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As of this Black History Month, 2030 is 38 months away. Yet we are still at a point where inequalities in HIV testing and health outcomes for people living with HIV persist. Black communities continue to be overrepresented in HIV data, despite Black African communities making up just 2.5% of the population of England and Wales.
In our recent report, Beyond the Action Plan, we recognise that health behaviours are not solely determined by access to clinics or the availability of treatment, outreach or innovative technology. There needs to be greater emphasis on the role of person-centred care, trust and rapport. A person’s relationship to healthcare is shaped by their background – their gender, sex, age, ethnicity and religion – as well as their past experiences.
Medical mistrust is prominent throughout many Global Majority communities, with 45% of BAME patients reporting that they do not trust their primary care provider. Even our own report on the experiences of Black people living with HIV in primary care highlighted that 1 in 8 respondents had experienced discrimination based on race, ethnicity or religion. Medical mistrust does not develop out of nowhere. It is rooted in the many negative lived experiences of discrimination, bias and feeling as though your concerns are not taken seriously. These experiences reinforce the narrative that healthcare is not a safe space for everyone, even though we expect people to be vulnerable and have faith that they will receive the best care.
When bias based on ethnicity can shape health outcomes and patient experiences, receiving the best quality care can feel like a lottery. When people anticipate having their pain and symptoms overlooked, this does not motivate them to return. Not all bias and discrimination presents as malicious or poorly intentioned. Sometimes, healthcare staff may make assumptions or ask inappropriate questions without recognising the impact this can have on a patient. The problem is that, regardless of intent, these experiences can undermine trust and leave people feeling less confident about seeking care in the future.
What does this mean for HIV?
While medical mistrust may not stem from a person’s experience with sexual health or HIV clinics, it can shape their perception of all healthcare professionals. For Black communities who are disproportionately impacted by HIV, this means there will continue to be missed opportunities for Black people to get tested, receive information about HIV and start PrEP.
Medical mistrust is not just a lack of faith in healthcare professionals. It creates scepticism around healthcare systems and treatment more broadly. Research has shown that concerns about the trustworthiness of PrEP and a lack of diverse representation in pharmaceutical trials can fuel hesitancy around PrEP initiation amongst Black communities.
Without diverse representation in these trials, Black communities can feel as though their experiences and risk profiles are not reflected. This caution around PrEP is to be expected. Healthcare should be a space where the concerns and opinions of patients are recognised, validated and taken seriously. The HIV voluntary sector, especially Black-led organisations, often works tirelessly to fill in the gaps and provide the tailored information Black communities need around PrEP and testing. However, investment in the HIV voluntary sector must be strengthened if we want to see more Black people starting PrEP.
What is next? What needs to happen?
To rebuild the trust of marginalised communities, there needs to be visible change, both structurally and individually. Healthcare professionals need early and continued interventions that support them to develop cultural competency, cultural humility and person-centred care. Every healthcare professional should have the tools to provide care that reflects the needs and experiences of the people they support, rather than relying on assumptions that can negatively impact the quality of care.
However, rebuilding trust cannot rest on individual healthcare professionals alone. There must also be changes to the systems and policies that shape people’s experiences of healthcare. At a local level, Integrated Care Boards (ICBs) need to understand their communities and commit to plans to reduce health inequalities for key demographics, ideally co-produced with people from their communities. Meaningful change requires investment, accountability and a willingness to listen to the people who are most affected by these inequalities.
As we celebrate the strides made to push back against health inequalities faced by Black communities, it should be a reminder that the UK has the opportunity to make history by ending HIV transmissions by 2030. And if the UK meets this goal, that will be Black History because it would not happen without the hard work of Black researchers, activists, voluntary sector staff, parliamentarians, NHS staff and policy leaders. Their voices, experiences and insight have helped shape the HIV response and are the reason we now have brilliant initiatives and resources tailored to support Black communities.
It would also be Black History because it would mean the UK had made significant progress towards addressing the health inequalities that have existed for far too long. But we cannot achieve this by focusing on HIV testing and treatment alone. We must ensure that Black communities can access the information, prevention, treatment and care they need, in services where they feel heard, respected and safe.