Chapter 4: HIV
Where we are now
HIV is a major public health challenge for Scotland. Recognising this, the Scottish Government published the HIV Action Plan in November 2009. (Scottish Government, 2009a).
Since 2001, the number of people diagnosed with HIV, known to be alive and currently living in Scotland has more than doubled (an estimated 5,100 by the end of 2010) (Health Protection Scotland, 2011). This increase is due to people with HIV coming to Scotland from areas of high prevalence; sustained new transmissions among MSM and effective drug regimens sustaining and improving the quality and length of life of people living with HIV.
Whilst HIV testing has been increasing year on year, a considerable proportion (around 25%) of individuals remain undiagnosed or are diagnosed at a late or very late stage of infection.
Currently, access to HIV specialist clinical care in Scotland is excellent, with only a small proportion of those living with HIV not accessing such care. Nevertheless, inconsistencies in access to, and provision of, optimal services are evident across NHS Boards (Johnman, 2009). Work being taking forward through the HIV Services Standards (Healthcare Improvement Scotland, 2011), along with the implementation of the Framework, will continue to drive forward improvements in this area.
The HIV Action Plan (Scottish Government, 2009a) set out the Scottish Government's key goals for HIV, including: a renewed commitment to tackle the virus through more focussed and effective prevention; increased uptake of testing; and by ensuring that people living with HIV receive high quality treatment, care and support.
Developed by a wide range of committed and expert stakeholders, the HIV Action Plan constitutes short- and medium-term actions to address HIV in Scotland.
Where we want to be
The HIV element of the Sexual Health and Blood Borne Virus Framework is not a replacement of the HIV Action Plan. It is intended that the Framework approach will support multi-agency organisations to continue to focus on the key aims of the Action Plan:
- reducing new transmissions;
- reducing undiagnosed HIV through increased testing and early diagnosis;
- ensuring universal access to high quality HIV treatment and care; and
- supporting those living with, and affected by, HIV in Scotland.
Underpinning these aims is the need to address the HIV-related stigma and discrimination experienced by people living with and affected by HIV and to enable a society and culture whereby the attitudes of individuals, the public, professionals and the media in Scotland towards HIV are positive, non-stigmatising and supportive.
Many of the actions within the HIV Action Plan remain integral and will be a key part of the delivery of this Framework, including:
- NHS Board needs assessment and planning for HIV;
- Healthcare Improvement Scotland Standards for HIV Services;
- educational and training needs in the HIV-related workforce;
- clinical IT developments;
- national procurement of HIV anti-retroviral therapy; and
- guidance on HIV prevention in key populations.
The Framework translates this agenda into the high level Framework Outcomes:
Framework Outcomes: HIV
- Fewer newly acquired HIV infections
- A reduction in health inequalities associated with HIV
- People affected by HIV live longer, healthier lives
- A society whereby the attitudes of individuals the public and professionals and the media in Scotland towards HIV are positive, non-stigmatising and supportive
The Multi-Agency Approach
A multi-agency, collaborative approach to the prevention, testing, treatment and care of HIV and the provision of support services is essential. In some areas, locally established Managed Care Networks ( MCNs) for hepatitis C have been expanded to encompass blood borne viruses as a useful structure for multi-agency working, ensuring the participation of all partners, including people living with HIV.
- There should be strong links between Multi-Agency Sexual Health Strategy Groups, Blood Borne Virus MCNs, Alcohol and Drug Partnerships and Community Health Partnerships which, in turn, will feed into the Community Planning process.
All partners have a role in influencing behaviours, lifestyles and risk factors. They should help implement evidence-based prevention initiatives, support testing, strengthen early engagement with treatment services and should provide support services for those living with HIV.
In particular, it is essential that Local Authorities ( e.g. education, community services, social work, housing) and the Third Sector both recognise and are recognised for the role and contribution they make to tackling all three blood borne viruses ( HIV, HCV, HBV).
- Where relevant, Local Authorities should link progress against Framework Outcomes to Single Outcome Agreements in conjunction with local partners.
- The multi-agency approach should centre on, and involve people living with, HIV to ensure effective responses to need and in the planning of HIV services either directly or through relevant advocacy and support groups.
Regional Approaches and Sharing Expertise
Regional networking has been identified as having an important role in both HIV prevention and in meeting the needs of people living with HIV in Scotland (Johnman, 2009) in order to share expertise and best practice as well as clinical resource. Few Boards can offer all of the clinical resources that are required to support high quality HIV clinical care. Working regionally can help ensure that people living with HIV have equitable access to safe, effective and person-centred clinical services and enable effective prevention approaches that benefit from cross NHS Board and cross-partner working.
The National Co-ordinators will offer support to NHS Boards and other organisations to work together national and regionally, where required. This will include, for example, working in conjunction with the Convention of Scottish Local Authorities ( COSLA), Scottish Government National ADP Support Co-ordinators, Scottish Prison Service and appropriate Local Authority national bodies ( e.g. Association of Directors of Social Work).
A national HIV integrated care pathway will be developed which NHS Boards and their partners will be able to utilise and adapt to local need. An HIV Clinical Leads network will support the sharing of expertise, experience and advice.
Delivering the Outcomes
The following section details the recommendations and strategies multi-agency partners should adopt to contribute towards delivery of each of the Framework Outcomes. Progress against outcomes will be measured through the agreed set of national indicators (see Appendix 1).
Outcome 1: Fewer newly acquired blood borne viruses and STIs; fewer unintended pregnancies. 
Efforts to reduce new transmissions of HIV should focus on where they are likely to have the highest impact - all people living with HIV, MSM and those who have come from areas of high prevalence, notably African countries.
Transmission among people who inject drugs and between heterosexuals who do not fall into a clearly defined risk group is less common but the potential for such transmission exists. It is therefore important that all groups are considered in terms of HIV risk and HIV related sexual health. Raising awareness of HIV is important for the prevention of infection in all ages, including those who may not consider themselves at risk.
For young people, the Health and Wellbeing component of Curriculum for Excellence should provide the opportunity to link HIV with other health improvement issues and risk taking behaviours. Parents and carers also have an essential role to play in increasing the awareness and understanding of HIV in young people.
- Multi-agency partners should work together to ensure:
- effective links between prevention, diagnosis, treatment and care services in the statutory and Third Sector. Prevention should be a key part of all treatment and care services;
- the use of the most up to date evidence to inform prevention approaches within local NHS Board multi-agency HIV needs assessments and plans;
- engagement, support and involvement of those most at risk of HIV transmission, notably MSM and those from areas of high prevalence, particularly African countries;
- regular training, education and continuing professional development to ensure the competence of the health and non-health HIV-related workforce in relation to HIV prevention. Staff should be provided with the resources they require in order to feel confident in discussing issues, including sexual health, with people at risk of and living with HIV. This should include the implementation of HIV educational solutions as identified and developed through the NHS Education for Scotland ( NES) HIV expert advisory group;
- delivery of effective awareness raising and social marketing approaches, including the continued implementation of HIV Wake Up and local/regional social marketing activities;
- that learning about HIV is built into Curriculum for Excellence experiences and outcomes , includingRelationships, Sexual Health and Parenthood ( RSHP) education. RSHP education should be provided to all young people, in all schools and wherever learning takes place, with delivery in line with equality and diversity legal obligations. This should include young people not in school, young offenders and those who are looked after and accommodated; and
- the implementation of:
- Healthcare Improvement Scotland Standards on HIV Prevention;
- NHS Health Scotland HIV Prevention Guidance and Recommendations.
Outcome 2: A reduction in the health inequalities gap in sexual health and blood borne viruses
Those most at risk of HIV in Scotland are MSM and those from areas of high prevalence, notably African countries. The inequality gap seen in HIV manifests in relation to race and sexual identity, more so than socio-economic status. This is, for example, pertinent to those living with HIV in Scotland in black and minority ethnic ( BME), particularly African, communities, who may face race related stigma as well as discrimination relating to their HIV status.
People living with HIV may also face financial hardship, sometimes for reasons that are not related to their health status. Living in severe financial hardship can impact on someone's ability to live well with HIV. Those who were diagnosed before the emergence of effective drug therapy may not have prepared for older age and thus may require additional support. Third Sector organisations have a key role to play in supporting such vulnerable populations.
Many people living with HIV are capable of having a fulfilling working life and of obtaining the health, financial and social benefits of such. Some support may be required in order to enable people living with HIV to maintain a working life for as long as they can and wish to.
Strategies to reduce new transmissions of HIV (see outcome 1) and to ensure people living with HIV have longer, healthier lives (see outcome 3) will help to address HIV and thus to reduce inequalities.
- Multi-agency partners should be proactive in working to prevent new transmissions of HIV and to provide support for those living with HIV in order to facilitate a reduction in the inequitable impact of HIV in Scotland.
- Multi-agency partners should work together to support people living with HIV who are facing financial hardship.
- Multi-agency partners should work together to support people living with HIV in maintaining a working life for as long as they can and wish to. Information should be made available to both employer and employee on the effect that living with HIV may (or may not) have on their working life and on the requirement for confidentiality, avoidance of stigma and discrimination and compliance with equality legislation.
Outcome 3: People affected by blood borne viruses lead longer, healthier lives 
Living a longer and healthier life with HIV requires a holistic approach to health and wellbeing. Provision of, for example, specialist clinical, psychological, social and peer support is critical in maintaining contact and support from the moment of initial diagnosis through to management of HIV as a long-term chronic condition. For those who were diagnosed before the emergence of HAART this also includes adjustment to longer life expectancy and improved quality of life with HIV, which had not been anticipated before the availability of these highly effective drug treatments; this may include, for example, the provision of support to those who may have found difficulty in forming and/or maintaining relationships, following their diagnosis.
Diagnosis - Late Diagnosis and Undiagnosed HIV
It is critical that people living with HIV are diagnosed at the earliest opportunity. A considerable proportion, approximately 25%, of people infected with HIV in Scotland remain undiagnosed.
Undiagnosed infection risks further transmission and can result in extremely poor health outcomes and a reduction in the effectiveness of HAART for those living with HIV.
Testing for HIV has been increasing year on year; however, a notable proportion of individuals each year are diagnosed at a late (47% in 2010) or very late stage of infection. Missed opportunities within Primary Care and non- HIV related inpatient healthcare services can be a barrier for the early diagnosis and treatment of HIV.
Normalisation of attitudes amongst the public and professionals towards HIV testing is important in order to increase HIV testing rates and to enable HIV testing to be offered across a much wider variety of settings including primary and secondary care services (Burns and Martin, 2007).
Co-infection with other blood borne viruses or STIs can compromise the health of people living with HIV and can increase the risk of transmission, so testing of vulnerable populations (including those already diagnosed with hepatitis B, hepatitis C and/or syphilis) is key.
Treatment, Care and Support
People living with HIV require comprehensive treatment and care services. It is essential to ensure that all those who require specialist HIV treatment and care receive it regardless of transmission route, co-morbidities or any other factor irrelevant to good quality, safe, patient-centred and effective prevention, treatment and care and support.
There should be clear links and referral pathways between specialist HIV treatment and care and other services. This network of services which can enable joined-up clinical management and care, can be described as a 'treatment and care network' (Healthcare Improvement Scotland, 2011). Within this network, key services include primary care, sexual health, maternity, children's, mental health, addictions, men's health and older people's services.
Women's health, particularly in terms of contraception and pre conception advice and assessment needs, should be considered.
HIV is now considered to be a long-term chronic condition. As such, primary care services are an important part of the care pathway for people living with HIV and, for example, can have an important role in monitoring and minimising co-morbidities of HIV and its treatment.
- Multi-agency partners should work together to ensure people living with HIV can live longer, healthier lives through:
- continued engagement with, and testing of, at risk populations with repeat testing being offered every 6-12 months for those who remain at ongoing risk;
- increased knowledge and awareness of HIV in all populations;
- the normalisation  of testing within all populations to encourage testing and to reduce late diagnoses and issues of stigma around HIV testing and diagnosis;
- routinely offering HIV testing to individuals who present with clinical indicator conditions that could point to underlying HIV infection ( BHIVA, BASHH and BIS, 2008);
- the recommendation of HIV testing to individuals who test positive for hepatitis C, hepatitis B and/or syphilis in order to address potential complications of co-infection;
- regular training, education and continuing professional development to ensure the competence of health and non-health HIV-related workforce; staff should be provided with the resources they require in order to feel confident in the discussion and provision of HIV testing, diagnosis and treatment in addition to those issues which affect people living with HIV such as social and emotional needs and sexual and reproductive health. This should include the implementation of HIV educational solutions as identified and developed through the NHS Education for Scotland ( NES) HIV expert advisory group;
- ensuring that all those who require specialist treatment and care and support are able to receive it; this may include consideration of HIV Home Delivery, where appropriate;
- ensuring the provision of high quality HIV specialist treatment and care in order that all people living with HIV, including those living in remote and rural areas, have access to the full range of HIV-related services through national and regional, as well as local, care pathways;
- ensuring that primary care is engaged in the development and implementation of local HIV strategies, including the development of cost effective models of care, with clear pathways of care for the individual;
- ensuring that people living with HIV have access to specialist sexual healthcare and preconception advice/assessment;
- ensuring that support services for those living with HIV are available throughout Scotland, including for those living in remote and rural areas. Key to ensuring a holistic approach to wellbeing for people living with HIV, these should be offered via NHS Boards, Local Authorities and Third Sector organisations; and
- implementation of:
- Healthcare Improvement Scotland HIV Service Standards;
- NHS Quality Improvement Scotland Sexual Health Standard 5 to ensure high quality sexual and reproductive healthcare for people living with HIV; and
- NHS Health Scotland recommendations on the retention of people living with HIV in clinical services.
Outcome 5: A society whereby the attitudes of individuals, the public, professionals and the media in Scotland towards sexual health and blood borne viruses are positive, non-stigmatising and supportive.
It is acknowledged that HIV-related stigma and discrimination can be a barrier to testing. Those at risk of, or living with, HIV may be wary of accessing services or being open about their condition or risk behaviours because of (real or perceived) attitudes toward HIV, or due to fear of discrimination.
Changing the culture in Scotland around HIV is essential not only to increase awareness and reduce onward transmission of infection, but to ensure that those people living with, and affected by, HIV are able to feel that they are equal and valued members of our society.
Many people living in Scotland have outdated knowledge about HIV and the way in which it is transmitted, life expectancy and quality of life and the realities of living on HIV treatment for a lifetime.
Through this outcome we aim to see real change in attitudes toward HIV in Scotland.
- Efforts to promote a positive approach to HIV in the media should continue nationally and locally through linking in with media groups, such as the National Union of Journalists and national broadcasting regulators.
- Multi-agency partners should work together to ensure:
- that work to promote awareness and understanding of HIV continues locally, regionally and nationally;
- the building of learning about HIV into appropriate Curriculum for Excellence experiences and outcomes, including Relationships, Sexual Health and Parenthood ( RSHP) education, which should be provided to all young people, in all schools and wherever learning takes place, with delivery in line with equality and diversity legal obligations. This should tackle issues around stigma and discrimination in addition to awareness raising and prevention and should address HIV in Scotland as well as internationally; and
- regular training, education and continuing professional development to ensure the competence of the health and non-health HIV-related workforce; ensuring an understanding and knowledge of issues around stigma and discrimination and demonstrating commitment to equality and diversity. This should include the implementation of HIV educational solutions as identified and developed through the NHS Education for Scotland ( NES) HIV expert advisory group.
The Scottish Government will monitor progress in respect of delivery of the outcomes through the Framework Indicators detailed in Appendix 1.
The Scottish Government, including the National Co-ordinators, Special Health Boards and other national organisations will have key roles in progressing the achievement of the Framework Outcomes and supporting multi-agency partners. These roles are set out in Chapter 7.
Table 4.1 - Outcome 1: Fewer newly acquired HIV infections
- Among people undergoing repeat HIV antibody testing between 2005-2009, the incidence of infection rates (new transmissions) were 15, 1.5 and 1.5 per 1000 person years for MSM, heterosexual men and women and people who inject drugs respectively; the rate in MSM has remained unchanged since the late 1980s.
- Among MSM attending gay bars in Glasgow and Edinburgh 2008, 40% reported practising unprotected anal intercourse in the previous 12 months. This rate was similar to that reported in 2005.
- Although a decline in infectious syphilis among MSM was observed between 2008 and 2009, the incidence of rectal gonorrhoea increased during this time.
- The annual prevalence of HIV among MSM undergoing testing in Scotland has remained constant at around 3-4% in recent years.
- The average annual number of HIV diagnoses and average prevalence of HIV among people who inject drugs having a named test during 2004-2008 was 19% and 0.6%, respectively. These figures are considerably lower than those recorded prior to this period. A major decline in the transmission of HIV among people who inject drugs in Scotland occurred contemporaneously with the implementation of harm reduction measures, namely needle exchange and methadone maintenance therapy in the late 1980s and early 1990s.
- In 2008, the prevalence among heterosexual men and women whose geographical region of exposure is sub-Saharan Africa was 7.3%; this compares with 0.1% in those whose region of exposure is the UK.
- Prevalence of HIV among UK-born women giving birth in Scotland has remained constant at around 0.04% between 2004 and 2008.
Table 4.2 - Outcome 3: People affected by HIV lead longer, healthier lives
- At the end of 2010, an estimated 5100 individuals were living with HIV in Scotland; of these, an estimated 3803 (75%) had been diagnosed and 1300 (25%) were estimated to remain undiagnosed.
- There were 360 new reports of HIV diagnoses made in Scotland during 2010; this compares to an average of 394 new diagnoses made each year between 2004 and 2008 and 429 reported in 2009.
- There has been a two-and-a-half-fold rise in testing since 2003 with 43,726 individuals tested in Greater Glasgow & Clyde, Lothian, Tayside, and Grampian NHS Boards combined during 2008. The majority of testing (80%) is performed in the genitourinary medicine ( GUM) clinic setting.
- Of 357 individuals enrolling for the first time in HIV specialist care in 2010, 169 (47%) had a diagnosis of late infection ( CD4 count <350) with 99 (59%) of this group of patients with evidence of a very late diagnosis ( CD4 count <200) of HIV infection. The proportion diagnosed late was 46% and 48% among MSM and heterosexual men and women, respectively. Among the heterosexual group, those most likely to be diagnosed late comprise those born outwith Scotland. (52% versus 47% of those who are born in Scotland).
- Of 3339 individuals attending for HIV treatment and care in the 12 months up to 31 st December 2010, 80% were on antiretroviral therapy (at levels of triple therapy or higher).
- Of 2616 individuals receiving antiretroviral treatment (at levels of triple therapy or higher) and attending for viral load monitoring in the 12 months up to the 31 st December 2010, 96% achieved viral suppression (as indicated by a viral load of <400 copies per ml at their latest visit).
- The number of diagnoses of AIDS and deaths among HIV-infected individuals has remained stable at around 41 and 49, respectively between 2005 and 2009. An average of 15 deaths each year are among those with an AIDS diagnoses.
- Thanks to effective treatment, the over-50s are the fastest growing group of people with HIV in the UK (Power et al, 2010).
- Evidence shows that people living with HIV are less likely to be in paid employment and one in three people diagnosed with HIV in the UK have experienced severe economic hardship (National Aids Trust, 2008).