Thursday 19 April 2018
"There should be no doubt that a person with sustained, undetectable levels of HIV virus in their blood cannot transmit HIV to their sexual partners," Chloe Orkin, BHIVA Chair.
The British HIV Association (BHIVA) today (19.04.2018) introduces new Standards of Care for people living with HIV in the UK. The Standards, which update earlier versions in 2007 and 2013, are designed to provide a reference point against which to benchmark the quality of HIV care in the context of the changing needs of patients and the current financial pressures. They provide information to support top quality care and to inform commissioning decisions to meet the growing need for more efficient and cost-effective services.
The new Standards are evidence based, and have been developed in partnership with care providers, professional associations, commissioners and people living with HIV. They cover the range of care needed from diagnosis to end of life, taking a holistic view of an integrated approach embracing overall health and well-being, as well as clinical care.
There are eight quality Standards, covering the care that any adult living with HIV in the UK should expect to receive. Each one presents a rationale, quality statements and measurable and auditable outcomes. Three new sections have been introduced looking at HIV prevention, stigma and well-being, and HIV across the life course - young adults and adolescents, young to middle adulthood, older age and palliative care.
"Over 96% of people in HIV care in the UK are on antiretroviral therapy exceeding the UNAIDS target (90%), assuring a normal life expectancy," Public Health England, March 2018.
Standard 1: Testing, diagnosis and prevention, describes effective testing strategies that aim to reduce the proportion of people living with HIV who are unaware of their diagnosis, or who present with advanced infection. This is crucial to ending the HIV epidemic.
Estimates suggest that there are currently around 13,000 people in the UK who do not know they are HIV positive (all figures from Public Health England 2016.) These people can unknowingly transmit HIV to others, unlike the majority (96 per cent) of those attending HIV clinics on ART, of whom 94 per cent have an undetectable viral load. 39 per cent of 6,095 new diagnoses were made at a late stage, which results in poorer health outcomes and lower life expectancy.
Effective HIV testing strategies should be tailored to local populations and maximise the opportunity for testing in both non-clinical and clinical settings. Community testing initiatives have been found to be particularly effective among gay and bisexual men, and black African men and women. Self-sampling and self-testing have emerged as acceptable and convenient methods for accessing an HIV test. The impact of regular testing is shown in the fall in diagnoses in five London clinics in 2017, where it is thought to be a key factor.
"People living with HIV need to be seen as a whole not just a viral load, and becoming undetectable is not seen as the end game, our journey of living with a stigmatised condition can be an ongoing psychological burden if not supported or addressed," Mel Rattue, Positively Mindful.
Despite highly effective ART, psychological and social problems persist, as does the experience of HIV related stigma. People attending HIV care services in the UK have highlighted the need for health professionals to better identify and manage their physical and psychological concerns in order to achieve their life goals.
Stigma still exists in healthcare services themselves, and the Standards call for training for all healthcare staff on how to identify its impact and effects, including what it is, how it is manifested, the consequences on mental well-being and behaviour, as well as how issues can be addressed practically.
"With greater focus on the wider spectrum of long-term condition management, in all settings and across the life-course, care provided for people living with HIV can support optimal functioning, participation and well-being," Darren Brown, Specialist HIV Physiotherapist, Vice Chair Rehabilitation in HIV Association (RHIVA.)
Standard 7 recognises the diverse needs of people living with HIV at different stages in their lives, bringing together relevant aspects of the Standards. It begins with young adults and adolescents and goes on to look at young to middle adulthood (ages 25 to 65 years) and older age which includes high quality palliative care.
Young adults and adolescents living with HIV should have care and support that is young-person friendly and at convenient times and locations. Sexual healthcare and contraception services should be part of an integrated care package, which also includes an awareness of potential risks this age group is particularly vulnerable to, such as sexual exploitation, coercion and sexual assault.
Young to middle adulthood includes the period of reproductive health and employment. Supporting people to plan and achieve their wishes to have children is important, as covered in Standard 5, Sexual and reproductive health. Adults living with HIV have higher vulnerability than the general population to anxiety and depression, drug and alcohol dependency, poor housing, stigma, poverty and immigration status. Services must take these care needs into account. It is also important that mental health is assessed routinely and appropriate services are in place to support all people living with HIV, as covered in Standard 6, Psychological Care.
Testing needs to target older age groups, as there has been an increase in the number and proportion of people over 50 years being diagnosed with HIV, and these are more likely to be late diagnoses. Effective treatment means that people with HIV are living longer, leading to comorbidities, particularly in the areas of cardiovascular disease, osteoporosis, menopause and dementia. This is an area where there is significant emerging knowledge.
BHIVA Standards Co-Chair, Ann Sullivan emphasises the contribution made by people living with HIV to the Standards: "Patients have had a key role in every stage of the development and production of these Standards: proposing the new areas to be covered; being actively involved in all writing groups; responding to the public consultation and recommending, volunteering for and organising the real representation seen in the Standards' imagery. We hope that these Standards will deliver improved outcomes for people living with HIV in the areas that are important to them."
BHIVA Chair, Chloe Orkin comments: "This third set of BHIVA Standards has been developed from the best available evidence, with the aim of delivering high quality services to achieve the best possible outcomes for people living with HIV.
"There has been enormous progress in HIV treatment and care in the last five years and we are proud to say that outcomes for people living with HIV in the UK are among the best in the world. They now have a very similar life expectancy to the general population, but this brings with it fresh challenges.
"On the one hand we must manage the complex co-morbidities of an ageing HIV population but on the other we welcome the very positive impact of effective medications on HIV transmission. Increased testing, alongside prevention interventions such as pre-exposure prophylaxis (PrEP), are leading to real breakthroughs in limiting the spread of infection and new diagnoses.
"We hope that these new Standards will provide a framework to inform and support commissioning decisions both within and outside the NHS. In addition to targeting all healthcare professionals, they are also there to inform people living with HIV, and those who advocate for them, about the care they should expect to receive when they access HIV services."
For further information, please contact Jo Josh: +44 (0)7787 530922
1. The BHIVA Standards of Care 2018 can be viewed on line via this link http://www.bhiva.org/standards-of-care-2018.aspx from 09.00 hrs on Thursday 19 April. There are eight Standards: 1. Testing, diagnosis and prevention; 2. Person-centred care; 3. HIV outpatient care and treatment; 4. Complex HIV care; 5. Sexual and reproductive health; 6. Psychological care; 7. HIV across the life course; 8. Developing and maintaining excellent care.
2. The British HIV Association (BHIVA) is the leading UK association representing professionals in HIV care. Since 1995, we have been committed to providing excellent care for people living with and affected by HIV. BHIVA is a national advisory body on all aspects of HIV care and we provide a national platform for HIV care issues. Our representatives contribute to international, national and local committees dealing with HIV care. In addition, we promote undergraduate, postgraduate and continuing medical education within HIV care.