Disengagement in HIV care is a global issue but community leadership holds the key
Disengagement in HIV care is a global issue driven by inequalities and intersecting forms of stigma and discrimination. At last week’s International AIDS Conference in Munich, National AIDS Trust and the HIV & AIDS People’s Alliance of Kenya hosted an event which explored the issue and how we can better support communities to live well with HIV.
The international community is unlikely to reach the 2030 targets without action to find and re-engage people in HIV care. Disengagement from care can be particularly common in lower income countries where health systems and patients can face many barriers to care, but it is becoming a significant problem in higher income countries, including the UK.
In England, more people living with HIV have disengaged from care than remain undiagnosed. Hospitals in urban areas are reporting that people previously diagnosed with HIV but not accessing care are now the leading driver of hospital admissions related to HIV. Leaving care is the result of many factors, including experiencing complex medical and mental health needs, poverty, discrimination and fear of stigma.
Addressing disengagement is central to the HIV response
Our event brought together leading global community advocates and researchers to explore what drives disengagement from care and how we can end this health inequality. Community-led and person-centred approaches, including peer-support, are pivotal in supporting retention in care, but are often underfunded by governments.
During our event, Veronique Martin from the UK Health Security Agency (UKSHA) presented data from the UK showing that in 2022 up to 14,000 people living with HIV had disengaged from care. UKHSA now supports clinics with lists of people with a 12-month gap in care. With the right resourcing and partnerships with community organisations, this has the potential to support local re-engagement strategies as has been done effectively in south east London.
Veronique also highlighted that opt-out blood-borne virus testing in very high prevalence emergency departments in England has also played a key role in not just finding new diagnoses, but also people who had disengaged from care. It is welcome that opt-out testing is being expanded to all high prevalence areas in England and funding will be given to the voluntary sector to provide peer support for those newly diagnosed or re-engaged in care.
Also speaking to the UK context, Dr Rageshri Dhairyawan from Barts Health discussed the SHIELD Study that explored engagement in HIV care in London through the disruption of the COVID-19 pandemic. They found that some people who had previously disengaged in care returned during the pandemic, whereas others returned. With the SHIELD Study that will be published in the coming months considering what influences care engagement from the viewpoint of both service users and service providers, it offers key insights for the UK’s HIV response and underscores the importance of ensuring person-centred care.
Learning from overseas
Whilst the UK is fortunate to have growing research into care engagement and local re-engagement projects (including work by our voluntary sector partners such as the Fast Track London Getting To Zero Collaborative, Brigstowe and George House Trust), our domestic response should learn from work happening internationally. During our event, we were pleased to have been joined by two international HIV community advocates who are leading impactful projects.
Idris Mwendwa from HIV & AIDS People Alliance of Kenya highlighted how the anti-rights movement in Kenya and criminalisation of people from key populations were leading to people disengage in care, with services being significantly impacted. Joyce Ouma from Y+ Global spoke about the barriers young people living with HIV face and how stigma, together with limited treatment options, were preventing some from engaging in care.
However, Idris and Joyce highlighted how peer led interventions were particularly effective in encouraging re-engagement in care and living well with HIV. They also highlighted the impact of tailored services for communities that face structural inequalities and barriers for remaining in care, including young people and the LGBTQ+ community. Despite the UKHSA and UCL Positive Voices Survey highlighting marked inequalities by race, age and gender, communities in the UK have unmet needs in key areas which is being exacerbated by significant funding restraints facing the NHS and the voluntary sector.
What must UK Governments do to get people back in care?
To tackle these inequalities and learn from what works internationally, UK Governments and commissioners must adequately support community-led interventions and ensure provision of both tailored and culturally competent support services for people living with HIV across their diversity.
The UK Government has committed to developing a new HIV Action Plan. The new Action Plan should respond to what the data and experience of people living with HIV is telling us. As part of this, the Government should develop national programmes to find and re-engage people living with HIV who are not in care, while supporting everyone in care to live well with HIV.
The International AIDS Conference highlighted the pivotal role of community leadership and continued pressing need for activism. National AIDS Trust looks forward to partnering with communities and the HIV sector to ensure UK Governments take the right actions to support retention in care. You can stay updated and join our fight by signing up to National AIDS Trust’s newsletter.
If you have registered for the International AIDS Conference, you can watch our event here.