got to speak to
[AIDS Council staff member] within maybe two days, two or three
days after. [How was that?] Really good. He's awesome.”!](https://image.slidesharecdn.com/seroconversionstudypresentation20140523-140527003700-phpapp02/85/Seroconversion-Study-Presentation-May-2014-44-320.jpg)
Seroconversion Study Presentation May 2014
- 1. The HIV SeroconversionStudy What we've learnt so far, and what we're planning next Presented by Ian Down Kirby Institute, UNSW Australian Research Centre in Sex, Health and Society, La Trobe University Grace Vaughan House Friday, 23rd May 2014
- 2.
- 3. Study history! • Therehave been studies of this kind on-and-off in Australia since 1992! • The first studies were clinic-based with a nurse administering the questionnaire & were largely restricted to Sydney! • The current version began in late-2007 & was the first to be conducted online, meaning it could be conducted nationally!
- 4. Study aims! • Interviewindividuals recently diagnosed with HIV about the factors they believe led to their infection, and their experiences since diagnosis;! • Inform HIV organisations and state and territory health departments about the contexts of risk behaviours and motivations for these; ! • Consider current gaps in policy and program development and implementation, including in the research base. !
- 5. Eligibility criteria! • Beingover 16 years old! • Living in Australia! • Having been diagnosed with HIV within the previous two years! ! ! Until December 2013, only those aged 18 years and over were eligible to participate! ! Until 2010 there was an additional eligibility criteria of being male!
- 6. Enrolment! Enrolment began inDecember 2007! • current funding allows recruitment to continue until end of June 2015! Recruitment occurs mainly through community sources! Participants enrol into the study through the study website! • Online survey, takes about 20-30 minutes to complete! • Option to volunteer for a face-to-face interview!
- 7.
- 8. Participation! Gay & bisexualmen: 2007-2013! • 506 survey responses! • 95 face-to-face interviews! ! Women & heterosexual men: 2010-2013! • 27 survey responses! • 3 face-to-face interviews!
- 9. Geographic distribution! N=506 RecruitedResidence Diagnosis High-risk event NSW 189 (37%) 186 (37%) 165 (33%) 139 (28%) Victoria 132 (26%) 133 (26%) 124 (25%) 98 (19%) Queensland 97 (19%) 99 (20%) 95 (19%) 74 (15%) Western Australia 33 (7%) 32 (6%) 24 (5%) 20 (4%) South Australia 26 (5%) 25 (5%) 21 (4%) 15 (3%) ACT 12 (2%) 15 (3%) 9 (2%) 5 (1%) Tasmania 6 (1%) 5 (1%) 6 (1%) 4 (1%) Northern Territory 2 (0.4%) 3 (1%) 3 (1%) 0 Overseas - 5 (1%) 24 (5%) 79 (16%) Not provided 9 (2%) 3 (1%) 33 (7%) 72 (14%)
- 10. Demographic characteristics! • Meanage at diagnosis: 34.3 years (range 16-73 years)! • 91% gay identified, 6% bisexual, 2% heterosexual! • 71% Australian born, 76% Anglo-Celtic background! • 53% university educated, 21% to post-graduate level!
- 11.
- 12. Relationship to sourceperson! 58% 62% 68% 61%42% 38% 32% 11% 23% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Kippax et al., 2003 Volk et al., 2006 Jin et al., 2009 Current data Fuckbuddy Boyfriend Casual partner
- 13. Knowledge of sourceperson’s status! 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Casual partner Fuckbuddy Boyfriend I thought he was HIV-negative I didn't know his status I thought he was HIV-positive
- 14. Summary of HREpractices! N=430! n! %! Any anal intercourse! 384! 89.3! Any unprotected anal intercourse! 322! 74.9! Receptive anal intercourse ! 317! 73.7! Receptive unprotected anal intercourse:! 280! 65.1! withdrawal! 103! 24.0! ejaculation! 177! 41.2! Insertive anal intercourse ! 174! 40.5! Insertive unprotected anal intercourse! 136! 31.6! Reciprocal anal intercourse! 107! 24.9! Reciprocal unprotected anal intercourse! 86! 20.0!
- 15. Summary of HREpractices! N=430! n! %! Any anal intercourse! 384! 89.3! Any unprotected anal intercourse! 322! 74.9! Receptive anal intercourse ! 317! 73.7! Receptive unprotected anal intercourse:! 280! 65.1! withdrawal! 103! 24.0! ejaculation! 177! 41.2! Insertive anal intercourse ! 174! 40.5! Insertive unprotected anal intercourse! 136! 31.6! Reciprocal anal intercourse! 107! 24.9! Reciprocal unprotected anal intercourse! 86! 20.0!
- 16. Summary of HREpractices! N=430! n! %! Any anal intercourse! 384! 89.3! Any unprotected anal intercourse! 322! 74.9! Receptive anal intercourse ! 317! 73.7! Receptive unprotected anal intercourse:! 280! 65.1! withdrawal! 103! 24.0! ejaculation! 177! 41.2! Insertive anal intercourse ! 174! 40.5! Insertive unprotected anal intercourse! 136! 31.6! Reciprocal anal intercourse! 107! 24.9! Reciprocal unprotected anal intercourse! 86! 20.0!
- 17. What about riskreduction?!
- 18. Comparing differences inUAIC! Seroconversion Study! • 200 newly positive men! • Describe a UAIC event as their HRE! PASH! • 343 HIV-negative men! • Describe a recent occasion of UAIC! ?"
- 19. SCS n (%) PASH n (%) PValue Age in years (mean, SD) 34.1 (9.1) 36.8 (12.2) P=0.012 Sexual identity Gay/homosexual 188 (94.0) 290 (84.5) P=0.006 Bisexual 10 (5.0) 32 (9.3) Other 2 (1.0) 21 (6.1) Education No university 93 (46.5) 153 (44.6) P=0.219 Uni - undergraduate 68 (34.0) 103 (30.0) Uni - postgraduate 39 (19.5) 86 (25.1) Demographic characteristics!
- 20. SCS n (%) PASH n (%) PValue Anglo-Australian background 164 (82.0) 231 (67.3) P<0.001 Regular relationship at time 70 (35.0) 153 (44.6) P<0.001 Prior HIV test Within 12 months prior 125 (62.5) 279 (81.3) P<0.001 More than one year prior 60 (30.0) 58 (16.9) Not previously tested 15 (7.5) 0 Demographic characteristics!
- 21. SCS n (%) PASH n (%) PValue Participant’s home 38 (19.0) 120 (35.0) P<0.001 Partner’s home 57 (28.5) 116 (33.8) Sex club/Sauna 56 (28.0) 45 (13.1) Beat/other public place 18 (9.0) 21 (6.1) Other 30 (15.0) 41 (11.9) Location of UAIC event
- 22. SCS n (%) PASH n (%) PValue Met for first time at this event 140 (70.0) 136 (39.7) P<0.001 Had sex with previously 41 (20.5) 156 (45.5) P<0.001 Knowledge of HIV status Believed HIV-positive 29 (14.5) 13 (3.8) P<0.001 Believed HIV-negative 53 (26.5) 232 (67.6) Didn’t know 110 (55.0) 95 (27.7) Familiarity with UAIC partner
- 23. SCS n (%) PASH n (%) PValue UAIC in the context of group sex 74 (37.0) 40 (11.7) P<0.001 UAIC highest risk practice Receptive UAIC 170 (85.0) 216 (63.0) P<0.001 without ejaculation 64 (32.0) 106 (30.9) P=0.599 with ejaculation 106 (53.0) 110 (32.1) P<0.001 Insertive UAIC 72 (36.0) 203 (59.2) P=0.021 Reciprocal UAIC 42 (21.0) 85 (24.8) P=0.041 Sexual practices at UAIC event
- 24.
- 25. PEP Knowledge: GCPS! 62%" 58%"58%" 56%" 43%" 65%" 0% 10% 20% 30% 40% 50% 60% 70% 80% Queensland (2013) Melbourne (2013) Sydney (2012) Adelaide (2012) Perth (2012) Canberra (2011) Column1( Proportion of HIV-negative men who had heard of PEP, Gay Community Periodic Survey "
- 26. PEP Knowledge: SCS! • 48% of men had heard of PEP at time of the high-risk event! Sales( Not heard of PEP Heard of PEP
- 27. Prior use ofPEP! • 28% of those who had heard of PEP had accessed PEP previously! 13%" Sales( Not heard of PEP Heard of PEP Prior use of PEP
- 28. Reasons for notusing PEP! • Most common response for not having accessed PEP following HRE was not having been aware of it! • Among those who were aware of PEP, almost half said they didn’t attend for PEP after the HRE because they not believe the risk was sufficient to warrant it!
- 29. Barriers to PEP:Accessibility! “I didn’t really think about it because I was not aware it was generally available (i.e., I thought the process of getting PEP would be too difficult)”! “Until now I didn't know PEP was available for everyone in sex clinics; I didn't now it was easy to get it”! “I didn't know where to get it”! “Not convenient enough as it was just before a weekend”!
- 30. Barriers to PEP:Ongoing nature of risk! “As I had regular bareback sex with people, it wasn’t worth going to the doctor’s weekly to get this treatment.”!
- 31. Barriers to PEP:Timing! “By the time the P-n-P session had finished the first incidence of cum in my bum was greater than 72 hours past.”! ! “Because I was interstate, and was still 'coming-down' after the session. By the time my head was clear again, it was too late for PEP”!
- 32. Barriers to PEP:Perception of being judged! “The last time I had asked about taking PEP at the local hospital I was met with attitude and condescension. This made me feel like asking for PEP was a crime and that I was taking up valuable resources by asking.”! ! “I had taken it before - somewhat embarrassed to ask for it again - hoped it would not be a problem - felt that I had already had my 'chance' with PEP and that if I got infected now I deserved it.”!
- 33. Barriers to PEP:Having to justify! “On my previous two occasions I was grilled to a point I felt like I was begging; I would rather have just bought them over counter even if $400”! !
- 34. Barriers to PEP:Making it an ordeal! “Obtaining PEP was horrendous and one of the worst experiences of my life. [It’s] easier just to accept getting HIV, hence my decision not to go a third time”!
- 35.
- 36. Undiagnosed infection! • Itis estimated that around one in five new infections are transmitted by men in primary infection – About 3% of all men with HIV are in primary infection • And that almost a third are transmitted by men with undiagnosed HIV – About 10% of positive men were undiagnosed in this model Wilson et al., 2009
- 37. HIV testing inGCPS! 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Ever tested Non-HIV-positive men tested in previous 12 months
- 38. SCS: Prior HIVtesting! • 77% of men clearly reported ever having previously tested! – 53% had tested within the twelve months prior to their diagnosis!
- 39. Univariate analysis Multivariateanalysis OR P Value aOR P Value Identifying as gay 2.58 (1.38-4.80) 0.003 University education 1.07 (0.75-1.52) 0.706 Age (mean, SD) 0.99 (0.97-1.01) 0.200 Engagement with gay men 1.29 (1.01-1.51) 0.001 1.28 (1.09-1.50) 0.002 Health optimism 1.16 (1.05-1.28) 0.003 Transmission optimism 1.17 (1.01-1.36) 0.031 Viral load optimism 1.37 (1.00-1.87) 0.046 Likelihood to have recently tested
- 40. Reasons for delayingtesting! n (%) I had no illness which made me worry 23% I was afraid to get tested 23% I did not do anything risky 17% I didn't want to know 14% My doctor did not suggest it 13% " Just over half of men weren't aware of experiencing a seroconversion illness
- 41. Reasons for testing! N=506n (%) I had an illness which made me worry 32% It was part of my regular testing pattern 27% I did something risky 18% My doctor suggested it 10% I wanted to know my HIV status 8%
- 42. Overcoming fear oftesting! “I was always too scared to go for a test. And the … first couple of experiences with going for a test was through my family GP that I’d been seeing since I was a teenager, and they didn’t know much about HIV. And they were kind of, I can remember some of the things they’d say to me, like, ‘You're playing Russian roulette.’ I didn’t feel comfortable. And it wasn’t until … I actually did a test through M Clinic, when I actually felt more comfortable knowing the support would be there.”!
- 43.
- 44. Providing a referral! “Hejust seemed pretty ignorant to a lot of things. He said it wasn't good and … it's gonna be hard to get used to it, and blah, blah, blah. He was ignorant on medications and treatment … Which wasn't good for me 'cause I was ignorant to everything. I didn't know. Hey, I just thought I was gonna die type stuff. I thought, "Shit, what'll I do for the next two years? I'm gonna be dead soon. So I was really lucky because I, I got to speak to [AIDS Council staff member] within maybe two days, two or three days after. [How was that?] Really good. He's awesome.”!
- 45. Sex since diagnosis! N=259n (%) Reduce the number of partners I have sex with 111 (43%) Stop having sex altogether 100 (39%) Avoid sex with HIV negative partners 80 (31%) Tell people my HIV status before sex more often 68 (26%) Reduce my drug use 40 (15%) Avoid sex with HIV-positive partners 23 (9%) Avoid telling people my HIV status before sex more 22 (8%) I have become more of a bottom 20 (8%) Increased my drug use 15 (6%) I have become more of a top 14 (5%)
- 46. Disclosing! • Men weremost likely to disclose to regular partners and gay friends, though:! – 17% had not disclosed to their regular partner;! – 27% had not disclosed to any of their gay friends; and! – 54% had not told any of their immediate family!
- 47.
- 48. The Treatment Cascadein Australia! 0% 20% 40% 60% 80% 100% People living with HIV Diagnosed HIV-positive On treatment Have suppressed viral load Undiagnosed infection About 25% Estimated 33,000 Diagnosed, not yet on treatments About 34% Estimated pool of untreated HIV infection About 62% 24,7500 (70-80%) 11,523 (54-70% of those diagnosed) 10,560 (90-95% of those on treatments)
- 49. Treatment as prevention! • Growing evidence of benefits of early initiation of treatments! – Improve the health of people with HIV! – Prevent the onward transmission of the virus! ! • Scaling up of treatment may face challenges!
- 50. Historical context ofHIV medicine! When to start:! • Hit early, hit hard! • More cautious approach! • Treatment breaks! Discourses around HIV medicine of scepticism and doubt!
- 51. Ben, 45: Tobe honest, I did not believe that you could give somebody a pill and that they would survive this virus that is, as far as I’m concerned, very much a death sentence. I don’t trust it. I’ll be honest – I don’t trust it. I mean scientists don’t know enough about the medication. I research the medication every single day so there’s not a day goes by that I don’t check and see what information is available on, like all the different types of medication … and I mean there is no, no research on the longevity of the taking of the medication as yet. So, therefore, I have doubt!
- 52. Derek, 44: Atthe moment, I have no idea how infectious I am. But if I’m on medication, I have a feeling that I can keep it in control rather than it keep jumping around, up and down. And I know they’re gonna have side-effects, but I’m ready to deal with that rather than. . . like if something goes wrong, I don’t wanna be the one responsible because I wasn’t taking care of myself. I know I have to be very careful from now on. I just don’t want it to be more serious than what it should be.!
- 53. Corey, 24: Medication,I thought was always a given. It was always going to happen and I was quite prepared to, you know, to take medication. However, it was sort of like being diagnosed all over again when she said, “I’ve got your bloods back. We really, really need to start talking about medication and treating it.”!
- 54.
- 55. Summary: high-risk event! • Seroconverters are fairly typical gay men! • Little evidence of use of use of risk reduction strategies!
- 56. Summary: PEP! • Halfof men who seroconvert were not aware of PEP! • History of PEP use is high among men who seroconvert! • The experience some men have requiring PEP appears to put some off accessing PEP following subsequent exposures!
- 57. Summary: HIV testing! • Men who seroconvert appear to test at levels slightly lower than seen in behavioural surveillance ! • Men want testing options that are convenient, appropriate and sensitive! • Structural barriers are being addressed … what about fears?!
- 58. Summary: since diagnosis! • Receiving an HIV diagnosis is still difficult for many, and results in significant changes! • Changes in sexual behaviour in the short term, are the sustained?! • Low levels of disclosure, make it a very isolating experience!
- 59. Summary: treatments! • Littleknowledge or trust of advances in treatments! • Discomfort in accepting illness, adherence, commitment! • Difficulty in accessing reliable advice!
- 60.
- 61. NHMRC Partnership Grant! • Current funding ends in June 2015! • In the process of applying for NHMRC Partnership Grant! • Partners will be: state & territory health departments, and HIV community organisations! • NHMRC match contributions provided by the partners! • Funding will be for 2015-2018!
- 62. Evaluating the impactof programs for newly diagnosed! • Continue to recruit participants, but before they participate in newly diagnosed programs! • Interview both before and after program, and again twelve months later! • Have a comparison group of people who choose not to participate in the program! • Measure uptake of ART, HIV risk reduction, disclosure, social engagement and other well-being indicators!
- 63. Latest study report! Availableat! www.hivss.net!
- 64. Thanks & acknowledgements! Allthe study participants who gave of their time The many community organisation staff and clinicians who have assisted with promotion and recruitment for the study The study team: Garrett Prestage, Ian Down, Jeanne Ellard, Graham Brown, Kathy Triffitt, Asha Persson (CSRH) and Chris Gianacas The Seroconversion Study was funded by the Health Departments of: New South Wales, Victoria, Queensland, Western Australia, South Australia, Tasmania, Northern Territory & the Australian Capital Territory!