Tackling HIV stigma and care inequalities

While interventions for HIV are promising, their implementation must coincide with efforts to make HIV-related care equitable and accessible. Superintendent Pharmacist Abbas Kanani explores common barriers to care and the value of community participatory research

The progress made in HIV prevention in England should give us confidence, but not complacency. Provisional figures indicate that new HIV diagnoses fell again in 2025, while treatment outcomes remain extremely strong. Yet the national picture hides important inequalities. Too many people are still diagnosed late, and access to testing and pre-exposure prophylaxis, or PrEP, remains uneven between communities.

From a pharmacist’s perspective, this is an important distinction. We now have highly effective ways to prevent HIV transmission and to treat people living with HIV. The challenge is increasingly about access, awareness, trust and whether prevention reaches people early enough. A successful HIV strategy therefore cannot be measured simply by whether interventions exist. It has to consider who is actually able and willing to use them.

Disparities in access and uptake of HIV testing

The World Health Organisation (WHO) estimates that in 2025, 32.1 million people were on HIV treatment. Overall, 78% of the approximately 41.0 million individuals living with HIV worldwide in 2025 were receiving antiretroviral therapy (ART). Testing remains one of the foundations of prevention. Earlier diagnosis allows people to start effective treatment sooner, protecting their own health and preventing onward sexual transmission once viral suppression is achieved. However, around two in five people diagnosed with HIV in England in 2024 received a late diagnosis. Late diagnosis is particularly prominent in some Black African communities. That tells us that a universal offer does not necessarily produce equal outcomes.

The same principle applies to PrEP. Uptake has increased considerably, but it is not reaching every population with potential need equally. Prevention services need to be designed around the people least likely to access them, rather than around those who already know how to navigate the system. That may mean normalising conversations about HIV in a wider range of healthcare settings, increasing opportunities for testing and improving awareness of PrEP among groups in which uptake remains low.

Reducing stigma and the role of community participatory research

Pharmacists can contribute to this wider prevention effort because we are often one of the most accessible points of contact in healthcare. People speak to pharmacists about sexual health, contraception, medicines and symptoms without necessarily seeing themselves as patients with an illness. That accessibility creates opportunities for education, reducing stigma and signposting people towards appropriate testing, prevention and specialist care. It does not replace specialist HIV services, but it can help create more routes into them.

Stigma remains a particularly important barrier. HIV has changed dramatically as a medical condition, but public understanding has not always kept pace. Someone diagnosed promptly and treated effectively can expect highly effective disease control, and a person who maintains an undetectable viral load does not sexually transmit HIV. Yet fear of judgement can still discourage people from testing or discussing their risk. Prevention therefore depends as much on communication and trust as it does on medicine.

This is also why community participatory research deserves greater attention. Mathematical modelling can help policymakers estimate transmission patterns, compare interventions and decide where resources may have the greatest impact. But a model is only as useful as the assumptions and information that shape it. Communities affected by HIV can provide context that routine datasets may struggle to capture, including why people avoid testing, where stigma occurs, how services are perceived and which practical barriers influence whether an intervention is used.

Meaningful participation should go further than asking communities to comment on research after the important decisions have already been made. People with lived experience, community organisations, clinicians, researchers and other stakeholders can help define the questions, challenge assumptions and interpret what a model means in the real world. This can make modelling more relevant to the populations it is intended to serve and can highlight unintended consequences that might otherwise be missed.

Reaching the 2030 targets for HIV

England’s ambition to end new HIV transmissions by 2030 is challenging, but the tools available today make it conceivable. The next phase requires precision. We need to identify where prevention is working, where people are being missed and why those gaps persist. That means combining effective treatment, PrEP, testing and education with better use of data and genuine community involvement.

The goal should not simply be to provide more HIV prevention. It should be to make prevention easier to access, easier to understand and more trusted by the people who need it most. If progress is not shared equally, the job is not finished.