This post is from The King's Fund Blog
This is both the best and the worst time to be living with HIV. I should know – I was diagnosed with HIV in 1990.
More than 25 years on, clinical care is excellent and treatment not only works but results in an undetectable viral load (the level of HIV in the blood) that ensures we cannot pass on HIV, removing a huge burden from living with the virus. We are ageing with HIV – which is great – but, for many, ageing comes with complex health conditions compounded by layers of stigma. All at a time of public health disinvestment, third sector funding cuts and political uncertainty.
I did the Project 100 peer mentoring training (which equips people living with HIV to provide peer support to others living with the condition) the week before Hampshire’s only HIV support service closed due to public service cuts. At the farewell event, a woman stood up and said, ‘I don’t know what to do. I have been in the asylum process for years. I am disabled and sleeping on my sister’s sofa because I can no longer climb the stairs. My life is in limbo and I can’t go on like this.’ A single tear ran down her cheek.
I felt compelled to step into the support gap and help her, and now it is just me and her: me pushing her up and down the streets in my mum’s wheelchair; both of us trying to navigate the complexities of immigration, social care, local authority services, disability rights. For her, the fear of HIV disclosure and having to retell her story over and over again just adds to the stress. This is what it looks like to live at the sharp end of policy decisions.
Stigma has barely eased in my 27 years. It can still be a major barrier to testing and treatment. It is why my friend decided against an HIV test and was only diagnosed when she fell ill with irreversible neurological complications. Stigma disrupts quality of life and wellbeing. It adds an extra layer of anxiety to daily life, especially if you live in a community where HIV is highly stigmatised. It can touch everything, from worrying about where to dispose of empty pill boxes in a shared household to never saying ‘HIV’ out loud. At policy level, we saw appalling stigmatising attitudes in the response to the commissioning of PrEP.
Securing good quality of life for people living with HIV is about more than achieving an undetectable viral load. We need everyone to commit to addressing stigma in health care services, in attitudes, in policies and in practice. We need new models of care that are joined up and responsive, and commissioning that works for us and with us. HIV services have to be designed to fit everyone affected by HIV, in all their diversity.
Working ‘with us’ means resourcing community engagement, including partnership-building, so that we can share and learn from other patient groups. Without resources we struggle to offer peer support, treatment literacy, community representation – the things that people living with HIV have been doing well for decades and that empower people to become expert patients.
Community involvement doesn’t come as a plug-in. We have to be at the centre of decision-making – in both our own health and in HIV services. If there was a pathway for meaningful involvement in support service provision, we would not be losing services but re-designing them. Good support services help ensure we stay in treatment and care (for life), support us to navigate the complexities in our lives, facilitate peer mentoring and patient engagement, and give us safe and stigma-free spaces.