Don’t live in ignorance: how do we expand HIV testing?

Should everyone take an HIV test? Gus Cairns investigates.

Dr Valerie Delpech is a consultant epidemiologist at the UK’s Health Protection Agency (HPA). She says: “The whole culture around HIV testing and disclosure is very different in the UK to Australia, where I grew up. There I was used to gay men coming in for an annual HIV test.”

As a result, she explains, they are detecting HIV earlier down under. Only just over half of the gay men who test positive in the state of New South Wales have had HIV for more than a year.¹ In contrast, early results from incidence testing in the UK² indicate that between 60 and 80% of gay men diagnosed here acquired HIV more than a year ago.

Could do better…

As we said in Test early, test often…, HIV testing rates in people who go for sexual health check-ups in genitourinary medicine (GUM) clinics have risen.

But not all people at risk of HIV go to GUM clinics. In 2004 the Department of Health funded a number of HIV testing pilot projects which used a ‘results-while-you-wait’ fingerprick blood sample. They performed 1721 tests.³

A quarter of the gay men and nearly four in ten of the African people attending had never had an HIV test. The most common reason for choosing to test at the pilot project was because it provided same-day results, but a third of the Africans and one in ten of the gay men said they didn’t know where else to get a test.

Three per cent of those tested proved to have HIV (55 people) – more or less the same rate of new diagnoses as among gay men who test at GUM clinics. The pilot projects did not appear to be catching people earlier in infection, as the CD4 counts of those diagnosed matched those of people diagnosed in clinics.

Towards a national testing policy

In 2006 the US Centers for Disease Control announced that they would be recommending voluntary HIV screening for all persons aged 13 to 64 in healthcare settings, not based on risk, and annual HIV testing for people with risk behaviour.⁴ Basically, everyone would get an HIV test at some point.

Should the UK have a similar screening policy? Probably not. Here, HIV prevalence in the general population is a third of what it is in the USA, and our epidemic is more concentrated in Africans and gay men, so the US policy would not suit.

In the absence of a government policy, the UK HIV physicians’ organisation, BHIVA (British HIV Association), issued its own set of testing guidelines in 2008, in conjunction with the British Infection Society and the British Association for Sexual Health and HIV.⁵

They recommended a considerable expansion of HIV testing. They said that lengthy pre-test counselling (as opposed to just giving people information) should be eliminated. They recommended that testing should be ‘opt-out’: it should be performed unless patients specifically turned it down. And they recommended that it should be extended to, amongst other groups: women seeking pregnancy terminations; all individuals known to be from high-prevalence countries and their sexual partners; all patients with TB, hepatitis B or C and lymphoma; all patients with one of a list of symptoms suggestive of HIV infection; and all people admitted to hospital and newly registering with GPs in areas where the local undiagnosed HIV prevalence exceeds 1 in 1000.

Putting guidelines into practice

Issuing guidelines is one thing: actually putting them into practice is another. In the US, it was found, universally testing everyone who turned up at hospital was easier said than done.

A pilot project in New York in which triage nurses would offer HIV tests to all medically stable people over 13 as part of standard admission procedures managed to offer HIV tests to nearly 100% of patients,⁶ but only 6% of patients actually tested. Conversely, at a comparable project in Washington, DC, that had a specialist HIV test worker, only 10% of patients were offered an HIV test, but half of them accepted. We can imagine a world in which everyone registering with a doctor or turning up at A&E gets an HIV test, but cost and lack of time, not to mention reluctance among some healthcare workers and fear among some patients, mean that it won’t happen tomorrow.

Nonetheless, a number of new Department of Health-sponsored pilot projects were launched earlier this year to gauge the best way of taking HIV testing forward, and should produce results by this time next year.

New pilot projects

The pilot projects try to cover a variety of communities and to use a variety of ways to expand testing. They are:

• Leicester: HIV testing of all 15 to 59 year olds admitted to hospital. Because Leicester is an area on the cusp of the 0.1% general prevalence rate recommended by BHIVA, this will inform cost-effectiveness studies.
• Sheffield: piloting home-sampling test kits among MSM (taking a saliva-based test at home but getting the result back from the clinic by phone). In a previous pilot project run in Brighton, the return rate of home-sampling kits when offered was 80%.  
• Brighton 1: offering opt-out testing to all 15 to 59 year olds when registering with 19 GP practices. Brighton has ongoing ‘Locally Enhanced Service’ GP practices that deal with HIV (see HTU 184), which this pilot will complement.
• Brighton 2: routine testing of hospital admissions, similar to the Leicester project, but in a high-prevalence town.
• London 1: comparing opt-out testing in three different hospital settings: acute admissions, people having operations, and all accident and emergency cases, in three hospitals (Homerton, King’s College and Chelsea and Westminster)
• London 2 (Lewisham): opt-outHIV testing in up to ten local GP practices, including some with high numbers of black African patients.
• London 3 (THT): mobile HIV testing unit, going around money transfer shops and other venues frequented by Africans. Will use an “assertive case finding approach”, which means using interviews to estimate risk before offering a test.
• London 4: The GMI partnership/Positive East. GMI is an HIV prevention partnership for gay men formed by Positive East, the Metro Centre and the West London Gay Men’s Project. This pilot compares the acceptability of two testing approaches. One offers HIV testing as part of a general health screen to Africans at Positive East. Another uses either nurses or peer educators to offer tests to gay men at the GMI Partnership organisations. The acceptability of partner notification will also be tested.  

Martin Fisher is the HIV consultant at Brighton and Sussex University Hospital, who chaired the group that wrote the BHIVA testing guidelines. “I’m involved in the two Brighton projects, which we started in August,” he says.

Fisher is open-minded about which settings are likely to encourage more people to test and to increase the HIV diagnosis rate. “We need to find out where the BHIVA Guidelines were right and where they weren’t.”

He has some reservations about non-GUM testing sites, and particularly about the idea of community-venue testing.

“We have already had one pilot project in Brighton offering gay men a rapid test result in 30 minutes,” he says. “We did get a number of predominantly high-risk young gay men using the service as an alternative to going to a GUM clinic. But the point is that an HIV test is all they got. We encouraged them to go to the GUM for an STI check-up too, but most didn’t. As a result, we have just started offering tests for all blood-borne viruses (hepatitis A, B and C plus syphilis) when people attend our ongoing community testing service at [Terrence Higgins Trust] THT South.”

He also stresses that there’s no point in offering people HIV tests unless you have very good referral processes in place for those who do test positive. Next month HTU will look at the alarmingly high number of patients who disappear from care after getting a positive test result. Community testing without good clinical referral may increase the risk of them disappearing.

Finally, Fisher is concerned about the continuing problem of false positives given by the while-you-wait tests, at least in low-prevalence populations.

The kind of fingerprick HIV test used in ‘point-of-care testing’ (POCT) is up to 99.8% specific. What this figure actually means is that in a population where one in ten people has undiagnosed HIV, 982 in every thousand positive test results will be correct diagnoses and 18 will be false positives, which can be eliminated by confirmatory tests.

However in a population with only 0.1% HIV prevalence, only one third of positive test results will be correct, and two-thirds will be false, before the confirmatory test. Clearly screening such a low-prevalence population would generate a lot of needlessly anxious people. The kinds of tests feasible in community settings, without immediate hospital laboratory back-up, may only really be suitable for high-prevalence populations.

Informed by the results of the Department of Health-funded pilot studies, NICE, the National Institute of Health and Clinical Excellence, plans to write its own guidelines on what kind of testing protocols will best detect HIV for gay men and Africans. It has just issued the first public consultation, requesting input on exactly what these guidelines should and should not cover.

Why don’t we test?

We don’t really know yet what methods would generate more frequent and earlier testing in the UK. Should we have test rooms in saunas? Test tents at festivals? Test vans in the high street? Or should we sell tests over the counter?

All the people I spoke to stressed one thing: in the UK it will not just be a question of making HIV testing more available; it will be about changing the whole national culture around testing, and the way it’s regarded in high-risk subcultures.

“In the UK we have a paradox,” says Martin Fisher. “Universal free and confidential testing, yet people test much less than in the USA. There’s something weird going on. There is a real paucity of information about people who won’t test.”

One puzzling and troubling fact is that anonymous tests show about a third of all people attending GUM clinics with undiagnosed HIV remain undiagnosed after their check-up. This is a relatively small number of people, around 250 a year. Some may be people who know they have HIV but don’t tell the clinic, possibly for fear of a disapproval or even prosecution. But it may also indicate that it’s the people most likely to have HIV who are most likely to refuse a test. 

Paul Ward is Deputy Chief Executive of THT. He feels that one reason people don’t test so much is structural. “In the UK health and public health have been split,” he says. “The people who commission HIV testing have not been the people who commission HIV awareness and behaviour-change programmes.”

THT has been slowly extending the range of community testing programmes it runs. The relative success of the 2004 pilot led to the THT offering their ‘FasTest’ service at 34 locations, 16 of them in London.

In London it has been running a service for the African community at Peckham Pulse healthy living centre (now run by the Metro Centre), and for gay men it runs HIV testing clinic rooms at two gay saunas, Chariots Limehouse and Shoreditch. But in the saunas the results aren’t given ‘while you wait’. “All the samples taken get sent away,” says Ward. “We feel it’s inappropriate to offer people results at a sex-on-the-premises venue.”

General unease about what might happen if people received a positive HIV result when drunk or high has held back community-venue testing in the UK for a long time. In 2006 a study of attitudes to POCT amongst NHS staff, commercial gay venue owners and HIV-positive gay men uncovered a general sense of unease about such testing that was exemplified by a remark made by one interviewee that ended up as the paper’s title: “There is such a thing as asking for trouble.”⁷

Four areas of concern were identified by the investigators: confidentiality; the appropriateness of using ‘fun’ venues for such a serious health matter; the provision of support for individuals having a rapid HIV test; and, the potential impact on venues offering tests.

All understandable cautions: yet strange-sounding when compared to the HIV testing programmes offered by some gay bathhouses in the US. Some bathhouse chains like Steamworks have been offering HIV testing since the early 1990s and a survey done back in 1996 found that 40% of 104 bathhouse venues in the US already offered on-site HIV testing.⁸

GPs and testing

Another question often asked is why GPs (and non-HIV doctors in hospitals) often fail to offer HIV tests to patients – even, in many cases, ones that have symptoms strongly suggestive of immune suppression.

Two UK studies have found that 70% of Africans testing HIV positive had visited a GP in the year before diagnosis,⁹ and 40% of gay men accessing healthcare because of symptoms due to primary HIV infection were not tested.¹⁰

As a result the BHIVA guidelines include a lengthy list of ‘indicator diseases’ that should prompt an HIV test and the Medical Foundation for AIDS and Sexual Health (MEDFASH) issued a guide for non-HIV specialists on diagnosing the undiagnosed in 2008.¹¹

Paul Ward feels “we haven’t made much progress on the GP issue. In my opinion, in order to engage GPs, you have to pay them! It’s clear from chlamydia screening that you have high rates in areas where GPs are paid a per-test fee to do it and low rates where they’re not.”

Lisa Power, THT’s Head of Policy says: “I think it’s because GPs generally don’t like talking about sex to patients. BHIVA has made good links with people in the Royal College of GPs who are specifically interested in HIV but they don’t represent the average GP.” Sally Whittet, a GP in the UK’s highest-prevalence area, Lambeth, feels that attitudes are changing, however.

“Yes, some GPs and practice nurses are still hesitant to bring up the subject, I think particularly with African patients because they don't want to appear discriminatory or judgemental. However in the London areas where I lecture on HIV most of the attendees are keen to diagnose more HIV. The whole point about demystifying HIV testing for doctors is to say that as long as you can refer people to appropriate care, you don’t have to be an expert.”

Home testing

What eventually happened to chlamydia tests is that high-street pharmacies started selling them. Will we ever see people buying HIV tests at their chemist?

In the UK and indeed in the US buying a test that will give you an HIV result in your own home is illegal, though they are not hard to obtain over the net. It’s never been illegal to buy a home-sampling kit that you send away to a laboratory. In the US, the Food and Drug Administration has been investigating HIV home-testing for years, but the stumbling block has always been how to put in place adequate support and referral structures.

Lisa Power dismisses some of these fears. “We used to hear the same arguments about pregnancy tests,” she says. “Women would go off and do something stupid, the tests were unreliable, and so on. In fact everyone knows pregnancy tests are not 100% accurate and women generally do two or three tests to make sure. And everyone knows that if you test positive, you go to the doctor.”

THT is calling for home testing to be legalised and regulated, with licensed kits that would also include information and phoneline referrals.

“People are buying poor-quality tests off the net anyway. Wouldn’t it make more sense to make high-quality tests people can use in the privacy of their own home available?”

She also says it’s irrelevant that some people might repeatedly test for HIV instead of finding better ways to manage risky behaviour or anxiety about HIV: “We need to start treating repeat-testers as adults. Insisting they go to a doctor every time is a waste of resources.”

To make home testing reliable we will need to learn more about the motivations of repeat testers and how often people will want to use test kits. If it turns out that many people would want to use home test kits whenever they think they have taken a risk, the ideal home test would need to be one that can detect infection as early as possible, as well as being cheap and rapid.

Generating awareness

In fact, the problem with testing is not the ‘worried well’, but the fact that not enough people are worried. When people diagnosed late with HIV are asked why they didn’t test earlier, by far the most common answer is: “I didn’t think I’d been at risk.”

For this reason, HIV testing is as much about putting people in the frame of mind to test as it is about offering testing everywhere. Here the tried-and-tested methods of mass- and small-media campaigns are being used, with THT putting on a new Department of Health-funded ‘Think HIV’ campaign (see www.thinkhiv.co.uk), encouraging people to take seriously the possibility they might have HIV and emphasising the ease of testing.

Valerie Delpech feels we have a long way to catch up, but we will. “In ten years time I think we will see tests on sale in chemists,” she says, “and we’ll wonder what all the fuss was about.” She warns, however, that extending testing will not abolish HIV: “In Australia, HIV prevalence in gay men has not gone down despite 95% testing. But it does mean they’re turning up earlier.

GP Sally Whittet agrees. “I doubt if expanding HIV testing will reduce transmission. But it should reduce morbidity and prolong life.”