HIV Australia | Vol. 9 No. 3 | November 2011

In this opinion piece, ANDREW BURRY and DAVID MILLS argue that Australia’s gay community should play a central role in determining the services and support appropriate for their needs. If some gay men prefer to self-administer their HIV tests in privacy, they ask, who are we to question their right to do so?

Australia demonstrates an occasional reluctance to embrace innovations successfully employed in other countries including from those with similar HIV epidemics. Testing is an example, even though this has been given special prominence in our HIV response. Discussion around rapid testing and increased use of community settings with peer support has been robust, but potential for self-administered testing is a discussion without an audience. The Australian response has been world leading, but are we blocking further success by over protecting what we have already achieved?

It is widely accepted that individuals make decisions that we may not agree with, but we support informed choices and build capacity to reduce risk and harm. We understand the reality that men who have sex with men will not always use condoms with casual partners, and we accept a critical role in reducing risk, even though we don’t fully know how best to do so. We have a long-standing model for HIV testing, but this model may be precluding vulnerable groups of men from actually testing, and it must now be time to question some of the underlying assumptions to what may no longer be fully effective.

Over time, competing and complementary policy questions have built up around HIV testing in Australia: consent, client benefit, maintaining epidemiological quality, clinical standards, contact tracing and prevention of transmission.¹ The consequence of these policy tensions and other concerns have seen testing controlled predominantly within clinical settings with limited influence from the community side of the HIV partnership. The testing model is largely one-size fits all, and arguably perhaps, metropolis-centric.

One-size rarely fits all and new approaches are needed to increase the number of men who have (anal) sex with men who have ever tested for HIV and their frequency of testing. Despite promotion by AIDS Councils and clinicians, 40% of men recruited through gay community periodic surveys had not received an HIV test in the last 12 months.² Mathematical modelling suggests that 9–13% of men who have sex with men living with HIV are undiagnosed, contributing to 31% of new HIV infections.³

For a long time we have had significant insights into barriers to testing for men who have sex with men⁴ and we understand how this contributes to the rate of transmission. We have not been ignoring this evidence: sexual health clinics have been adjusting their practice to reduce some of these barriers but other changes are needed to make further improvement.

We suggest there are three main groups of reasons that fuel a resistance to self-administered testing and particularly home based approaches.

Firstly, there is a notion of clinical control, or ‘doctor knows best’. The history of medicine in Australia is one where a doctor figure is relatively unquestioned in diagnosis, prognosis and prescription. And yet, paradoxically,the history of our HIV epidemic is one where the early and crucial success came substantially in the absence of the medical establishment. Gay men worked out that they needed to take control of an issue that threatened their entire community and collective action from within turned the tide. Since then gay men have had a diminishing control over their own health.

Secondly, we have institutionalised homophobia. A suggestion that homophobia in the HIV sector is influencing gay men’s health is unlikely to be a welcome one. Nonetheless, we believe that the current denial of internationally proven testing approaches meets the criteria. This plays out through a belief that gay men are fundamentally irresponsible and cannot be trusted to always act in a socially responsible way.

Resources made available to gay men are routinely censored to avoid any risk that a proportion, no matter how small, will use them inappropriately. For example, within the sector we are reluctant to discuss with gay men that in the absence of condoms, better to be a top than a bottom, better to have unprotected sex with an HIV negative partner than a positive one, better not to let someone come inside your arse and so on. Ironically, gay men havelong known these things we hesitateto discuss.
Thus, testing and providing results must only occur in highly controlled settings,so that a person can be managed irrespective of their own capacity for self-management.

The third set of reasons is epidemiological. Australia hasprobably the best epidemiological data around HIV diagnoses in the world and our surveillance system is highly evolved. One of the reasons for this success is that testing of men who have sex with men is highly managed and controlled and we collect a considerable amount of information. In terms of managing the response and assisting prevention efforts, this data is important in allowing modelling and insights into some dynamics of transmission. Should testing bypass this established system, less data might be available and therefore surveillance quality would decline.

For self-administered testing to be considered as a future strategy, we suggest that all three sets of barriers have to be addressed to the satisfaction of stakeholders; although here we would argue that the health and wellbeing of men who have sex with men should be preeminent within the context of overall public health policy.

The epidemiological considerations are straightforward. We need only be confident that a self-administered positive result would in all probability result in a confirmatory test via the established system, and equivalent data would still be obtained as it is now. Contact tracing requirements would be achieved. Some who get a positive result may take no follow up action,but would this number be significantly greater than the numbers who don’t return for a positive result now?

Balancing this is that properly targeted and managed, self-administered testing could raise the total testing rate/frequency and would offer a significant benefit for those living away from convenient, anonymous testing locations and who are now not screened at all.

It won’t be easy to encourage clinicians and social scientists to relax their level of control over the Australian HIV response, largely because there is an appropriate pride in the contribution they have made. But like all of us that seek to minimise the personal and social impacts, and the transmission of HIV, we can’t overlook the fact that we are servants of those we seek to serve.

Just as we have to some extent placed people living with HIV at the centre of our response, we must similarly find a more central role for a gay community in determining the services and support appropriate for their needs. With or without rapid testing, the process itself can be a burden on gay men simply for being gay. In other words, if you are a man that has sex with men, we want you to test at least once per year. If some gay men prefer to self-administer their test and to do so in privacy, who are we to question their right to do so?

This leads us to the more difficult issue of homophobia and judgements made on how gay men might behave if they were able to assume more control over their own health. One set of arguments are around an idea that gay men will choose to use a negative result as permission to avoid safer sex measures. This is surely an unsustainable argument in the face of no supporting evidence. Why would a self-administered test be likely to influence behaviour any more than a traditional test? In any event, we might suggest that more frequent testing for someone who is highly sexually active will reduce their risk of knowingly passing on the virus and this can’t be said for someone who has no information of their status.

Another set of arguments are based around the physical and mental wellbeing of a person who tests privately and gets a positive result; false or true. Again there is no evidence that there would be an increase in self-harm following a positive result from a self-administered test. On the contrary,the New England Journal of Medicine in 2006 said that expanded screening resulted in no reported increase in the rate of suicide, and this after 175,000 people purchased kits.⁵

These assumptions about what gay men might do are homophobic and embedded in the institutions we count on to support health and wellbeing.We should no longer justify denying the rights of gay men to the best technology based only on speculation about what a few might do. Discussion now must be firmly focussed on enabling the introduction of self-administered testing, rather than either denying its existence or vilifying its use.

If our consideration of self-administered testing took the positive perspective of seeking to answer how it could be introduced and how it could further support our HIV response,our conversation would be different. We would identify for whom a self-administered HIV test at home would be most suited. For example, a person who had some level of risk, had ever previously had an HIV test and who might not now test. Or, a person for whom, for any reason, alternative testing modality was difficult. We might also consider a variety of models under which self-administered testing could be introduced. For example, physician prescribed, or with a regulated supply of kits that met appropriate quality standards or withan education commitment that makes the use of a kit an informed and supported choice.

Denying the many for what a few might do is choosing a lowest common denominator approach that should be unacceptable. That we are accepting it means weakening our claim to a future best practice HIV response.

References

1 Department of Health and Ageing (DoHA). (2006). National HIV Testing Policy 2006. Commonwealth of Australia, DoHA, Canberra. Available at: http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-bbvs-hiv-testing-policy (accessed 27 September 2011).

2 Holt, M. et al. (2011). Gay Community Periodic Surveys: National Report 2010. National Centre in HIV Social Research, university of New South Wales, Sydney. Available at: http://nchsr.arts.unsw.edu.au/media/File/GCPS_2010_National_report.pdf (accessed 27 September 2011).

3 Wilson, D. et al. (2008) Mathematical models to investigate recent trends in HIV notifications among men who have sex with men in Australia. National Centre in HIV Epidemiology and Clinical Research, university of New South Wales, Sydney. Available at: http://www.med.unsw.edu.au/NCHECRweb.nsf/resources/HIV-Mod_FINAL-Rep/$file/Final+NCHECR+Modelling+Report.pdf (accessed 27 September 2011).

4 Koelmeyer, R., Grierson, J., and Pitts, M. (2011) Motivations for and barriers to HIV testing in Australia: Information to support the revision of the National HIV Testing Policy 2006. the Australian Research Centre in Sex, Health and Society, Melbourne. Available at: http://www.ashm.org.au/images/arv_guidelines/arcshs_motivations_for_and_barriers_to_hiv_testing_report.pdf (accessed 27 September 2011).

5 Alexi, A., Wright, M., Ingrid t., Katz, M. (2006, February). Home testing for HIV, The New England Journal of Medicine. Available at: http://www.nejm.org/doi/full/10.1056/NEJMp058302 (accessed 27 September 2011).

Andrew Burry is General Manager at the AIDS Action Council of the ACT. David Mills was Community Development Manager at the AIDS Action Council, and has since taken up a position with the AIDS Committee of Ottawa, Canada.

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