For decades, racially minoritised communities, in particular people of Black African ethnicity, have been disproportionately affected by HIV. Many of the people within these populations experience high levels of social, health and economic inequalities, all of which exacerbate poor sexual health outcomes, including the risk of HIV transmission.

After gay and bisexual men, Black African heterosexual men and women are the most heavily impacted by HIV in the UK, yet we're not seeing progress made in reducing new cases among the former at the same rate among the latter.

All four nations across the UK have made commitments to end new cases of HIV by 2030, with work now underway to produce plans that will set the course for this work. It was therefore timely that the All-Party Parliamentary Group (APPG) on HIV/AIDS announced an inquiry looking at the needs of Black, Asian, and Minority Ethnic Communities in relation to HIV.

On Thursday 1 July we were delighted to provide oral evidence to the APPG with our HIV Prevention England (HPE) Project Manager, Chamut Kifetew, providing insight on the work of the programme and some of the projects it has undertaken to engage racially minoritised communities in HIV testing and wider prevention.

We need progress for all communities impacted by HIV.

Our overarching recommendation to the APPG was that the HIV Action Plan in England and strategies in Scotland and Wales to end new cases of HIV by 2030 must have a specific focus on the needs of racially minoritised communities with HIV prevention and supporting people living with HIV to live happy and healthy lives.

The current statistics underline the urgency of addressing racial inequities in the HIV response. Late diagnoses continue to impact Black African heterosexual men and women, with 50% of all diagnoses among this population in 2019 being diagnosed late, compared to 42% in the general population.

Despite Black African women being the largest group of new cases of HIV among heterosexual women, 15 out of every 100 who attend a sexual health clinic are not offered an HIV test, with one in five declining a test. Fuelling these inequalities are often discrimination, a lack of cultural awareness, and services that do not fully reflect the needs of the communities they serve.

Our submission [PDF] drew on the findings of the HIV Commission report and consulted across teams within our organisation, including local services, the national HPE programme and our Racial Diversity Working Group. The wealth of experience, diverse voices and knowledge helped us produce a submission that reflects the work we're currently doing to support racially minoritised communities in regards to HIV and wider sexual health.

Our other recommendations included:

  • All Government strategies to end new HIV cases by 2030 should have a focus on ensuring people living with HIV can enjoy fulfilling and healthy lives. This must include a recognition of the specific challenges racially minoritised communities living with HIV experience, and action to address these.
  • Public Health England/UK Health Security Agency should produce more granular data linked to HIV, ethnicity, age, gender and migration status, so a greater understanding of intersectional issues impacting racially minoritised communities affected by HIV can be understood.
  • The term ‘BAME’ is no longer fit for purpose; it doesn’t reflect the significant diversity of identity and experiences within a single acronym, and it is not a category our colleagues identify with. There's currently no consensus among racially minoritised communities on what is the appropriate language to use. However, this underlines the immediate need for a larger piece of work to take place across civil society, supported by the Government and in partnership with those communities, to identify solutions.
  • Health Education England, NHS Education Scotland, and Health Education and Improvement Wales should ensure there is regular training and development for all frontline NHS staff involved in HIV testing (including sexual health clinics, A&E, and GP surgeries). This should include measures to address unconscious bias, racism and the importance of inclusive language, as well as focusing on cultural competencies to better support people from racially minoritised communities.
  • There should be increased funding made available to support increased HIV testing in all parts of the UK. This should prioritise opt-out HIV testing in areas with high or very high HIV prevalence, and provide a click-and-collect service for HIV self-test kits.
  • PrEP should be made available in other parts of the NHS across the UK, including pharmacies and GP surgeries. Funding should be made available by governments to support community outreach projects that work with racially minoritised communities to increase awareness of PrEP, in a culturally appropriate way and one that challenges misinformation about PrEP.

Ending new cases of HIV within the decade will require an ambitious plan of action by governments, matched with long-term funding, but it also needs immediate work to dismantle barriers and root out inequalities faced by racially minoritised communities.

Our message to the APPG was clear: we won't end new cases of HIV in the UK until we fully address the issue of race equity. We look forward to the APPG’s final report and thank colleagues from across the charity for their time, insight and support in writing this submission.

Liam Beattie is Public Affairs Officer and Ngozi Kalu is Research Officer at Terrence Higgins Trust.