Tackling the spread of HIV in the UK

Tackling the spread of HIV in the UK Investment in HIV prevention makes good economic sense. Every HIV infection prevented saves the State some 280,000 and saves a human life from being blighted. The UK has played an important part in the fight against HIV over the last three decades, at home and abroad. Since Terrence Higgins Trust first produced an HIV prevention leaflet in 1983, the UK has gained a strong track record and reputation in HIV prevention. It has led in supporting screening for pregnant women and harm reduction services for injecting drug users. It is internationally recognised for its early safer sex campaigns, in particular those for gay men. Because of this we have reduced mother to child transmission to almost zero, we have some of the lowest levels of HIV in Western Europe among drug users, higher levels of HIV testing among gay men than in some other European countries, and sustained levels of condom use among most gay men. Strong leadership from successive Governments has maintained the UK s community-based national prevention programmes for those at greatest risk despite local disinvestment in HIV prevention. We have comparatively good levels of HIV treatment which have helped to minimise HIV transmission. We have a world leading HIV public health surveillance system giving better information about patterns of HIV need than most other countries. And yet Even though gay men s sexual risk behaviours have been stable for the last seven years, ever increasing numbers of people living with HIV, alongside limited reductions in undiagnosed HIV continue to drive the UK HIV epidemic for both gay and straight communities. Recent HIV increases in gay men, high levels of undiagnosed HIV among UK Africans and the further threat to HIV prevention as public expenditure shrinks all highlight a real risk that progress may be lost. Each year the NHS acquires life time HIV treatment costs of 1 billion, some of which could be avoided by reductions in HIV transmission. We need to combine past successes with new breakthroughs to re-energise our approach to tackling HIV in the UK. Currently, we are missing too many opportunities for prevention interventions. We need behaviour change, not just among those at risk of HIV but also from those working to reduce its spread, to adapt to face new challenges and changing circumstances. There are many reasons why our HIV epidemic continues to rise. But principal among them are these: A quarter of people with HIV in the UK are undiagnosed, and therefore far more likely to pass the virus on than someone who knows they have HIV Only half of those with diagnosed HIV are on stable treatment regimes. Though it is not a cure, successful treatment can dramatically reduce a person s infectivity by surpressing the virus. Some people persistently behave in ways that puts them at increased risk of HIV. Prevention efforts do not always take place against a backdrop of HIV awareness. People in communities where those messages are no longer getting through are taking more risks than those who continue to be consistently informed about HIV and how to avoid it. This report shows how by tackling these four root causes, we can turn around the UK s HIV epidemic. In so doing, we will also save tomorrow s taxpayer millions of pounds and thousands of people from ill health. It is well within our grasp.

HIV prevention challenges and opportunities HIV prevention currently faces both challenges and opportunities, which we need to grapple with. Changes in public health policy & philosophy. Across the UK, greater priority is being given to public health policy. In England in particular, with the majority of UK HIV infections, there is greater focus on individual responsibility for health. Alongside this runs the use of behavioural science to nudge people into healthy choices and behaviours. Together, these shift the balance of responsibility for health behaviour from the State towards the individual and encourage an increasing sophistication in understanding and influencing HIV risk behaviour. HIV treatment as prevention. Although behaviour change is at the heart of every HIV prevention technique, technology has always played its part, from condoms and testing to needle exchanges. It s clear that properly treating people with HIV dramatically reduces their likelihood of passing on the virus. We also know that taking intensive treatment just after accidental exposure to HIV cuts down transmission. Recently, evidence has shown that taking some HIV drug treatments in advance of risky behaviour can also help protect HIV negative people from infection. These breakthroughs increase the ways in which we can tackle HIV transmission, and give us the ability to potentially extend the use of combination prevention - behavioural and clinical interventions in combination with each other. Changes in Society. Sexual risk behaviours are hard to alter and recent social changes make this goal even more challenging. The growth of the internet for dating and arranging sex, the growing sexualisation of society, increasing levels of sexual activity and partner change amongst young people, the use of performance enhancing sex drugs amongst older people and rising alcohol and drug use in general have all increased opportunities for HIV transmission. Together these suggest we need to make significant changes in the level, type and setting of the HIV prevention work we do. Reductions in HIV prevention investment. Local public spending on HIV prevention has fallen sharply over the past decade, even though there are more people with HIV today than ever before. At the same time, the health economic case for HIV prevention work is becoming increasingly clear. The lifetime cost of treating a person with HIV makes effective HIV prevention a sensible investment. The impact of failing to sustain investment in health promotion campaigns was starkly illustrated recently after large cuts in the Change 4 Life programme. Enquiries about healthy living fell sharply and funding had to be reinstated. Ongoing challenges. Given the changes in society and the reductions in HIV prevention spending, it s not surprising that the UK faces a number of ongoing challenges which contribute to ongoing HIV infections: Ongoing levels of HIV transmission amongst gay men. Over two thirds of UK-acquired HIV infections in 2009 were between gay men. And after three years of decline from 2007-2009, 2010 saw an increase in HIV diagnoses amongst UK gay men. Continuing high levels of sexually transmitted infections (STIs) amongst some groups of gay men, indicating ongoing HIV risk taking, and indicating a need for continuing work to help them change their behaviour Too many people have undiagnosed HIV. Up to a quarter of the UK s HIV infections go undiagnosed, and too many people leave sexual health clinics with their HIV still undiagnosed. HIV testing rates have increased significantly in recent years, and are higher than in some other Western European countries, but more remains to be done. Too many people start HIV treatment later than they should; over half of those diagnosed with HIV should already be on treatment. This not only damages their own health but also loses opportunities to reduce onward transmission. A new vision for action A bold new vision is needed for HIV prevention in the UK. At the heart of this must be a commitment to reduce the numbers of new HIV infections each year. To achieve this, THT believes we need a national commitment to: Halve levels of undiagnosed and late diagnosed HIV. Reduce levels of HIV risk behaviour among those with HIV and those at greatest risk of it. Use HIV treatment as prevention by increasing the numbers taking effective HIV drug treatment and supporting them to optimise their health and lifestyle. Involve individuals and communities in societal change to reduce transmission. This approach requires an effort from all of us: the people and communities affected by HIV, business and civil society, health services & professional groups as well as UK governments, local funders and planners.

Each year the NHS acquires lifetime HIV treatment costs of 1 billion. Halving undiagnosed and late diagnosed HIV It s clear that testing and reducing late diagnosed HIV must be a key part of our national prevention strategies. There is strong medical evidence to show that once people are diagnosed and on HIV treatment they are less likely to pass the virus on. Evidence also shows that, once diagnosed, many people change their sexual behaviour to avoid passing HIV on to others. Currently, up to 25% of people with HIV in the UK remain undiagnosed. When people do test, over half of them are already past the point where they should have started treatment. This means there are over 20,000 people in the UK who, in addition to risking their own health, may unknowingly be putting sexual partners at risk of HIV. Diagnosing and properly treating HIV is therefore key to reducing transmission. To do this, we need to: Strengthen and implement HIV testing policies to ensure that all sexually active gay men are tested every six months, or more frequently if they are diagnosed with an STI or have high levels of partner change. There should also be regular testing for other groups of people in high HIV risk groups. Expand access to HIV testing services in hospital, primary care and community settings. These should use the new rapid testing technologies, and should be networked for rapid access to follow up tests, treatment and support for those testing positive Expand approaches to notifying sexual partners of newly diagnosed people that they may have been at risk of HIV. These should include supporting people to notify their own partners and using the internet for confidential partner notification, as well as more traditional approaches Maintain opt out HIV testing within antenatal clinics, further develop it in sexual health clinics and expand it into other clinical areas as appropriate Use increased community involvement in testing to encourage helpful norms. Peer-delivered HIV testing amongst those communities at greatest HIV risk helps influence perceived community norms, as does increasing the visibility of people who test regularly within those communities. Large sums of money are already spent across NHS services on detecting and diagnosing HIV, but the above developments could be made cost-neutral overall by careful reorganisation of existing funding. Reducing HIV risk behaviour among people with HIV Though many people with HIV change their sexual behaviour to avoid infecting others, a great deal more can be done to support them in this. To do this we need to: Reduce the delay between diagnosis and starting HIV treatment. Despite almost universal access to HIV drugs in the UK, at least 52% of people with HIV begin treatment late, and 30% begin very late. Actively encouraging people to begin treatment when clinically indicated by British HIV Association (BHIVA) guidelines would be an important step in helping reduce the risk of transmission. Improve sexual health services for people with HIV. Behaviour change work should be integrated into clinical service delivery and resources directed towards those at greatest need, such as those gay men with recurrent STIs and risk behaviours. Provide structured behaviour change programmes for those people with HIV who find it difficult to change their sexual behaviour. We know that some people with HIV have trouble reducing their risk behaviour. Investment is needed in programmes shown to help them to change this. Integrate ongoing sexual health information and advice to all people with HIV as part of broader HIV health and lifestyle support. This should help reduce the health risks associated with STIs and Hepatitis C, as well as those associated with HIV co-factors such as recreational drugs and heavy drinking. These changes will need short term investment, especially to reduce the numbers of people starting on treatment late. There is, however, a very strong evidence base demonstrating the cost effectiveness of HIV treatment and this funding will deliver benefits.

Local spending on HIV prevention has fallen sharply over the last decade, even though there are more people with HIV today than ever before. Reducing HIV risk behaviour amongst those at great risk There is solid evidence that to reduce transmission we need to strengthen support for behaviour change around both risky sex and HIV testing, particularly in those groups at greatest risk. This work should be quality assured and evidence based. The following is needed: Nationally available, high quality HIV prevention and testing information and advice, including materials tailored to the needs of those communities at greatest HIV risk Smart, creative, tailored approaches to influencing community attitudes and behavioural norms about risk and testing amongst communities at high risk of HIV. Both the messages and the mediums used should be constantly refreshed to reflect changing social networks and behaviour. One to one behaviour change support to address people s risk and testing behaviour should be available locally. This should include approaches such as counselling, motivational interviewing and groupwork. The maintenance of needle exchange services and harm reduction work for injecting drug users to encourage and facilitate safer injecting behaviour. Currently, the main capacity for this is sited in NHS clinical services but the work needs to take place more broadly across clinical and community settings to enable wider access. Many local areas now lack access to a proper range of services to support behaviour change and rebuilding this will be an important part of tackling HIV. Using HIV treatment as prevention We know that HIV treatment, taken properly, reduces an individual s infectivity considerably. The UK is already effective at using treatment such that 51% of all people with HIV in the UK are estimated already to have undetectable levels of HIV. The UK should establish a goal of increasing this percentage to at least 65% over the next four years. There are now three ways in which treatment should be used as prevention. Everyone with HIV should be given the same ability to benefit from treatment on the NHS as a matter of public health. Everyone should be actively encouraged to start treatment at the clinically indicated time. This will need a concerted approach to support more people to begin treatment earlier than at present. Post exposure prophylaxis (PEP) should remain available to those who need it to reduce the possibility of HIV transmission after condom failure or other risky sex. We must explore the case for making HIV drug treatment available as pre-exposure prophylaxis (PrEP). Building on recent trials, we should explore PrEP for those people in the UK who are HIV negative but find it difficult to maintain safe sex. This should be linked to mandatory access to structured behaviour change work. These changes will require investment. We believe that the priority for any additional resources should be in direct proportion to the proximity to HIV, i.e. those diagnosed & eligible to start treatment should be the top priority. Engaging individuals & communities Since the start of HIV, UK communities at greatest risk and individuals within them have shown leadership in mobilising and protecting themselves. To build upon this progress we need to: Involve more people from HIV risk communities as peer educators and role models in HIV prevention work and to demonstrate their commitment to strengthened community norms. Increase public debate about safer sex and regular HIV testing by use of community media, role models and peer outreach events. Increase involvement and leadership from business and faith leaders in those communities most affected by HIV. Increase community involvement in the delivery of HIV services and prevention messages. Currently less than 5% of HIV services are delivered by organisations outside the statutory sector and this is a real missed opportunity in the fight against HIV.

Using society and structural changes to support HIV prevention There is good evidence from other fields of public health that societal and structural changes can have an important impact. Yet despite this, there have been few structural changes in HIV public health policy in the UK in recent years. THT believes we need the following structural changes: Legalisation of HIV home testing to make it easier for people worried about HIV to test in the privacy and convenience of their own home. Use of corporate social responsibility expectations that all commercial business venues serving high HIV risk groups stock HIV prevention and testing information as well as condoms and lubricant, and ensure these are in easy reach. Establishment of a corporate social responsibility expectation for online businesses of relevance to HIV prevention so that, for example, gay online dating sites always include appropriate messaging and access to HIV prevention support across the site. Labelling for sex films showing risky sex aimed at HIV high risk groups, reminding them of risks in the manner of tobacco labelling. More widespread debate about the role of sex in society, and about the growing sexualisation of society, including in the general and targeted media. Clarification of the current duties of Local Authorities to require access to HIV prevention services and needle exchange services Establishment of national Outcome Indicators in each UK nation to encourage local services supporting the reduction of undiagnosed and late diagnosed HIV Securing funding and leadership Investment in HIV prevention makes very good economic sense. Every HIV infection prevented saves the State around 280,000. Yet despite this, resourcing for community delivered local HIV prevention work has fallen in relative and real terms over the past decade. Less money is spent on HIV prevention now than in 2000, even though there are more than twice as many people with HIV today. To ensure adequate resourcing, public health funders in the UK must: Ensure that priority is given to resourcing HIV prevention behavioural and clinical work on a par with other public health areas. Have a clear local HIV prevention strategy in place to guide the commissioning of services. In England two nationally adopted strategies already exist, Making It Count for gay men, and The Knowledge, the Will and the Power for African people. Use the current evidence base of what works when commissioning and evaluate current and new work against defined health outcomes. Work with service providers to help them identify further sources of income to supplement state investment. The governments of the UK need to take the political lead on this. They need to ensure strong national HIV prevention programmes for people at risk of HIV and those already living with it, name HIV prevention as a vital public health outcome at a national policy level and include HIV prevention within wider national public health plans and strategies. Local Government also has a leadership role to play, by ensuring that HIV occupies a core place in local public health plans, by ensuring adequate resourcing for local HIV prevention programmes and by building local political consensus amongst elected representatives for HIV prevention. Summary The UK has a strong and internationally recognised track record in the field of HIV prevention. Despite this, we still face major HIV prevention challenges, in terms of reducing risk, supporting testing and ensuring treatment uptake. We have access to an unprecedented range of opportunities to tackle these challenges but are hampered by financial pressures, low levels of political leadership and cross-sectoral collaboration and poor prioritisation of sexual health within the wider public health discourse. This report has set out how all of us involved in the fight against HIV can play our part in changing this. The HIV and sexual health charity for life Website: www.tht.org.uk THT Direct: 0845 12 21 200 Registered office: 314-320 Gray s Inn R oad, Lo ndon WC1X 8DP Tel: 020 7812 1600 Email: info@tht.org.uk Terrence Higgins Trust, August 2011. Terrence Higgins Trust is a registered charity in England and Wales (reg. no. 288527) and in Scotland (SC039986). Company reg.no. 1778149. A company limited by guarantee. Design Felton Communication 020 7405 0900 Ref: 12411.