2020 Vision: making England s HIV prevention response the best in the world

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1 DISCUSSION PAPER 2020 Vision: making England s HIV prevention response the best in the world Introduction Effective HIV prevention makes good public health and economic sense. HIV remains one of the fastest-growing serious health conditions in England. Every HIV infection prevented saves the State around 280,000 i and saves a life from being damaged. Many of us play a role in the fight against HIV and this report is intended to stimulate debate about our personal, professional and communal responsibilities to stop HIV. It sets out strategies for the years ahead, some new and some needing renewal, and highlights ways that we can all work together to build the best HIV prevention response in the world. What s working well? England has much to be proud of in its response to HIV. In particular: The volume of HIV testing done each year continues to increase ii. We already have one of the highest levels of people with diagnosed HIV in care and on treatment, most with undetectable viral loads iii, thanks to the world-class care provided by the NHS and its skilled clinicians. Infections among the group at greatest risk, gay men, appear to have been stable in recent years. Condom use has saved many thousands from HIV infection and continues to be sustained by many people. Mother-to-child HIV transmission is at almost zero as a result of universal antenatal screening iv. 1 We have some of the lowest levels of HIV among injecting drug users of any nation in Europe as a result of sustained harm reduction programmes v. We have a world-leading HIV public health surveillance system giving better information about patterns of HIV need than most other countries. Where do we need to improve? England does, though, have a number of areas in which its response needs to improve. In particular: Levels of undiagnosed HIV remain far too high, especially considering that the majority of ongoing HIV transmission occurs from those with undiagnosed HIV. Partner notification levels are too low, meaning that too many people are not notified that they may have been exposed to HIV. We need to challenge and change sexual risk-taking behaviour in all communities at heightened risk of HIV transmission. In too many of its cities, England lacks the co-ordinated city-wide approach to HIV prevention seen elsewhere, and this is being exacerbated by local funding cuts to HIV prevention work. We need to broaden the understanding of HIV and its diagnosis among all non-specialist healthcare services. HIV stigma still plays a large part in reluctance both to test and to disclose a positive diagnosis, leading to poor personal and public health.

2 The UK is the sixth wealthiest nation in the world and has one of the best health systems anywhere in the world. As such, it is within our power to overcome these challenges. We need to re-energise and renew our approach to tackling HIV across England. We believe a new ambition is needed for HIV prevention in England - nothing less than having the best HIV prevention response anywhere in the world. Our ambition for England We believe that a new ambition for HIV prevention in England is needed: A 50% reduction in the numbers of people with undiagnosed HIV (10,000 people). A 125% increase in the number of HIV tests undertaken annually by people at greatest risk (an extra 250,000 tests a year). 75% of all people with HIV to be on HIV treatment and uninfectious. A measurable increase in condom use and harm reduction measures among those at greatest HIV risk. Tackling the social determinants of poor sexual health among those individuals and communities at greatest HIV risk. These targets would achieve our vision of substantially reducing the level of HIV transmission which occurs in England by A 50% reduction in people with undiagnosed HIV (10,000 people) By 2020, no more than 11% of those infected with HIV in England should remain undiagnosed. Exploring next generation approaches to diagnosing HIV such as viral load testing in high prevalence populations to diagnose those in primary infection. Maximising efficacy, affordability and availability of HIV self-testing so that those who want to pay for an HIV test at home are able to do so. Establishing new digital approaches to partner notification which empower people to maximise personal responsibility for their own sexual health and that of their partners. Expanded access to HIV testing for those at greatest HIV risk, including free at the point of use HIV home sampling via multiple routes and expanded HIV testing by voluntary organisations and community health services. HIV testing needs to be expanded in settings such as businesses and churches used by those at greatest risk eg, gay men and migrants from high prevalence countries. Further expanded HIV testing in general practice and significantly expanded hospital HIV testing through embedding this as normal practice in general medical admissions and relevant outpatient services. HIV testing as a routine, opt-out part of all sexual health service provision. Existing models of partner notification should be extended to increase uptake. More than a fifth of people with HIV are currently undiagnosed vi. This group accounts for at least two thirds of all HIV transmission in England. People diagnosed late with HIV are at greater risk of avoidable morbidity and mortality vii. 2

3 A 125% increase in the number of HIV tests undertaken annually by people at greatest risk (an extra 250,000 tests a year) Reducing levels of undiagnosed HIV as described above requires a step change in the volume of HIV tests undertaken annually by those at greatest risk, and a step change in access to testing. It also requires a culture shift in those communities so that regular and routine testing becomes a cultural norm. An extra 250,000 HIV tests should be undertaken annually within five years, focused on those communities at greatest HIV risk. Investing an extra 20 million per year across England as a whole to enable an extra 250,000 HIV tests to be undertaken annually. Relative to the lifetime and annual costs of HIV treatment for those infected with HIV each year viii, the 20 million required to expand HIV testing is a drop in the ocean, and represents a very significant return on investment. Establishing recall and support mechanisms for people who test HIV negative, to encourage regular and repeat testing and to provide support to help people stay HIV negative. Challenging the current costs of testing interventions and maximising the use of those which are most cost-effective. Co-ordinated local HIV prevention programmes which make HIV tests widely available, get full engagement from all organisations and businesses in contact with HIV high risk groups and which provide strong local leadership. Changing the culture of testing in communities at greatest HIV risk, through social marketing and information provision, to persuade more people to test and then to go on to test regularly. Establishing integrated local and national HIV prevention programmes which co-ordinate the delivery of interventions which heavily promote regular HIV testing. Access to GPs and other NHS services for people of uncertain immigration status. 75% of people with HIV to be on HIV treatment and uninfectious Treatment as prevention (TasP) is a key strategy for HIV prevention; by reducing infectivity among people with HIV it reduces the likelihood of HIV being passed on. It is also key to individual health, enabling most people to remain relatively healthy and, if diagnosed early, achieve a near normal life expectancy. 75% of people with HIV retained in care, on treatment, and uninfectious by England is performing well, with 61% of those with HIV on treatment ix and uninfectious, but we could do better. Ensuring that everyone diagnosed with HIV, regardless of location, is supported into care and followed up. This should include case management for people vulnerable to losing contact with HIV services and should ensure full access for undocumented migrants. New approaches to active case management to make sure no one with HIV loses contact with HIV services. Exploration of new next generation approaches to HIV treatment such as encouraging greater take-up of treatment irrespective of CD4 count x. Positive Prevention programmes, aimed at helping people with HIV optimise their health and establish a new positive prevention care pathway containing all services needed, such as sexual health, alcohol/ drug use and mental wellbeing. 3

4 Access to information and advocacy for people who are newly diagnosed with HIV to maximise their knowledge and motivation to begin treatment when indicated by BHIVA (British HIV Association) guidelines xi, and to understand the preventive benefits of HIV treatment. Delivery of peer and social marketing information and support for people in care, through a variety of settings and channels, to encourage appropriate take-up of treatment. Maintaining a network of high quality NHS HIV treatment centres across England, to ensure the capacity and capability to support the increasing numbers of people diagnosed as a result of the changes described elsewhere in this paper. A measurable increase in condom use and harm reduction measures among those at greatest HIV risk Condom use is the most effective means of preventing HIV transmission with research suggesting that, in the UK alone, condom use has prevented 80,000 infections since the start of the epidemic. It is therefore important that condom use is both sustained and wherever possible increased. Other approaches to reducing risk behaviour, such as Post-exposure prophylaxis (PEP), needle exchanges and sexual behavioural interventions, also have an important role to play in preventing HIV transmission. An increase by at least 10% in current levels of condom use among men who have sex with men (MSM) and increased acceptability and use of condoms among heterosexuals. Everyone at raised risk of acquiring HIV should understand this and be able to obtain appropriate help to manage their risk. Challenging the culture of non-condom use as being exciting or transgressive among some groups of people. 4 Expanding access to Pre-exposure prophylaxis (PrEP) for those with the ability to benefit, as the evidence base becomes fully established. Ensuring the availability of free or low-cost condom programmes for those at greatest HIV risk. The delivery of social marketing work to both encourage use of condoms and emphasise community norms about condom use. Access to PEP. Access to structured behaviour change interventions linked to clinical and community HIV services, so that people with the highest HIV risk behaviours are supported to change them. The development of new bio-medical interventions, eg, microbicides and vaccines that reduce the likelihood of HIV infection. Active encouragement of a broader range of risk-reduction approaches such as disclosure of HIV status. Maintaining a network of needle exchange and harm reduction services for injecting drug users. Tackling the social determinants of poor sexual health among those individuals and communities at greatest HIV risk HIV acquisition is driven not only by direct risk-taking behaviour but also by the social and personal conditions which impel and encourage that risk-taking. Moreover, community norms, perceived peer expectations and knowledge levels can operate to support or hinder HIV prevention and risk-taking. HIV transmission is dependent upon both individual risk-taking and relative risk levels in particular populations. Drug (including alcohol) use and mental health are particularly key determinants of risk for many people acquiring HIV or taking the risks which lead to poor sexual health.

5 s An increased knowledge of sexual health and increased confidence in sexual situations, decreased levels of depression or mental ill-health and a decrease in problematic alcohol or drug use within communities at greatest risk of HIV. Key influencers in the most at-risk populations are involved in and informed about HIV prevention and sexual health promotion and those profiting from those populations are active in supporting measures to reduce transmission and increase understanding of HIV. People with diagnosed HIV are equipped to manage their condition and prevent further transmission. Mandatory Sex and Relationships Education (SRE) in schools that covers sexuality, HIV and good sexual health and self-esteem. Integrated support within clinic and community settings for sexual health, mental health and dependency issues to be understood and managed by people living with HIV. Challenging community stigma around these key issues in order to support individual help-seeking behaviours. Developing corporate social responsibility expectations of those businesses profiting from communities at greater risk. In particular codes of conduct in supporting sexual health within those commercial social activities where risk may be heightened, including bars, saunas and online dating sites. A code of conduct for labelling films purporting to show condomless sex and aimed at HIV high-risk groups, reminding them of the risks. Online and telephone services which support peer-to-peer and specialist support for anyone, anywhere in England, to obtain anonymised help with sex, drugs and mental health. Access to specialist drug services focusing on recreational ( club drug ) use among MSM, working both to minimise harm and to reduce levels of problematical drug use. Active participation of people, groups and key influencers from the most at-risk communities in the development and delivery of HIV campaigns and services. Sustained community involvement, engagement and organisational development to increase our collective capacity to contribute to reducing HIV infections. Local, regional and national media and influencing work to improve public understanding and secure public and political support for HIV prevention and sexual health promotion. Reducing HIV infections year-on-year in England: success by 2020 The overarching goal of the measures suggested above should be to achieve a reduction in the level of HIV transmission occurring every year in England. By 2020, this should have significantly altered the treatment cascade and raised the percentages of people diagnosed, in care, on treatment and uninfectious to a degree that will help us to turn the tide on HIV in this country. 5

6 The achievement of this would enable: Significant benefits in health for people with HIV and those in the communities at greatest risk. Significant public health benefits through reduced HIV transmission. Significant cost savings for the taxpayer by reducing the costs of HIV for NHS and Local Government funders. With concerted effort both locally and nationally, these benefits are within our grasp. Doing so would give us the best HIV prevention response anywhere in the world, would showcase the strength of public health in England, and above all would transform the lives of tens of thousands of people, many of them in marginalised communities. i Public Health England, HIV epidemiology in London: 2011 data. ii Agahizu et al, HIV in the United Kingdom 2013 report: data to end Public Health England, London. iii Ibid. iv Ibid. v Global Report: UNAIDS report on the global AIDS epidemic vi Agahizu et al, HIV in the United Kingdom 2013 report: data to end Public Health England, London. vii Ibid. viii Gazzard, B. Moecklinghoff, C. and Hill, A., New strategies for lowering the costs of antiretroviral treatment and care for people with HIV/AIDS in the United Kingdom. ClinicoEconomics and Outcomes Research, 4: ix Agahizu et al, HIV in the United Kingdom 2013 report: data to end Public Health England, London. x Gazzard, B. Moecklinghoff, C. and Hill, A., New strategies for lowering the costs of antiretroviral treatment and care for people with HIV/AIDS in the United Kingdom. ClinicoEconomics and Outcomes Research, 4: xi British HIV Association guidelines for the treatment of HIV-1-positive adults with antiretroviral therapy HIV Medicine (2014), 15 (Suppl. 1),