My heart sank.
I’d just put the phone down. A friend’s routine test results had shown up Hepatitis C. Again. The first time was just two years ago. On top of HIV. Now he has to face it all over again, with the added complication of being on HIV therapy. Despite everything, he wanted to get started on HepC treatment as soon as possible. With new treatment, there was a good chance of clearing the virus.
This is probably all too familiar to some readers. Unfortunately. A recent study reported that of gay men in London infected with HepC, a quarter go on to be reinfected, some even for a third time. Most of those are also HIV positive. What’s come to be dubbed ‘chem-sex’ seems to be a common factor, with increasing numbers of gay men experiencing problems with their drug use, some of it related to injecting. But it’s not the full explanation. London may be an epicentre, but it does not represent the whole of the UK, and by far the population with the highest risk are people who inject drugs.
Many cases of HepC infection in gay men have no London or other high prevalence connection, no injecting, sauna or sex club links. In another context, mobility is associated with higher levels of HIV and STIs, with ‘migrants’ (defined as anyone living outside their home country) experiencing greater difficulty accessing services, higher levels of drug use, and loneliness. At closer range, light and occasional drug use or heavier sex doesn’t explain HepC infections. Some people can’t work out how they got it.
Away from the debate around London’s rising rates of HIV and HepC, occasional drug use can turn out to be problematic. An elated feeling, a sense of invulnerability and an illusion of control prepare the ground for HepC. And HIV. Community events in London have started to share information and ways of providing support. David Stuart of Antidote calls for the “brave pursuit of some unattractive truths, and raising awareness of some dangerous Chem-Sex trends that are devastating parts of our gay scene/communities” (Lancet article “New HIV diagnoses in London’s gay men continue to soar”)
Given that Stuart’s experience with Antidote, London’s only specialist gay men’s drug problems service, his voice represents the the needs of gay men with substance misuse problems when he says, “We need to support the sexual health clinics and substance use sectors to do shared, tailored work, and improve targeting and monitoring so empirical data can qualify this anecdotal concern”. The National AIDS Trust’s proposed raft of measures to tackle injecting drug use, only go to show the extensive ground tragically lost or perhaps never gained in drug related HIV and, now, HepC prevention.
London is not representative of the UK, and neither does the city’s gay club scene reflect London itself or gay men generally. We must beware of falling easy prey to moral panic. In our new Puritan era, sex and porn stir public and political outrage. This is a mistake, and it is hypocritical. Overdose deaths, soaring rates of HIV, and reinfection with HepC don’t happen without a hinterland, which we all inhabit. In a plea for balance and perspective, one commentator argues that it is dangerous and irresponsible to blame the rise in HIV on ’gay sex parties’.
One risk of focusing on more extreme and sensationalist drug use is that we ignore important social, pharmacological and individual factors. A second is that it reinforces the ‘otherness’ of HIV and HepC, and in turn, a blaming and shaming culture.
One or more cases of co-infection and re-infection are not the only story. You probably know friends whose relationship teeters forever on the brink because one can’t cope with the other’s drug use. Or it’s on the rocks due to alcohol problems. It really isn’t ‘cool’.
Neither are co-infection and re-infection the full picture. You can read ‘Adam’s story’ on UK positive lad’s blog. Similarly, someone else was contacted by a guy he’d fancied for a while and invited him round. He had a great time. A great time that is, until the HIV meds in the bedside cabinet gave away his secret. He was HIV-positive, and his visitor got nasty about it. No matter that the positive guy’s viral load was undetectable or that he used condoms and had only safe sex. Familiar? What happened afterwards persuades me, if I needed persuasion, that efforts to tackle HIV stigma need to start with gay men themselves. Now there’s the stigma of HepC, if anything, even greater.
Forget anti-stigma campaigns directed to fellow underground passengers and the like. As gay men, we need to know about safe sex, preferably early in the school curriculum, what it’s like to live with HIV or HepC, how it feels to face ‘HIV/HepC whispers’, and to be landed with full responsibility for telling and protecting a sexual partner. In order to tackle problem drug use among gay men, regardless of how prevalent or serious, we must deal with our own hinterland of stigma, ignorance and denial, as well as the challenge of city clubs and parties.
The bad reaction in that particular instance made the start to HepC treatment even more difficult. Think about HIV. Now add HepC, treatment side effects, and the pressure of trying to hold down a job while feeling rotten, and having to slip away for weekly hospital appointments. Mix in the clinic’s messy, unconventional HepC treatment initiation, assumptions about drug use, and poor communication with the HIV clinic. Individual tailored support is a flimsy prospect when your HepC clinic won’t even take blood for a CD4 count or fit appointment times around a patient’s needs. True, this experience may not be typical of HepC clinics but there is no excuse for it anywhere.
A brief observation is that there is a wonderful vocabulary of patient engagement and advocacy around HepC and HIV. It can help if more than words, and if not is mere lip service. Sometimes, it can even be counter-productive.
Staff training and practice must be improved to be about more than the mechanics of handing out medication or even clinical expertise in hepatology. Expertise in co-infection from whichever source, is an essential. Drug problem services must be more flexible to prevent gay men who don’t fit the usual service user profile, having to go from pillar to post. This is my nomination for an equalities agenda closer to home for community and campaigning organisations after equal marriage settles in.
I can only imagine how heart-sinking it must be to catch HepC, especially on top of HIV. But treatment, especially now with the addition of a third HepC drug, gives very real prospect of clearing the virus, even for a second time. New drugs in the pipeline will improve things even more. Strong policy recommendations and increasing awareness and information provision, on HepC and co-infection (eg infohep) will help.
Meantime, we need to reach the undiagnosed, resource and standardise treatment and care, and find out the best way of dealing with what’s on our own door-step. A nascent community response, if supported and not highjacked, is already promising.
(See the latest stats on ‘Hepatitis in the UK’, here)
From the moment someone sits down to be told that their HIV test result has come back positive, they set off on a journey. Because there is no cure for HIV, that journey is for life. At that first point of diagnosis, trying to see the road ahead can be like plotting a way through a bowl of spaghetti.
At this stage and later, a map or pathway of the journey is helpful. For both patient and healthcare staff the first three months can be complex. At this point, it’s important that patients and healthcare staff begin to share information and know what to expect.
This is not left to chance as each part of HIV care and treatment services must meet standards and guidelines set out by the NHS and by bodies like the British HIV Association. In Scotland, NHS Healthcare Improvement Scotland specifies in its HIV Standards that each NHS Board must have and use a document known as an Integrated Care Pathway (ICP) for people living with HIV. In other parts of the UK, clinics have developed pathways.
We need these pathways so that we know what will happen if we need to be referred to another part of the hospital, how the HIV clinic links with our GP, to record results of blood tests like CD4 and viral load, and to make sure that nothing is missed. Care pathways are not unique to HIV, but are used in other health conditions too.
To understand more of how Integrated Care Pathways work for HIV, it is helpful to outline what an Integrated Care Pathway is and how it works.
First of all, it serves more than simply a record of patient care. What makes it different to a set of case notes, is that it sets out how healthcare is organised, co-ordinated and governed. These aspects make it clear which member of staff within a healthcare team is responsible for specific parts of the journey through the healthcare system. It also connects the care provided with the research and evidence set out in the Standards and guidelines, which help patients and doctors decide on the best way forward.
Later, we will look briefly at the steps in a patient journey, but it is important to note that Standards apply wherever one lives. Local circumstances and patient preference mean that the exact means of achieving that Standards will differ, but in general they are the same based on the best evidence and experience.
Because the ICP is not a single-track line, but a map that takes account of when we might divert from the usual route, it is a way of recording variances. The real-life route is all-important in this regard. It is not an excuse to deviate from the Standard, but allows a degree of flexibility. That flexibility, however, has to be to the benefit of the patient because an ICP must be patient-centred. Recording the variances in the experience of patients allows a comparison between that’s planned and what’s real. Wherever that happens, there ought to be a note to explain the variance. Once a number of these notes can be analysed, this forms a basis for the continual development and improvement of clinical practice.
Use of an ICP doesn’t make the management of HIV any less complex, but it does simplify the process and ensures that each step is followed. The fact that core information is brought together into one document reduces the potential for important information to be missed when making decisions about next steps in care and treatment.
The fact that the ICP is linked to sets of standards and guidelines, allows for the document to be designed and used in such a way as to be used to audit and scrutinise clinical care, as well as to act as a tool in care and treatment management. In Scotland, where NHS Healthcare Improvement Scotland requires specific and improving standards, as well as equity of access to a set of services regardless of location, this serves as an important tool for scrutiny of NHS Board performance.
In essence, the ICP document describes for both the patient and the healthcare staff what is to be done, by whom and at what stage. Once this is in place, then it will act as a kind of Sat Nav system so that the bowl of spaghetti looks more navigable, and less confusing than it did at the time of diagnosis.
If one considers that in the first three months alone, there are potentially over 100 processes ranging from a confirmatory HIV test to recording a CD4 count, it is possible to grasp that good care needs to be well managed. With all the effort and stages, the ICP helps to prevent a patient duplicating the same tests unnecessarily, and also avoids delays. It is a way of staying on track with keeping the next appointment, understanding when and when not to go to the GP, who we might speak to if we need extra help, and to check whether or not medications are about to run out. When it is shared and explained, the ICP helps us to make better sense of the HIV journey.
Definition of an Integrated Care Pathway:
“An Integrated Care Pathway is a tool, which is locally agreed, multidisciplinary, based on guidelines and evidence where available, for a specific patient/client group, forming all or part of the clinical record, documenting the care given, facilitating the evaluation of outcomes for continuous quality improvement.”
Sue Overill, Journal of Integrated Care (1998), 2, 93-98
Integrated care pathway
A crucial aspect of an Integrated Care Pathway is that it reflects the patient needs and journey. It has to be ‘patient-centred’, a term which is often bandied about to the extent of being meaningless, but in this context is vital as the ICP has to be as close to real life as possible. It is to improve patient well-being in every aspect, and not simply to fit what’s convenient for the clinic.
For it to work properly, two factors follow logically and practically. First is that for the plan to work, patients need to be consulted and to participate in forming the plan. This might be by a discussion with a number of patients, or through a patient questionnaire or a combination of both. Although not every patient can take part, if there s something about your care that you don’t understand, or something that would help you in particular, it is always helpful to discuss it with your doctor or other healthcare worker. In Scotland in the next few months when ICPs reach a next stage of development, you might find that you are asked to participate in a clinic questionnaire to help with the planning of care that meets the national Standards.
Secondly, it depends also on good co-operation between patients and healthcare staff. For example, staff are expected to record a CD4 and viral load count within a certain number of weeks, or have a discussion about how to look after your own health or protect sexual partners. Keeping appointments on the patient’s part might seem too obvious, but this simple contribution is important to getting the best care based on the Standards.
HIV Integrated Care Pathway
During the first three months, an ICP would set out a number of fundamental aspects of future care, including:
History, e.g. diagnosis, sexual and drug history, psychiatric history, and history of allergies.
Examination, e.g. neurology, body fat distribution, checking inside the eye.
Investigations, e.g. confirmatory HIV test, resistance test, partner notification, key staff and consent to contact GP
Screening, e.g. cervical screening for women, CVD risk, and cognitive screen where necessary.
Ongoing care, advice on reducing sexual and drug risks, partner notification, needs of any children, psychological support and consent to contact GP.
Over time, other aspects of care, including referral to other healthcare professionals form part of the ICP.
In summary, use of ICPs improves HIV care through:
NHS Healthcare Improvement Scotland will host a further HIV Services ICP Learning Event in September 2013 when more work will be done to coordinate ICP development that supports clinics and services across Scotland.
If you want to read more on Integrated Care Pathways, here are some links:
This blog first appeared as an article in Baseline Magazine, July 2013.
This is the first of 3 blogs on HIV Home Testing, following my first on "HIV Testing: how can we build on success?" of a few weeks back. Scroll down to find the full series. Comments welcome!
One solution being proposed for the improvement of late and undiagnosed HIV is a change in legislation to allow for the introduction of home testing.
Under the legislation, it is an offence to supply or advertise HIV testing kits other than under the direction of a registered medical practitioner, and is based on their classification as of high risk to individual and public health.
The argument for home HIV testing is that anything that increases testing is bound to be good, especially in the comfort and security of your own home. I will say it only once, but not all homes are comfortable or secure. This article asks questions of the policy.
Firstly, however, it is useful to sketch in some background.
When I first heard it mooted that HIV home testing kits should be legalised, I asked the opinion of about five senior HIV health professionals from psychology, clinical care, epidemiology and public health, all of whom were decidedly against. It led me think a change in legislation unlikely.
To be fair, advocates of home testing include influential and respected figures, like Dr Steve Taylor of Birmingham Heartlands and the ‘Saving Lives’ charity, which is making significant impact on the promotion of HIV testing by bringing together the world of sport and entertainment, positive people and professionals. Dr Myron Cohen, another proponent, concludes that, ‘It’s hard not to be fully enthusiastic’.
This article sets out some learning and thinking based on my reading and discussion with people of various views.
There is an important legislative and practical difference between ‘home testing’ and ‘home sampling’, which will emerge in my discussion.
With home testing, an individual receives or purchases a test kit, which they self-administer before receiving the direct result in a matter of minutes without the involvement of any other individual. Arguments for and against touch upon a number of factors. Fundamental to policy and practice are the reliability, utility and safety of the test itself and its administration. When the FDA issued its 2012 approving home testing for sale in the United States, the now familiar ‘comfort and security of your own home’ used by manufacturers and campaigners alike was a key message.
Significant data from the same press release, however, received surprisingly scant attention. Clinical trials of Oraquick, the FDA approved test, recorded no fewer than one in twelve false negatives. Here is the quote:
Clinical studies for self-testing have shown that the OraQuick In-Home HIV Test has an expected performance of 92 percent for test sensitivity, the percentage of results that will be positive when HIV is present. This means that one false negative result would be expected out of every 12 test results in HIV-infected individuals.
One of the criteria set by campaigners in favour of the supply of home testing kits is to enable regulation to avoid the serious risk of false negative and false positives. Yet at the first hurdle, the OraQuick saliva test stumbles and falls by its own published results.
Not only so, but the home testing kit cautions what is a sub-optimal three-month window period in contrast to the much shorter fourth generation clinical standard advocated by campaigning organisations.
The ‘improvement’ of HIV testing has to be more than increasing the potential number of new tests. Safety and quality of the HIV testing experience are paramount.
Supply and advertising of home HIV testing kits remain illegal. Home sampling, however is different and is within the law.
I will be careful not to confuse the two, though inevitably there are parallels. In both cases, it is likely that they would be ordered over the internet and delivered by post, as the only way to date of obtaining the testing kits. In the USA they are stocked now on your local Walmart supermarket shelves.
By its nature, home sampling is subject to regulation, which requires that a clinician be involved in the provision of test results. The provider has to be approved by the Care Quality Commission, and the kit compliant with MHRA regulation. The MHRA also provides information to the public on the safety of self-testing kits in the UK.
Currently in the UK, Dr Thom’s ‘remote’ healthcare has cornered the home sampling market and is used by three London-based bodies, Dean Street NHS clinic, GMFA, and by the Terrence Higgins Trust in collaboration with the HPA. Dr Thom’s home sampling comply fully with the regulations and results are confirmed by a laboratory test and communicated either through a patient’s online record or by telephone.
A key argument in favour of legalising supply and advertising of home testing kits is that it would facilitate their regulation. A familar argument. Aside from the earlier point, regulation would not control access to the kits, nor necessarily inappropriate, coercive or mischievous use. The burden of proof sits, I believe, with advocates of a home testing policy. Advocates tell us that kits are being purchased over the internet despite the legislation, so it would be helpful to have more information even if anecdotal, of, for example, the number and demographics of those individuals who have used home testing kits and self-diagnosed as HIV positive.
Once the supplier has posted a home testing kit, responsibility passes to the customer, and its benefits or otherwise are reliant then upon individual understanding and self-administration, as well as upon home storage conditions. Home sampling on the other hand requires the return of the sample to a laboratory for testing. The result is communicated according to a protocol and there is access to trained and clinically supervised staff. Home sampling is similar therefore to processes in community outreach clinics for people who use and inject drugs, or for men who have sex with men.
It is appropriate to take a step back to identify which problem a change in home testing policy seeks to address and how it will achieve its goal. In the case of home sampling, the target audiences currently are gay men and, to a lesser extent, Africans. We assume this priority would be the same for home testing. Except that a commercially available home testing, as opposed to home sampling, kit is less easily targeted. Once legal, company profits and market flux in home testing kit supply would trump our national health strategies and epidemiology.
Encouraging results in community testing and postal home sampling have been reported, with the greatest impact in areas of high prevalence for HIV such as Brighton and some parts of London. With strong leadership, similar multiple initiatives supported by primary care and A&E collaborations, could be adapted successfully to local conditions outwith London. While we await evaluation of the impact of FDA approval in the USA, would it not be better to put our resources behind scaling up and intensifying of what we know works rather campaigning for home testing?
Acceptability of prospective home testing seems to be high among key populations. How might this translate into action genuinely to improve the quality and experience of testing, and of its individual and public health benefits?
If we take home sampling as a proxy, an exploration by the HPA of expanded healthcare and community testing found a return rate for postal home sampling of 47%. In another study of negative partners in a relationship with someone positive, 90% accepted an oral fluid home sampling kit rather than attend the clinic for a test, suggesting that highly targeted home sampling is feasible, convenient and reliable for annual testing (BHIVA, March, 2013). Acceptability of around 60% in key communities is proposed as a basis for opening up home testing to the general population, without clarifying how.
With some people experiencing symptoms being missed as they are by health professionals, how likely is it that they will click on ‘Buy Now’ for an HIV home testing kit? Recognition and diagnosis in this important group will be addressed more effectively through improvede generalist clinical awareness of indicator conditions.
In fact, commercial marketing might work in the opposite direction. It is worthwhile viewing OraQuick’s home testing advert. Compare it with public responses by the generally fit, young and sexually active public on social media, such as Twitter and Facebook. Mostly, they’re sceptical and dismissive of OraQuick’s HIV test kit sales slogan, ‘It’s everybody’s thing’.
In recent Huffington post articles, the author advocates a ‘mobile’ or ‘remote’ healthcare revolution and recommends repeal of home HIV testing kit regulations. The author was the CEO of the private ‘remote’ healthcare company, ‘Dr Thom’. She declared her interest part way through one article, but one can imagine the outcry were commercial tobacco and alcohol interests so blatant.
The recent shift of contracts for diagnostics away from NHS to private providers in England offers an interesting context.
Principles of inclusion, transparency and openness apply regardless of sectoral or financial interests, and sponsorship deals, especially if there’s a public consultation. Public benefit and not sectoral or organisational interest must be the sole criterion. The recommendation (364) for repeal of the Home Testing Kit Regulations (1992) in Lord Fowler’s ‘No vaccine, no cure’ report came out of the blue with no discussion far less evidence in the report itself. There must be a clear distinction between service provider and political or campaign interests.
Two aspects of legislative change need careful consideration. The first is that generally UK regulation in the area of medical devices implements EC Medical Devices Directive into UK law. The HIV Testing Kit Regulation, however, exists in its own right, standing apart from European directives. The basis for the current MHRA review of European directives is consistent with concerns such as, insufficient or unsatisfactory medical evidence relating to safety and performance, imprecise post-market surveillance by manufacturers, and inadequate coordination and transparency.
Secondly, a change in legislation to permit sale of HIV testing kits could affect the rules for sale of other diagnostic kits. It might be argued that this would help to mainstream another aspect of HIV. Beware, however, of a double-edged sword.
Innovative delivery and new technologies opening up real options in HIV testing, aside from home testing. HIV testing is not an end in itself, but an opportunity to assess risk, and a first step to integrated care. In both, the quality of the testing experience largely determines the outcomes in terms, for example, of linkage to and retention in care.
Our HIV testing policy must see beyond numbers. It must drive the implementation of standards set by BHIVA and Healthcare Improvement Scotland. Standards rooted not only in clinical evidence but also in the experience of people themselves living with HIV.
The vocabulary you might hear at the parties and in the saunas and clubs includes words and phrases like ‘chem-sex’, drug-f****d’, and ‘slamming’. Get the feel of it?
Recently, a London gay venue held an event to share information and thinking on the growth in use of new drugs like crystal meth, GBL and mephedrone in sauna, club and party scenes. With drugs like ecstasy now accepted as part of a normal week-end clubbing for many gay men, the switch in fashion to other drugs, their easy availability, and their serious health and social harm have left community leaders not to mention the community itself with a ‘chem-sex’ problem.
This is a serious issue and has been crying out for attention long since. Why, to cite just one example, when individuals overdosed and died on a sauna floor, were no critical incident procedures put in place to inform users? It would have been unthinkable had there been overdose deaths on the streets of Leith or Pollock.
Although the range and severity of drug problems may have risen and come to light only in the last three years, their gestation has taken much longer. We need to be cautious of identifying the problem with specific drugs. Drugs go in and out of fashion and their availability can suddenly fluctuate. Think back to our moral panic when ecstasy first caught the headlines, and further back to heroin and speed.
The scene described is, to use an unfortunate simile, the tip of the iceberg. The wider use of alcohol and other drugs sits on the same spectrum and although a specific gay social networking context facilitates the ‘party’ aspect, we need to see this as a problem of the individual, the environment and the drug.
For every slamming in a London dark room, there are hundreds more getting into various degrees of harm across the United Kingdom.
In case our picture of the problem drug user in this frame is seen as a stereotypical poorly educated, ‘Trainspotting’ daft laddie surviving on what he can beg, steal or borrow, let me disabuse you. It’s people like you and me. Probably someone who has discovered drugs in his thirties, holds down a reasonable job, and manages a holiday abroad with his boyfriend now and again. Far from being unsure of his sexuality, he is likely to be relatively confident and assertive, like you and me.
We are not well placed to tackle this problem. An example is found in the minutes of a Scottish Government Advisory Committee meeting which noted the ‘disconnect between Hep C and HIV testing and limited HIV testing in addictions services’. In practice, in clinics and outreach, there are some nurses and doctors, workers and volunteers dealing with people newly diagnosed with HIV and HepC with neither the knowledge nor the right attitude even to begin to handle any underlying or even very occasional drug problem properly.
This is bizarre, given how closely specialist drugs agencies and HIV organisations worked together in the early days of the drugs and HIV epidemic, especially in Scotland. Although there are islands of knowledge and skills in organisations like Crew 2000 in Edinburgh’s Cockburn Street, and the HIV Carers based in Govan, Glasgow, much of the expertise is lost. In the HIV field, maybe we have grown more comfortable with champagne celebrity fund-raisers and equal marriage campaigns. We have to find community roots again.
The role of 'Antidote' in London is crucial as it brings expertise in addictions and in sexuality. Other specialist drugs agencies need to be much more aware of the needs of gay men on and off this scene and how to deal with it. In my view, HIV and sexual health organisations need to focus on what they’re funded to do, and on what they are competent to deliver. They need to support specialist drug agencies (and vice versa) rather than set up yet another reactive project that will obviously need money. Money that doesn’t exist, not unless it’s taken from someone else’s mouth.
From a drugs policy perspective, the debate and the solution to drug problems experienced by gay men must avoid a novel solution falsely imagining that gay men are so different to the rest of the population that they need something qualitatively distinctive. We don’t. Policy needs to be grounded in a harm reduction approach and interventions must be based in evidence of what works. There is ample research and practice data and example to follow. Learning and links across sexual health, HIV, drugs, hepatitis C and criminal justice are essential. There is little time to delay. Action rooted in tried and tested policy is needed now.
For those attending clinics and primary care, specialist drug agencies need to be part of the package of integrated care, either sitting in the clinic or readily available when someone presents with a problem.
Please remember also that this is not exclusively London’s problem. Many men travel for sex and drugs, other cities have lesser scenes, and in some areas those getting into problems with their drugs feel isolated and unlikely to know where to turn.
The solution therefore, must be developed on a national basis (England and Scotland, Wales and Ireland, Vauxhall and Hull). It might help therefore if people were to talk to one another across boundaries with specific attention paid to Scotland’s Sexual Health and BBV Framework.
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.
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.
With the news today dominated by headlines such as "Early HIV drugs ‘cure one in 10’", prevention and testing for HIV need to be included with the information.
The benefits of HIV treatment for people living with HIV is already well known. At the same time, knowledge of what it’s like to live with HIV or how to protect oneself is in decline because of the lack of education in schools and communities.
How many know that HIV is at its highest point ever among gay men in the UK, and that heterosexual infections are also at high levels?
A useful summary and reference to the latest research in this area can be found in aidsmap “Very early antiretroviral treatment limits the size of HIV reservoir. People treated very early may be ‘prime candidates’ for HIV cure studies”
Research in this area is not new, and the concept of limiting the size of the HIV reservoir, and flushing it out to eliminate it through use of antoretrovirals was proposed over ten years ago by David Ho. Recent research studies highlighted in the media indicate ‘proof of concept’.
The real meaning of ‘cure’ needs to be explained carefully to the public. It is not a cure in our common understanding of that term. It might be more accurate to describe it as ‘control’ of the virus. The studies to date depend upon a number of factors, such as treatment within a very short space of time after infection. This in turn depends upon early testing or recognition of symptoms which is unusual but for a small minority of individuals.
In reality, some 24% of people living with HIV in the UK have not been tested since their infection, and are unaware that they have the virus.
In the UK, 50% of diagnoses are already ‘late’, ie diagnosed with a CD4 count below 350, and therefore at a stage at which they qualify for treatment. 25% of all new diagnoses have a CD4 below 200 and in the danger zone for serious complications.
While the media do well to report these few cases which are interesting to the public, we need to emphasise that in the French study cohort, only 14 managed to ‘control’ the virus to the extent of ‘functional cure’. Another 70 who also discontinued exactly the same treatment failed to control the virus, which rebounded with more serious effect upon their health.
People on HIV therapy must not stop their treatment, and if they plan to do so, then they must consult their HIV specialist doctor.
Equally, those at risk of HIV must take precautions to protect themselves and their partners by practising safer sex by using condoms, and in the case of drug injecting, clean injecting equipment.
We all look forward to a true cure, and these studies indicate that we might one day be successful. It is a long way off, however, and meantime we must maximise all of the prevention and treatment options that we know work.
A major problem is that millions world-wide have no access to treatment, one million die of HIV every year, and even in countries with good health coverage for HIV, rates of new infection outstrip the numbers going on treatment.
One thing is sure: a cure is closer now than it has ever been. And we need it more than ever.