scotfreehiv

The only way to a Scotland free of HIV is by fostering positive attitudes and promoting understanding. This blog shares information and thinking about public health and the prevention of HIV. I would like to think that it’s relevant to people living with HIV. It would be great to hear what you think. Follow me @RoyKilpatrick1

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Don't Take a Fling on Scotland's Health

In 667 pages of the Scottish Government’s white paper, ‘Scotland’s Future’, a mere sixteen were dedicated to ‘Health, Social Care and the NHS’. The future of the NHS in Scotland, became a key battle-ground in the middle of August. Nationalist claims of privatisation and funding cuts to our National Health Service if Scotland remains in the UK have polarised the country. I’ll argue that in fact it is unnecessary and wrong for health and especially public health to be so cheaply politicised in this way. EVIDENCE Firstly, the Scottish Parliament’s devolved powers have acted as a bulwark against Westminster reforms. The White paper itself states, “The advantages of making decisions for ourselves are clear”, while asserting that, “without devolution, the NHS would have been repeatedly reorganised by the Westminster Government of the day, regardless of the needs of the people of Scotland.” It gets perceptibly excited on the benefits of devolution to health. Threats to our NHS are mere shadows of a midnight bogeyman on the nationalist bedroom wall. Westminster has not sought to impose its reforming zeal on Scotland, Holyrood has held to traditionally collaborative models of healthcare planning and delivery. Arguably it is too traditional in its hesitance to follow England’s example by breaking down hierarchies in favour of patient and community voices. Indeed, ‘divergence’ best marks health policy in Scotland vis a vis England’s. True, not only since the Coalition took power in Westminster in 2010, but throughout devolution’s short history under different political leaderships since 1999. Alex Salmond himself has said that nobody can force Scotland to privatise its health service. That full control over health is a good news story is universally recognised. Health colleagues south of the border share the view, envious of the stability NHS Scotland enjoys. Although the White paper intention is to maintain UK links, it would be retrograde were independence to diminish shared learning, advice and regulation across the UK. Innovation and economy of scale within the UK’s NHS framework are not accidental. A UK-wide NHS with both formal and informal networks, is ranked as amongst the best in the world. By disrupting these bonds, the SNP’s ambitions would create further fragmentation and uncertainty for the NHS THE SNP CASE On health, however, some jaggy nettles have to be grasped. The Barnett Formula, warns the SNP, is a vehicle not only for Westminster hand-outs to a cap-in-hand Scotland, but a Trojan horse of funding cuts and privatisation. First flaw in that argument is that Barnett applies not to the bloc grant, but only to ‘cosequentials’, changes over and above the annual health allocation (1). Secondly, NHS funding has increased annually in England, matched under Barnett by increased funding to Scotland. The SNP Government failed to pass on these increases, choosing instead to apply the money to its own populist agenda. Indeed, to balance the books, they steadily increase use of private health care within our NHS. All without blushing. The SNP Government seeks “the economic and fiscal levers currently controlled by Westminster, to set policy to Scotland’s circumstances, strengths and preferences.” In its wisdom, the Scotland Act 1999 legislates for tax varying powers. They have never been used. Instead, a costly and divisive referendum has set the clock ticking towards substantial public service funding gaps (IFS). Hoping to trump all, the SNP includes a right to healthcare in its draft Constitution (2). But existing human rights law already entrenches such provisions, bolstered by legislation establishing and defining the NHS. An intention to build the NHS into the foundations of an independent Scotland, though laudable in its intention, is unnecessary and would become a happy hunting ground for legal challenge. In summary, privatisation can happen only by the decision of our Parliament No party there has any such intention. THE REAL CHALLENGES Inequality is the root of Scotland’s poor health and well-being. The SNP damns the obscenity of poverty in a nation so rich, a sense of affront shared by us all. Inequality is ingrained in a complex mix of social, cultural and economic factors. Reference is often made to the ‘Glasgow effect’, best illustrated in the very different life expectancies of boys from affluent Lenzie (82) and, just seven miles away, deprived Calton (54). The nationalists fail to spell out how their independence project can even begin to improve a situation, which has baffled our best-laid schemes for over half a century. Nationalists might rage against the machine, but ingrained poverty is best tackled in unison with cities across the UK. For inequality to be tackled, Scotland must build on successes like tobacco controls, reduced cancer mortality rates, or the promise of minimum alcohol-unit pricing. A more crowded and competitive independent government portfolio, however, would be hard pressed significantly to progress the health agenda in Scotland. Research and healthcare innovation, in which Scotland’s Universities excel, receive 13% of all funding, a proportionately high level for Scotland’s 8% of the UK’s population. Why erode such an advantage to the health and well-being of Scotland’s people for the sake of political vanity? Let’s develop our distinctive education system and research strengths within rather than separate from, the UK. Under our Parliament’s devolved powers, health has improved with prospect of longer-term benefits. Independence is not the logical next step. Instead of using health as a ping-pong ball, cooperation and sharing our strengths and talents within an interdependent UK is the way forward. (1) http://paulcairney.wordpress.com/2014/08/11/what-is-the-barnett-formula/ (2) http://www.scotland.gov.uk/Resource/0045/00452762.pdf

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The Commonwealth's HIV record

The Commonwealth Games opened in typically gallus Glasgow style. Sometimes bonkers with Donald running around with neither kilt nor troosers, and with dancing Tunnock’s Tea Cakes, Glasgow and Scotland nevertheless made a point about our nation’s inventiveness and skill in a ‘Here’s Tae us, Wha’s like us’ way. It also struck out for generosity and solidarity raising over £4 million for UNICEF. Then of course for equality with two out gay and lesbian presenters, the Barrowman kiss (not to be confused with the Glescae kiss), and the rainbow flag hoisted above St Andrew’s House for the duration of the Games in recognition of Commonwealth ‘diversity’. The Commonwealth Federation brings their Games, confident in the transformative force of sport, a belief familiar to Saving Lives supporters. The Games are meant to be an entertaining and unifying tool for education, gender equality, and youth empowerment. The rhetoric surrounding the Games, however, strangely misses any reference to health and wellbeing, or to the challenges particular to Commonwealth countries in the shape of HIV. With 2.328 billion citizens, or 30% of the total world population, the Commonwealth represents a startlingly disproportionate 60% of the total number of people living with HIV globally. The 18 African nations of the Commonwealth have a total of 21.5 million men, women and children living with HIV, followed by just over 3 million in Asia’s 8 Commonwealth countries with the vast populations of India, Pakistan and Bangladesh. With prevalence rates as high as Swaziland’s 26.5% and Botswana’s 23%, and as low as Bangladesh’s 0.1%, it is clear that the epidemiology of HIV in the Commonwealth is affected by many different factors. In the same also, responses differ, from Australia’s integrated human rights based approach, to the promotion of HIV testing in Zambia or the example of treatment activism in South Africa, the Commonwealth holds a body of very effective knowledge and skills. One feature of 42 of the Commonwealth’s 53 member nations, however, is the criminalization of same sex relationships. Across the Commonwealth therefore, claims the Equality Network, LGBTI people are denied equal access to health services, employment, education, housing and human rights. More recent anti-gay legislation and police activity in countries like Uganda and Nigeria have compounded the terror faced by many who, if the stay, risk their own life, or if they flee, are confronted by even greater threat in refugee camps in the form of beatings, murder and expulsion. Alongside criminalisation of homosexuality, criminalisation of certain HIV-related actions, and use of HIV-specific or general laws in countries across the world increases vulnerability of individuals and groups and endangers the success of prevention. Many of these laws are a hang-over from British colonial rule. Far from introducing homosexuality, British colonialists and legislatures brought their own prejudice and legal forms, particularly into African and Asian countries hitherto at ease with a diverse sexuality. Attempts have been made through the Commonwealth Heads of Government Meetings to address these problems, but sadly, for many the very mention of homosexuality switches off any engagement from that country. The Secretary General and heads of government need to revisit the Harare Declaration and build an up-to-date statement of values and of principles by which the Commonwealth operates. There is a shift in thinking away from conditional aid on the part of the UK Department for International Development. Withdrawing aid from Uganda, for example, is unlikely to change attitudes. A different approach which seeks to address and repeal discriminatory colonial legislation was proposed in a recent human rights conference in Glasgow. In tandem, a multi-dimensional approach with a focus not only on sexuality but also on race and religion was adopted. If it helps you to see beyond the gold medal highlights to the lives of the sportsmen and women in their home countries and to how the inconsistencies and unfairness in our Commonwealth can be ended, then the Games will have made a difference.

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Human Rights and HIV

Human rights are fundamental to living well with HIV. There is considerable scope for us to drive the human rights agenda in HIV prevention, treatment and care strategies. Not only as a flag around which we might rally, but more importantly as a tool and lever to be used by and for individuals and groups, as a catalyst to obtain effective clinical and public health services. HIV in the experience of those living with and affected by it, has followed so closely the track of inequality, poverty and discrimination that it is tempting to view it through the prism of rights related to specific groups. There is ample evidence that denial of human rights and failures of governments and other establishments to exercise responsibility to women, gay men, people who use drugs, and sex workers, fuel the spread of HIV and deepen the poor outcomes associated with late diagnosis, poor adherence, and inequitable access to services. This has a general application, but if we bring this closer to home here in Scotland, and consider health rights and HIV standards already set out and published, we see how a rights agenda could get right behind a positive change for HIV and for people living with the virus. Although social and welfare needs are relevant, those bodies dedicated to these topic areas are better placed than HIV organisations to pursue a policy and campaign portfolio. The most immediate and directly relevant area that concerns anyone living with HIV is the health and well-being agenda in the shape of clinical and public health services, and it is here that our energy and resources must be focused. The “Charter of Patient Rights and Responsibilities”, based as it is in the Patient Rights (Sc) Act 2011, sets out what we can expect as NHS patients, including anyone living with HIV. It is a sound starting point from which to explore rights and responsibilities in relation to HIV. The headings cover access, communication and participation, confidentiality, safety, and feedback/complaints. Any overview of the needs of people with HIV will see at a glance how vital these are. Equitable access regardless of where in Scotland we live or any other consideration defines what might be expected of HIV prevention, testing, treatment and care. Too often officialdom or finance departments mutter that it’s OK for example for the big health boards, or for areas where numbers are more manageable, but ‘it’s different here’. No it is not. Equitable access is not only a right, it is set out in commitments such as Scotland’s HIV Standards that if you need, for example, specialist clinical psychology support, you should get it. Why is it that, unless human rights and responsibilities are set out explicitly in our national HIV strategies and standards, the natural tendency of systems and establishments will resist rights while heavily promoting individual responsibilities? It has a lot to do with where we have invested powers and influence in the planning and delivery of HIV services. That is why the second heading under the NHS Charter, ‘Communications and Participation’ is as important as the first. Were people with HIV able to participate with properly communicated information, then access to specific services would not be so patchy, and late or very late diagnosis would not be at the scandalous levels they are, around 53% and 31% respectively. It is lack of responsibility on the part of generic clinical services to inform themselves that we see too many individuals who present with indicator conditions falling through the net only because they (often women) do not fit the stereotype, or, to put it another way, are not within the target group of gay men on which so much attention is focussed. So also we might work our way through the crucial topics of confidentiality, respect and safety which are, for us, touchstones of good care which determine how effective are our care provision and ability to live independently and well. Our record in integrating human rights to our HIV strategies is weak. Ponder the fact that, despite nods to a human rights approach in ‘Respect and Responsibility’ Scotland’s sexual health strategy and the ‘HIV Action Plan’, explicit references are altogether lacking, as also in the Framework for sexual health and blood-borne viruses. Other links must therefore be utilised in upholding and promulgating human rights in a health context. The context of human rights in health is well articulated in “Getting it Right?” as it describes a relatively well developed political, legal, social, economic, environmental and technological background. The resulting ‘Scottish National Action Plan” (SNAP) seeks to embed human rights into the integration of human rights to health and social care. This presents an opportunity for HIV strategies and frameworks to be more closely and clearly aligned with human rights. Public Health England missed an opportunity to galvanise its vision of having nothing less than ‘the best HIV prevention response in the world’ with a strong human rights and equality structure. Instead it puts its faith in an injection of £20 million at a time when other health conditions recognise that plans must be delivered ‘within the financial realism that European society experiences’ (European Cancer Patient Bill of Rights, 2014). Investment in health is of course a driver of better health and one wishes the project success in seeking such resources. Australia’s consistency in developing its HIV strategies within the human rights context is a model to us. In Section 6.4 of its strategy, it states, “Australia’s approach to HIV/AIDS has demonstrated the protection of human rights to be both compatible with and essential to the effective protection of public health” http://www.health.gov.au/internet/main/publishing.nsf/Content/ohp-national-strategies-2010-hiv/$File/hiv.pdf It follows effortlessly therefore for harm reduction, sex work decriminalisation, and equality to be woven into the actions and for success to follow. Opportunities to build a human rights agenda need not await development of high-level strategies, important as they are. They present themselves day-to-day, because human rights affect our daily lives living with HIV. People living with HIV need a Charter of Rights.

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sauna policy

"High lever support for the City of Edinburgh's tolerance policy towards saunas.

As professionals and individuals with expertise and experience of HIV prevention, treatment and care, we note the recent discussions regarding the City of Edinburgh's 'toleration' policy on the licensing of saunas in the city. This policy emerged from a pragmatic consensus on public health and safety, born out of hard lessons learned from early mistakes, but also on courageous and ground-breaking innovation. Harm reduction policies applied in various areas of Council, health and enforcement responsibilities have been successful and have been admired world-wide. It protects the most vulnerable, provides clear and confident lines between community and public authority, and forms the foundation of excellent tailored social and health care services.

We urge the Council not to compromise this dearly bought reputation, and to work with all sections of the community to address concerns whilst maintaining the health, safety and well-being of Edinburgh's residents and many visitors."

Roy Kilpatrick

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HIV Home Testing - no consensus

Little did I think that when I posted my three-part blog on HIV Home Testing exactly one month ago on 12th July, that the debate would blow up across social media.

The debate was stirred by news reports that the UK Government plans to legalise home testing kits, and by its celebration by the terrence Higgins Trust as a successful conclusion to several years of campaigning.

Several writers have responded, not all in favour, including the 'Incidence0' blog, "HIV Home Testing: not a free cuddly toy", on which I made the following comment.

In addition to the rationale that legalising HIV home testing kits will prevent abuse and allow control, other arguments are fed in along the way. The HIV home testing campaign has based its recommendations on a claim that clinics are overcrowded, too busy, and lacking in privacy, some even claiming concerns about confidentiality. If so, then these problems need to be solved at source rather than through home testing which brings with it equally uncomfortable and substandard risk factors. 

A key gap in the entire argument is an analysis of who it is that's testing late. Focus on MSM and Africans ignores a serious problem of late diagnosis in non-African heterosexual individuals. It also fails to recognise, as suggested in this 'Incidence0' article, that significant improvements in rates of HIV testing have come about through various strategies, opt-out in antenatal, outreach community testing, normalising HIV tests in sexual health clinics, and an increase in GP testing. The case for home testing is that anything that will increase testing is good. As Prof Helen Ward pointed out in a tweet yesterday, more testing does not mean more diagnosis or linkage to care, and what we need is better engagement with and by existing services.

The demography of those with undiagnosed infections is highly diverse. Recommendations for proven strategies to improve HIV testing are not being driven forward, and though health policy and systems in Scotland as against the rest of the UK are diverging as a result of devolution, the picture is fairly common across the UK. The problem is not lack of policy or knowledge of what we ought to do, it is a lack of action and implementation.

It is relatively easy to pick holes in the HIV home testing proposals and these have already been well rehearsed. Questions need to be asked and answers are needed as to why we have reached this stage with no proper consultation or transparency as to processes. There is a question also as to potential conflicts of interest on the part of campaigners and lobbyists.

These are important issues. At least equally important in our discussions, however, is to take a positive line on HIV testing. How often have we heard of efforts to make the testing experience better for the patient? I use 'patient' advisedly as criticism is not all one way. Many campaigners are critical of  healthcare and clinical standards, staff and facilities. It is worth noting that they and their work are seldom subject to anything like the scrutiny to which NHS partners are accustomed. 

The greatest weaknesses in the argument for HIV home testing is firstly in the supporting material issued by the Orasure company itself, the only approved home test kit welcomed by campaigning groups like NAT and THT. One in twelve false positives, and a three month window period fall well below acceptable standards.

The second weakness is that abuse of the current system is likely to be replaced by abuse of a new legalised approach. The MHRA's role is interesting in this regard as their remit is to approve the technology, whereas the provider is regulated by CQC. There is no clarity as to how legalised kits will be regulated, how risks will be assessed and dealt with, how customers (for such they will be) are to be protected, or how commercial company interests will be brought into line with national strategic priorities while they pursue commercial interests and target marketing in supermarkets, on youtube, and on dating sites, as currently in USA where the kits are already on sale. 

Conflict of interest on the part of commercial companies who have lobbied for legalisation needs to be open and transparent. By the same token so also ought the interests of charities and campaigning groups whose role includes provision of services and possible contractual and financial benefit by way of sponsorship or contracts from sales of kits and the work that will be involved in follow-up.

The weakness which I find astonishing is that we are all busy debating home testing when in fact we ought to be debating home sampling. There is no need for home testing kits to be legalised. Those who framed the original regulation knew exactly what they were doing. They carefully hedged what was permissable and what was not so as not to restrict the very approach which campaigners advocate - an option which allows the individual to take a test in their own time and in their own space, but with a link to care. 

The important safety and health imperative, however, is built in through protocols and access to clinical expertise and supervision. Only in that way will choice be made consistent with the goal of HIV testing. Not as an end in itself but a route into care and prevention services, with the patient at the centre.

Post-Script. While searching for an image I noted that of the the Oraquick ads that featured an individual using the kits, all were women, only one white, the others black, and all fit and attractive with sparkling ceramic white teeth. Well, you don't want yellow teeth when you take your HIV home test, do you?

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The HIV and HepC mix

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)

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Finding your way on the HIV journey

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:

 Better co-ordination of your care

Agencies and disciplines working well together

Quality of care as the priority

Knowing about each worker’s roles and responsibility

 Direct audit of clinical practice

Professionals know who to communicate with about your care

Full participation in your health care in partnership with all healthcare workers 

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:

Integrated Care Pathways: A Guide to Good Practice - Nicola Davis ...

www.wales.nhs.uk/sitesplus/829/opendoc/116450/

The Sexual Health and Blood Borne Virus Framework 2011-2015

www.scotland.gov.uk/Publications/2011/08/24085708/6

NHS Healthcare Improvement Scotland 

SWAGNET 

Map of Medicine 

This blog first appeared as an article in Baseline Magazine, July 2013. 

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HIV Testing: Home Sweet Home?

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.

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HIV Testing: Quality not Quantity

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?

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HIV testing: When nobody's looking

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. 

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Drugs: how cool are we really?

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.   

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HIV Testing: how can we build on success?

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.

Strategic

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.

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What does 'HIV cure' mean?

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.

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Defusing Scotland's HIV prison timebomb

HMP Glenochil. Photo: Steve Cox

Exactly twenty years ago, in the first three months of 1993, more than thirty men in care of Her Majesty’s Prison Glenochil were on heroin, sharing needles and syringes. During a prison-wide HIV testing campaign, it came to light that 12 of the men had become HIV positive as a result.

Today, twenty years on, HIV treatment has radically improved the health and longevity of people living with the virus. For anyone receiving an HIV diagnosis in the early 1990s, however, prognosis was poor and society less than accepting, especially of men infected through sharing needles in prison. When an official report of the outbreak warned of the risk of spread from the ‘Glenochil twelve’ they were unaware just how prophetic their words were of what was in fact a human tragedy.

In one case at least, the infection of a partner would trigger the first trial in the UK of someone with HIV for ‘reckless and culpable behaviour’. The High Court found the accused, Stephen Kelly, guilty and returned him to the custody of the prison service in whose care he had contracted the virus in the first place. Implications for him, his partner and family were disastrous, and created a knock-on effect among people with HIV. A string of other stories was related in a tabloid newspaper a few years later, naming individuals and their closest connections, while also feeling entitled to breach intimate details of the men and their families.

The first report globally of an HIV outbreak in one of Scotland’s prison created a stir. Even with the well-known high rates of injecting among the young men and women of the housing estates on the edges of Scotland’s biggest cities, it was headline news when it broke.  Drug education measures for drug users in prison had been insufficient to protect the ‘Glenochil twelve’.  A subsequent enquiry by the Scottish Affairs Committee of the House of Commons (London, HMSO 1994) concluded that anything between 22 and 43 inmates might have been infected, while another 258 were missed from the study having been released or moved to another prison with the six-month study period.

Outside prison, in contrast, a raft of measures including needle exchanges had started to turn around an epidemic of HIV infection that had peaked in 1986, six years previously. Day to day, the majority of drug users in communities would have made use of these harm reduction measures. Once behind prison gates, however, inmates addicted to heroin found a different set of rules.

In a rapid response, prison authorities introduced counselling on admission, detox and rehab, and eventually sterilising tablets to clean syringes and needles. Syringes and needles themselves, however, were excluded. They still are.

The official report at the time recommended ‘urgent measures’ to prevent further spread among prison injectors.  (Taylor and Goldberg, BMJ, 1996). Experience in the community was clear. Harm minimisation through provision of needle exchanges, oral substitution treatment with methadone, support on release, and good links with community and health agencies would mirror strategies in the community from which prisoners came and where they were accustomed already to protective measures. For those twelve men infected in Glenochil, in 1993, time in prison had taken them right back to experience the self same conditions that had fed the epidemic a decade before.

World AIDS Day, Glasgow, 1991

Now, 20 years on, what has changed? Pressures have increased with soaring occupancy rates. The majority (64%) of people entering prison have used drugs in the previous twelve months, and many (39%) worry that drug use will be problematic on their release.  Positive advances have been made in prison drug policy. Provision of clean needles and syringes, however, remains taboo to Scottish prisons.

Proposals to pilot a needle exchange in 2009 were met with threats of a walk-out by the Scottish Prisons Officers’ Association. Despite having been Scottish Government policy stated in its Hepatitis C Action Plan (2006), the pilotremains in the red zone.In response to SPOA concerns for its members, the SPS undertook a thorough study and concluded, “It is important that, where possible, inmates of prisons have access to the same services in prison that they would have if they were living in the community”. 

It was also found that needle exchange schemes in 46 prisons in four other European nations had successfully reduced rates of HIV and Hep C. Despite similar safety fears expressed by Scotland’s prison officers, no single instance of use of needles as weapons had been recorded. Where these schemes have been stopped, it has been due not to opposition from staff, but to political interference. Indeed, whereas 85% of staff in the European study had opposed introduction of the schemes, 100% wanted them kept when politicians closed them, a remarkable change based on direct staff experience.

As long ago as 2001, a review of the HIV strategy in Scotland received evidence from the then SPS Medical Adviser on HIV prevention and concluded, “We recommend that the Scottish Prison Service considers whether it can do more to reduce the potential for HIV transmission in prison”. SPS Standards currently support an enlightened approach to drug use in prison. Harm reduction is integral, taking the form of substitute prescribing, harm reduction packs, condoms, lubricant and dental dams. In some prisons, there is even a needle replacement scheme at reception and the offer of sterile injecting equipment on release.

  Hepatitis C Health Promotion, Scotland, 2011

The one gap is in provision of clean needles and syringes during custody itself, and it seems that the whole project is off the agenda.

It might be argued that not only are needle exchange schemes unacceptable to prison officers, they are no longer necessary due to the success of other existing educational and harm reduction measures in prisons. 

This latter point was scrutinised by the same researcher and her team as reported on the original Glenochil outbreak. This time, the primary focus was on Hepatitis C not HIV. This study, published in the latter part of 2012 found that the rate of illicit injecting drug use and of HCV in injectors in Scotland’s 14 prisons is the lowest in the literature. This is due in great part to drug treatment in Scottish prisons, including harm reduction.

It found, however, a 3% incidence of Hep C in the prisons during the period of their study, meaning that Hep C transmission occurs within prison. The researchers conclude that although the risk and rate of exposures to Hep C, including injecting, during current imprisonment was low, risk accumulates the longer someone is in prison.

Scotland has an internationally recognised reputation for the success of its pragmatic drug policy in tackling HIV. This has not stalled in our prisons, with excellent treatment and support from local specialists and voluntary agencies. Local NHS Boards now provide prison medical services. NHS Forth Valley, where Glenochil is situated, hosts the largest number of prison establishments of any NHS Board area, and is an example of positive change in the relationship between prisoners’ health and prison. 

There is a renewed opportunity to revisit a pilot of prison-based needle exchange schemes in a less threatening context.

Based on all of the evidence, policy, and the real risk of exposure and infection, Scottish prisons must introduce needle exchange schemes to complete its strong harm reduction approach. It is long overdue, two decades after the notorious Glenochil outbreak.

This article appeared in ‘The Herald’, 08/03/2013

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A road-test for HIV prevention science

The Conference on Retroviruses & Opportunistic Infections (CROI) focusses mainly on biological sciences. What can we learn about prevention?

Nothing is more likely to whip the media into a frenzy over HIV than the word 'cure'. Over these past few days, reports from a conference in Atlanta of the ‘cure’ of a baby from HIV fuelled numerous media headlines. Since the initial reports, it has become obvious why the ‘cure’ was qualified by the ambiguous ‘functional’, and why inverted commas punctuated the science. Conference attendees now suggest that whilst worthy of further investigation, report of a ‘cure’ is premature.

Less prominent in the media were discussions on the prevention of HIV. On the basis that ‘prevention is better than cure’ I have followed this conference theme from my laptop in the comfort of my Edinburgh living room. For one thing, I prefer to leave complex virology and pharmacology to the scientists. For another, Atlanta is about as grey and cold as ‘Auld Reekie’.

Mixed results

Last summer’s grand and political International AIDS Conference in Washington heralded ‘An End to AIDS’, supplying journalists with a catch-phrase. An exploration of the theme of prevention at the Atlanta conference yields unexciting headlines. It does, however, provide helpful insights.

In the context of what is one of the best conferences focused mainly on HIV science, it is possible to compare biomedical responses with behavioural interventions to prevent HIV transmission. Biological sciences often claim a significant breakthrough, as in the introduction of ground-breaking anti-retroviral therapies. In the behavioural science of prevention you’re up for the long haul of education, engagement, and understanding HIV and protection from a community and individual perspective.

A reality check on ‘End to AIDS’ rhetoric provided useful background to the conference’s assessment of interventions such as Pre-Exposure Prophylaxis, treatment as prevention, and the conditions essential to their success in the long term. By way of comparison, detailed analyses of what drives the HIV epidemic especially among gay men, and community studies suggest a direction for HIV prevention.

A road-test for science

One of the most telling comments was an aside from Thomas Coates of the University of California when he referred to Los Angeles where his research team is based as “like a third world country ….. I kid you not”. In response to a question about how to spend the next few billion dollars, the same speaker quipped, “I think our Congress has decided that the money is not going to be available”. Asides maybe, but another aspect of the reality within which scientific research and prevention are subject to a ‘road-test’.

CROI 2013: the 20th Retrovirus Conference

“Community-led reductions”, a study presented by Thomas Coates, was a deep disappointment. Reporting on three study sites, the packages tried were little more than the standard community approaches we operate in Scotland. It is true that the interventions applied over three years from 2006-2009 and assessed between 2010 and 2011, yielded a 25% increase in HIV testing and a fourfold increase in detection of previously undiagnosed HIV, as well as reductions in risk especially among those diagnosed positive. These successes are not significant in comparison to experience of the effect of policy and practice changes over a similar period in Scotland.

What Coates called a ‘modest reduction of 14% in incidence’ based on new statistical calculations, however, is worth more investigation. Perhaps one interesting aspect of the intervention was use of mobile outreach and testing buses, similar to that used by the ROAM team in Edinburgh and by the Hepatitis Trust across the UK. His conclusion that his team must ‘achieve the penetration of the community’ should not be misinterpreted.

A drug-based study into use of Tenofovir in a vaginal microbicide and in Pre-Exposure Prophylaxis (PrEP) reported that those receiving the intervention did no better than those on the placebo. Thus, one of the largest trials of HIV drug-based prevention had to be discontinued before it had completed its course. The VOICE study recorded an almost statistically significant greater likelihood of the women on the study becoming HIV positive.

The main reason for trial futility was not drug-related, but on account of low adherence to the regimen. This mirrors results of the Fem-PrEP study and a similar study with young gay men.

Truvada for prevention: a finding of 'not proven' 

Adherence to any intervention, be it condom use or drug-based, is crucial. As mentioned in an earlier report of CROI, intermittent use makes sense for when you’re planning sex, but is ineffective if the power of the intervention depends upon there being sufficient level of drug in the blood-stream to prevent establishment of the infection. Whilst results of broad community-wide, drug-based interventions are disappointing, there might be scope for their use along with intensive support with individuals at greatest risk.

Condom use was the subject of another detailed longitudinal study, which sought to estimate the efficacy of condom use for HIV prevention among men who have sex with men. Dawn Smith reported a 70% efficacy in condom use, similar to that reported in 1989 by Weller and Ahmed. Of additional interest were the levels of adherence to condom use over time. Long-term, only a minority 16% reported ‘always’ using condoms. Intermittent, ‘sometimes’ condom use, was reported to have no significant effect in preventing HIV. The longer the time-frame studied, the lower the consistency of condom use. This finding attracted a fair bit of interest in conference reports. One must question why.

First of all, the study took no account of the context of condom use, for example, the type of relationship, concurrency, numbers of sexual partners, settings or networks. Secondly, the range used for ‘sometimes’ using condoms went from 1% to 99% with no stratification. It is obvious that the longer one risks ‘sometimes’ not using a condom, say in a fairly representative 50% of per act use, the more likely that infection will occur. It will rise further if 50% ‘sometimes’ shows a further 25% reduction. However, it remains true that ‘always’ is better than ‘sometimes’, and ‘sometimes’ is better than ‘never’ using condoms.

Atlanta - venue for the CROI 2013 Conference

How we report statistics to our communities and their underlying message requires care. Reports of a baby ‘cure’ have resulted in phone lines busy with anxious parents asking when the elusive ‘cure’ will be made available. If we report statistics, and we ought to, we have a responsibility to add sound analysis and relevance to the readership’s real life experience. Meantime, condom use is 70% effective in preventing HIV.

Greater promise in the field of prevention was woven into other studies on which I will comment separately. Meantime, the big message of these studies is that if biomedical science is to be the harbinger of a prevention break-through, it will take time, it has to be in the real world, and it will succeed only in combination with behavioural science and alongside structural and political change. I will also consider these factors and what we might learn.

[scotfreehiv]

HIV Prevention Research: What's Next?

Report of the 20th Conference on Retroviruses and Opportunistic Infections (CROI) of a presentation by Susan Buchbinder  

Reports of the HIV ‘cure’ of a baby in the USA have attracted global attention. My guess is that although this provides further support for the concept of cure, and will add momentum to research, it will make no immediate difference to mothers and their babies. Once more information emerges from the conference, I might return to this topic.

Reading other conference presentations, there is information on prevention that is of immediate strategic relevance.

In her presentation on “HIV Prevention Research: What’s Next?” Susan Buchbinder highlights evidence that provides a useful guide for action.

Networks - again

In HIV, size matters. HIV prevention work must address the influence of sexual networks and the numbers of sexual partners on HIV transmission. The point here is that even a small increase in the mean number of partners a person has in a community leads to a massive degree of interconnectedness of networks. The flip side is that if we can reduce that number of sexual partners, the potential for rapid spread is also massively lowered.

The data presented by Buchbinder is taken from Carnegie (2012) which modeled a population of 10,000 in which 44% had one sexual partner in the year, and 56% had two or three partners. In this case, there was only a 2% interconnectedness through networks.

Immediately that percentage with two or three partners increases, so much the greater is the interconnectedness. Relatively small increases of 4% having two or three partners bump the interconnectedness to 10%. If 64% have two or three partners, it rises to 41%. At a 68% of individuals with two or three partners, interconnectedness rises to a massive 64%.

According to McDaid’s (2012) most recent bar-based study, 11.9% of gay men interviewed had more than six sexual partners in the previous 12 months. Of those who had never tested, 24.1% reported a high-risk event of unprotected anal intercourse in the previous 12 months.

  Disparate efficacy

It has been reported previously and I have commented on the steadying of rates of increase in new infections globally. After the peak in the mid 1990s, there has been a decrease of 25% in new cases, attributable to a variety of factors including the effect of treatment on infectivity. It might be too early to identify such a trend in the UK, but from what we understand, a plateau overall in rates of diagnosis of HIV conceals a worrying disparity between populations most affected. Whilst new heterosexual infections have reduced, in contrast among men who have sex with men they have increased. The same is true in the USA, Sub-Saharan Africa, and Latin America.

In the USA, more detailed analysis reveals the impact not only upon MSM but also upon black MSM, particularly in the South which represents nine of the ten areas with highest fatality rates, mirroring high rates on HIV incidence. Globally, HIV rates in MSM are 50 times higher than in the population generally. Geography, race and sexuality matter in this context. 

Focus of prevention as well as of public interest upon sero-discordant couples reveals an assumption that this is the major source of new infections. In fact, within Sub-Saharan Africa, the majority of men infected acquire their HIV outwith their primary relationship. Women on the other hand are more likely to become infected within their relationship. Risk strategies and messages need to be different. Reaching and influencing men is key to prevention.

The high rates of HIV in MSM and the disparate risks between men and women in heterosexual relationships cannot but be linked. Legal and safety barriers for men who have sex with men are all the greater with the current anti-gay politics and laws being debated and passed in many African nations. This serves to increase infectiousness because African men are less likely to test or to go on treatment. At the same time secrecy and fear drive men’s sexuality underground and out of reach of prevention.

Real life science

The research priority currently is in treatment as prevention. Not only do we know that in specific circumstances an undetectable viral load reduces infectivity, but that statistically the same treatment is as effective as condom use in HIV negative individuals.

The best research results are reported in highly controlled trials. Less promising are the Fem-Prep trials and a trial recently with MSM in Chicago. The differences are not in the drug formulations or the kinetics and dynamics of the drugs, but in adherence to the demands of a strict regimen. Without good adherence, poor concentration of drug reduces its effect on viral load and therefore on infectivity.

The rate of adherence in the Chicago MSM study was found to be only 20%. The most likely explanation is that instead of taking the drug Truvada regularly every day, men were using it occasionally and only when they anticipated having sex. This is difficult to establish without some way of reliably linking time of medication to the time when the men had sex.

Efforts to improve adherence are looking at interventions such as texting, not to remind individuals when to take the medication, but to establish what kind of support might be needed at different times. A comparison with texting to remind people when to apply sunscreen ie when the sun was out, found a better response for the sunscreen than for anti-retrovirals. In other words, getting your shirt off and slapping on factor 25 is less stigmatising than swallowing down Truvada before unprotected sex with a positive partner!

Better cover

The standard and effect of research from the USA is outstanding, related primarily to the power of the dollar and the prestige of its academia. Sequestration of their budgets is likely to knock this primacy, but even more worryingly, it will hit hardest those who are without a good insurance policy in one of the few Western or indeed medium resourced nations with no universal health cover. 

For prevention to be effective, it needs to use various drivers. We see clearly that the effectiveness of biomedical interventions such as treatment as prevention and more detailed action such as PEP and PrEP depend on a host of other factors. 

If for example, 80% of those diagnosed with HIV are on ARVs and diagnosed at or around a CD4 count of 350, then modeling suggests a major impact on transmission. Treatment of all people with HIV was credited with the promise of the future elimination of HIV at last summer’s Washington 2012 international conference. In the cooler and more reflective Atlanta of March 2013, optimism might be as lively, but hope faded in light of the reality on Capitol Hill. In Scotland, the 80% point is exceeded by our HIV clinics, yet we see rates of HIV continue to rise. Fall in condom use has already been suggested as a major factor. In addition, however, the fact that 50% of new infections are diagnosed below the 350 CD4 count level, and half of them below 200, adds to a tragic Sisyphean effort of never quite getting the boulder to the top of the hill.

Summary

Mainly structural and socially determined factors negatively affect our prevention efforts. Buchbinder summarised in the following five points:

Understanding and addressing disparities

Understanding drivers, design and test interventions for largest impact

Identifying new PrEP agents, delivery and scalable, durable adherence interventions

Integrate clinical trials, ecological studies and mathematical modeling

Scale up, measure impact, correct course

[scotfreehiv]

Practical participation

Transforming positive participation into practical action

Most health and HIV workers ask ‘how to do’ patient participation. The rationale and principles suggested in my earlier articles point to the practicalities of participation.

Practice has potential to improve our experience of health. Participation in health through active engagement at an individual level or in service planning and delivery helps to achieve that improvement. 

No single model

Within a health service struggling to meet competing demands, patient participation is seldom easy. The physical environment and contexts of HIV services affect how patients feel about their care. These become more accentuated the fewer the patients.

As a result, practical arrangements and scope for patient engagement are bound to vary. It would be a mistake however to excuse local inertia on the basis that ‘it’s different here’. Principles apply even if their practical expression may differ. Here are suggestions for how participation might look in practice.

Strategic

Rather than a series of disconnected patient involvement initiatives, participation should be part and parcel of the work plan of the clinic, the Managed Care Network or of the community agency. A ‘patient first’ culture is essential. Leadership driven by what patients need and how best to meet those needs, helps to avoid a tick box mentality.

Dynamic

People don’t respond well to sitting through a boring business-style agenda. Predetermination of discussion topics diminishes participation, because it stifles questions set by organisers. It’s important to be flexible and go with the flow. To generate energy and bring out the best ideas, engagement exercises are best if sociable and fun. If participation methods include meetings, then professional and independent facilitation is invaluable.

Social research and clinical trials are part of a dynamic and varied approach. They are among the most important ways in which people with HIV contribute to the planning and evidence for services. Effective participation will always include sound research.

Inclusive

Our familiarity with the language of inclusion assumes that by talking about it, we’ve done it. The right mix in participation of people with HIV might not necessarily match the epidemiological percentages, and we need to go outside out usual circles if we are to hear voices for the first time. Untidy real life concerns fit awkwardly in neatly packaged conference folders.

Whilst we must listen to the views of people who attend voluntary agencies, there are many more people with HIV never in contact with agencies. People newly diagnosed for example are seldom heard. As a result, older stories and outdated themes are recycled. By excluding people who don’t feel ready to disclose their HIV status, we discourage them and limit the wealth of experience available to us. To include a wider range of people, get out of meetings and offices to meet people and capture what’s important on the day.

Last but not least, carers are excluded consistently, and they feel it. A partner, a parent or indeed an adult child can give insights into what works for the positive person.

Appropriate

It is possible to follow other models of patient engagement. A web search will bring up lists of policies, tools, and ideas. Other long-term conditions such as diabetes base their patient engagement approach in self-management techniques along with education and information. Where they already exist, they provide a springboard for engagement.

Existing mechanisms for patient and carer participation are excellent mechanisms for representation of the voices of people with HIV. Furthermore, the experience of living with HIV and its complexities and co-morbidities would benefit bodies such as PFPI and NHS HIS.  

Two models of patient participation that seem to work well in London are the Bloomsbury Patient Network and Chelsea and Westminster’s Frontline HIV Forum How elements of both might work in Scotland would be worth exploring. Given the differences between London and Scotland, however, their transferability would be difficult. Chelsea and Westminster is the largest HIV unit in Europe. The 4,100 patients in Bloomsbury are close to the entire number of 4,300 in Scotland with patients cared for in eleven different specialist units across the country. The Bloomsbury system designed for such a large patient number, with seventy health care staff and three part-time patient representatives for one clinic alone would not transfer easily.

One important consideration in development of formal participation arrangements in Scotland must be the needs of the significant number of over 1300 patients who live and are cared for outwith our two largest cities. Indeed, the clue to a successful approach might be to start with the needs of these patients and work towards the larger centres.

Networks

The perception of networks in a health and HIV context is well known. I would like to propose a very different understanding of networks for patient participation. Networks are the communication lines by which people at risk of HIV make contact and by which HIV is transmitted. Outside of the clinics and agencies, people support each other all the time through these informal networks. Informal networks can transform to take on a more organisational structure, as happened in fact with both Bloomsbury and Frontline. Even in their presence, however, informal networks continue.

Why not find a way of tapping into such informal networks? They may be found on Twitter, social networking sites like Facebook, and cruising sites like Gaydar. In the past week on Twitter, I saw one such network supporting someone through his decision to go on treatment, sharing their individual experiences and tip about how to handle the new routine, and reassuring him about his Efavirenz dreams and sleep patterns.

Groups of HIV positive people campaign through social network sites on welfare reform, NHS changes, and mental health. Debate on risk and behaviour, or testing and treatment is not the province of agencies but of positive people themselves. There is greater candour (and more humour!) in such networks than in the structures we set up.

Leadership

There are natural champions for and among people living with HIV. Initiative in drawing upon their expertise and knowledge is the responsibility of NHS bodies and voluntary agencies. ‘What we see’ and the experience of people with HIV can be told in web-based life stories. Ian Kramer’s interviews on Patient Voices are an excellent example.

Agencies can show leadership by building support for patient participation into job descriptions as an activity but also as an aptitude. Employment interviews should probe candidates on their experience and understanding of patient participation.

Participation in practice should be integral to service plans and specifications for NHS and voluntary sector bodies. Once an agency is required to account for and report, there is an incentive to deliver on patient participation. It is well known that attitudes and good intentions are insufficient to change behaviour. Support, scrutiny and seeing results might.