Over the last few years, testing has been one of the most prominent of HIV messages. Many more individuals are testing and testing more regularly than before. Its centrality to HIV, including HIV prevention, is galvanised by the benefits of treatment, so the earlier the better.
To reduce the nearly 50% levels of late and very late diagnosis currently recorded, early recognition and detection are essential. Stubbornly high levels of late diagnosis and their negative effect on health take the shine off the popular classification of HIV as a chronic condition comparable to diabetes, especially from global perspectives.
A key question is where HIV testing fits in an overall strategy and its effect on prevention.
Testing for HIV is integral to tackling HIV at both population and at individual levels.
A reading of the ‘Sexual Health and Blood-Borne Virus Framework 2011 – 2015’ (HIV is subsumed into this) finds about 7 ways in which the Scottish Government aims to improve testing.
- Tailoring the HIV test to individual risk
- Extension of testing to primary care and other non-HIV specialist settings
- Normalising attitudes to testing in public and professionals_
- Testing routinely in cases of indicator illnesses
- Combining HIV testing with testing for syphilis and viral hepatitis
- Staff training on HIV and testing
- Addressing the problem of HIV and related stigma
Primary and non-specialist care settings, routine indicator tests, and staff training have potential for quick and significant benefits if prioritised. People with HIV look forward to seeing Government and Health Board progress reports on this and other documents.
Individuals are often ahead of planners and providers, and are fairly savvy when it comes to working out ways of reducing risk. Quite apart from public health campaigns, three decades of safer sex knowledge within communities have made an impact. The first time I heard anyone mention the link between viral load and infectivity was in 2000 when I heard an HIV-positive gay man say with confidence that he could have sex without a condom because he was undetectable. A full eight years later, the ‘Swiss Statement’ broke this knowledge to the wider community. Likewise, even before ARVs, heterosexual couples in Lothian had worked out that somehow infectivity dipped part way through infection then rose again, providing a window to get pregnant more safely. Scientists and clinicians added the important caveats such as ‘no concurrent STI’ to existing community awareness.
‘Sero-sorting’ trickled equally slowly into the health promotion literature, first by being built into Australian testing strategies. Eventually it was adopted as a component of a form of ‘harm reduction’ by some UK organisations, which have coined the jarring phrase ‘beyond condoms’. In addition to negotiation, openness and honesty in a relationship, knowing one’s status is an essential part of any individual protective strategy.
HIV testing needs to be carefully calibrated to the perceptions, needs, fears and hopes of those targeted. To get the most out of our testing and health promotion strategies, we need to listen more carefully to intelligence ‘on the ground’ which often anticipates that of the professional. The extraction of invaluable information of this nature by researchers needn’t be the only mechanism. It comes also from hearing and sharing the experience of clinic staff and trends picked up early by outreach.
The purpose of HIV testing
The primary purpose of HIV testing is the health of the individual, and cannot be an end in itself. Too many people encounter several stages in the health system before being diagnosed, resulting in very costly late diagnosis. One disadvantage of testing tailored to individual risk lies in equating risk with identity. Some people who would never contemplate taking an HIV test need to be nudged in the right direction. If non-specialists are armed with up-to-date and reliable information and avoid stereotyping, they are well placed to put HIV testing on their clinic agenda. If supported by a broad-based information campaign, we might net those testing late.
Testing’s primary purpose of getting people treated and well, is consistent with its impact on prevention to which it is integral. Indeed laboratory testing costs, for example, have come out of prevention budgets until recently. Along with health promotion, testing is fundamental to prevention. The public health benefits of HIV testing at population levels provide the context for individual benefit. This overlap between individual and public health I s demonstrated by a treatment as prevention approach.
With rates of HIV testing having tripled in the five years to 2010, we dare to hope that HIV testing among gay men in Scotland is now ‘normalised’. The disappointment is that this advance is not reflected in a drop in either prevalence or incidence of HIV. Even the internationally high levels of treatment and viral suppression have not yielded the public health results we might expect.
It is considered that levels of treatment remain insufficient to have a significant impact on transmission of the virus. Other contributory factors include rising rates of unsafe sex (despite sero-sorting and other community strategies), and of course undiagnosed infection. If up to 24% of HIV is undiagnosed, and around 85% of those in contact with specialist HIV services are on treatment, then it follows that only just over 60% of all people with HIV have undetectable virus.
One goal of the Framework therefore must be to improve that 60% figure by 2015. 90% is the goal in New South Wales . Is it too much to ask the same for Scotland?
What must we do?
Where testing strategies often get bogged down is in a lack of equity with uneven national coverage and lack of intensification. In Scotland, the Treatment Needs Assessment (Johnman 2009) pinpointed this patchiness.
Targeted interventions focused on gay men as those most at risk make sense, but it’s not enough, even for the target audience We must think beyond the obvious. There are far too many lost opportunities to prevent HIV in the first place, or to diagnose individuals who present with indicator conditions, but who don’t fit a stereotype.
Once testing strategies are in place, it’s time for action. The connection, however, cannot be assumed and there are too many examples of word-perfect outreach, referral and testing campaigns and protocols with nobody or at best only a handful coming through the door. Unfortunately, poor monitoring and lack of accountability allow this to go unremarked.
The most successful advances in HIV testing have been based on practical approaches such as no-talk and opt-out testing, and partner notification have been driven primarily by clinic staff. The campaign prior to World AIDS Day was all about testing. Once proper evaluation of the impact of this singular message is complete, we will find out if this has resulted in more testing, and, crucially the level of positivity.
Success must be defined as more than testing. What we need now is not more testing per se, but careful extension of testing to new settings such as primary care or emergency units. It is a matter of urgency for these to be promoted and resourced. In higher prevalence areas, a number of GP practices have developed experience and credibility with patients. This primary care expertise needn’t be replicated in every practice. Why not create and resource GP hubs and networks to facilitate sharing the expertise and commitment?
Community testing approaches are working well in Glasgow and Edinburgh, and their high through-put is due to careful planning, good collaboration between NHS and voluntary agencies, and drawing on the skills and competence of clinical staff who support front-line outreach and ensure rapid referral and care.
A plea from various quarters for more psychological support throughout HIV work still goes largely heard. Although there may be no need for full clinical psychology in every HIV unit, equally it is inadequate to expect the less formal support arrangements of voluntary sector provision to act as a substitute. To what extent is its inclusion in the matrix of essential services in the HIV Standards being monitored? Unfortunately, if NHS Boards have reported against the HIV Standards, the reports have not appeared in public.
Attention on HIV testing lately has been on home testing or home sampling, often confused. For home testing legislation to be changed or rescinded, there will have to be convincing reasons, which will be subject to consultation in the near future. Exploration of this and other approaches will form the subject of future blogs.