Meaningful involvement of people living with HIV has always been fundamental in developing an effective HIV response. Even before it was explicitly included in the 1983 Denver Principles, HIV policy, advocacy and research has been upheld and driven by the labour of people living with HIV.
However, we know that people living with HIV do not share a universal experience. The data we have shows that significant health disparities are faced by many communities, including Black communities. In 2023, Black African people accounted for 64% of new HIV diagnosis even though they make up just 2.8% of the UK’s population. This does not stop with rates of new diagnosis: we are seeing a 40% increase in late diagnosis for Black African people in 2023 which can worsen health outcomes.
This Black History Month the theme is Reclaiming the Narratives – a time for Black communities to tell our experiences in our own words and on our own grounds. Health inequalities faced by Black people with and at risk of HIV are not new – and that is the problem. While testing, PrEP and treatment are free, not all the initiatives and services that exist manage to effectively reach and engage Black communities because – it must be acknowledged – their experience of living with or preventing HIV is shaped by race and culture. When services are not tailored to reflect and acknowledge those culture experiences, they fail to account for key elements of how people move through the world, like how their background impacts their healthcare, needs and behaviours.
This year, with One Voice Network, National AIDS Trust published our Unheard Voices report which explored attempts made to meaningfully involve Black communities in commissioning services in London. It gave us the opportunity to hear about the innovative approaches to community involvement already happening – like engaging with community leaders and investing in projects where Black people living with HIV are steering the direction. More importantly, it exposed some of the barriers and gaps that prevent coproduction with Black communities, from language barriers to the need for adequate compensation and training. The recommendations themselves were developed in workshops with Black people living with HIV and organisations that represent them, because marginalised voices are needed in policy work just as much as they are in commissioning spheres.
Co-chair for the All Party Parliamentary Group for HIV, AIDS and Sexual Health, and MP for Vauxhall, Florence Eshalomi MP puts it best in her foreword to the report:
‘To ensure equitable access to HIV prevention, treatment and care, we must ensure that communities are at the forefront of the HIV response. Meaningful involvement fosters trust and partnerships between local authorities and Black communities. […] At this pivotal point in the fight to end HIV transmissions, it is imperative that our strategies are responsive to the needs of underserved communities, which may be neglected by more general interventions.’
Black voices are often sidelined in the UK including when receiving healthcare. Unheard Voices is a project developed out of the need to recognise that Black people living with HIV are experts in this fight against health disparities in HIV. At National AIDS Trust, Reclaiming the Narrative means giving Black people living with HIV consistent opportunities to shape the services that are meant to reach them. Also these opportunities have to be accessible and come with adequate reimbursement if we want to truly achieve culturally competent services, campaigns and research. Narratives, lived experience and community voices should always be at the centre of HIV advocacy, policy and research – especially for marginalised voices. To end new HIV transmissions by 2030 and ensure the best quality of life for people living with HIV, the need to put resources towards challenging the health disparities faced by Black communities is only growing.
National AIDS Trust will continue to platform the voices of Black people living with HIV in the work we do until we see change and leave health inequalities in the past.