South Asian Heritage Month

Guest Blog from Urjaa Chudasama

The Unseen Epidemic: Why South Asian Communities Remain Invisible in the UK's HIV Response

Introduction

HIV in the United Kingdom has, for decades, been narrated through dominant epidemiological lenses that carry real weight but leave little room for the South Asian person living with, or at risk of, HIV. This is not because South Asians are absent from the epidemic. It is because the conditions that produce visibility, robust ethnic-specific data, community advocacy infrastructure, and public representation, are each weaker or entirely missing for this population. The result is a form of structural invisibility that compounds, rather than simply coincides with, cultural silence. Crucially, this is not a story about South Asian communities carrying the highest burden of HIV. It is a story about a community whose actual burden, whatever its true scale, cannot currently be seen, measured or responded to with any confidence.

A gap in the data

The starting problem is evidential. Weston's (2003) study of South Asian sexual health service provision in London opens by noting that ethnic monitoring of health data, though standard practice in the United States, had only recently become available in the UK, leaving Global majority communities under-represented in the evidence base used to plan services (Weston, 2003). Two decades on, the pattern persists in a more specific form. UKHSA's most recent regional data for the Southeast records the lowest HIV prevalence rate among Asian residents of any ethnic group tracked, at 0.8 per 1,000 population (UKHSA, 2023).

This figure deserves scrutiny rather than reassurance. A low recorded rate can mean genuinely low incidence. It can equally mean under-testing, under-disclosure, or a population whose risk is systematically missed by the categories used to record it. UKHSA's own reporting practice makes this second explanation plausible: detailed ethnic breakdowns for late diagnosis and diagnosed prevalence are provided only for the largest ethnic categories, with smaller groups withheld from specific figures once case numbers fall below a reporting threshold (UKHSA, 2023). South Asian residents are frequently among the groups too small to appear in these more granular tables. The consequence is a data architecture that cannot currently distinguish "low prevalence" from "low visibility." Given what Weston and others describe about barriers to testing and disclosure within South Asian communities, treating the recorded 0.8 per 1,000 figure as the full picture risks a serious planning error: the assumption that a population with no urgent need is being met by a system that, in practice, may simply not be seeing it. Better ethnic-specific data collection, granular enough to report on South Asian residents distinctly rather than folding them into broader or unreported categories, is therefore not a minor technical fix. It is the precondition for any credible assessment of need.

Honour, shame and the architecture of silence

Where the NHS data go quiet, Weston's ethnographic account of Naz Project London begins to explain why. Weston argues that South Asian communities in London operate within a durable framework of honour (izzat) and shame (sharam) that functions as a mechanism of social control, one with direct consequences for how HIV is discussed, tested for, and disclosed (Weston, 2003). Three effects follow from this framework. First, sexual matters generally become taboo subjects, making conversations about transmission and risk difficult even within families. Second, a sharp separation opens up between identity and behaviour, so that a person may engage in behaviour that carries HIV risk while never adopting or disclosing an identity, such as gay or bisexual, that would name that risk publicly. Third, shame acquires a spatial dimension: because reputation is monitored within tightly bounded community geographies, individuals often feel compelled to seek testing, treatment or support at a distance from where they live, rather than risk recognition (Weston, 2003).

This is a materially different mechanism from stigma as generally theorised in HIV policy. It is not only that South Asian communities in the UK face health inequity, which they do, but that they face it without some of the internal community structures that have historically absorbed and metabolised HIV-related shame for other affected populations. Weston's account of Naz Project's ethnically specific model is instructive here precisely because it was built as compensation for that absence: an agency staffed by people who share clients' language and cultural background, offering a form of trust that generic services could not replicate (Weston, 2003).

The compounded silence of South Asian queer experience

Dan Singh's account of facilitating South Asian HangOuts adds a layer that epidemiological reporting cannot capture: the near-total absence of visible South Asian gay, bisexual and trans role models living with HIV. Singh describes this absence as producing internalised fear that calcifies into long-term shame, reinforced by a "village mentality" in which an individual's HIV status, sexuality or gender identity is understood as a risk to the reputation of the entire family, not merely the self (LGBT HERO, n.d.). He recalls the additional burden, for his generation, of growing up amid a public narrative that treated HIV as belonging to other communities entirely, a framing that made it harder still to ask basic questions or seek testing without feeling doubly excluded, from mainstream campaigning and from his own community (LGBT HERO, n.d.). Even now, he notes persistent scepticism among South Asian gay and bisexual men towards PrEP and regular testing, despite both being free and clinically established as highly effective (LGBT HERO, n.d.).

What Singh's account demonstrates, and what a purely quantitative reading of the epidemic cannot, is that representation itself is a determinant of health-seeking behaviour. The absence of South Asian faces in HIV campaigns is not a neutral gap. It actively signals to South Asian people that this is not their health issue, reinforcing exactly the disclosure barriers that Weston identifies at the structural level, and further undermining the reliability of the very data meant to establish need.

What works: lessons from cross-border migration programming

If the domestic picture is largely one of silence and data gaps, international work targeting South Asian migrant populations offers a useful counterpoint. The EMPHASIS programme, evaluated by Samuels, Canelas and colleagues, reached over 350,000 migrant workers across labour corridors linking Bangladesh and Nepal to India, and produced measurable gains: increases of 27 to 36 percentage points in correct identification of HIV transmission routes, alongside substantial rises in HIV-related communication between migrants and their spouses, ranging from roughly 27 to 30 percentage points depending on the community (SOAS, 2026). Condom use also rose measurably, with the probability of never using a condom falling by around a third among Bangladeshi migrants (SOAS, 2026).

The mechanism behind these gains is directly relevant to the UK context. EMPHASIS worked because it was peer-led, using educators who shared migrants' language and background, and because it built cross-border referral systems that allowed continuity of care as people moved (SOAS, 2026). It also deliberately targeted women, recognising that gendered power imbalances around sexual negotiation, disclosure and financial dependency shape HIV risk independently of general community attitudes (SOAS, 2026). Naz Project's model, described by Weston two decades earlier, rested on the same insight applied to a UK setting: that trust, and therefore disclosure and uptake, follows shared identity between provider and service user, not simply proximity or availability of a generic service (Weston, 2003).

Why South Asian communities lack comparable pillars of strength

Taken together, these sources point to a specific and somewhat counter-intuitive conclusion. South Asian communities affected by HIV in the UK face a form of exclusion that is not about scale of burden but about the absence of infrastructure that elsewhere follows from visible, acknowledged need. Other communities disproportionately affected by HIV have built decades of dedicated activist infrastructure, visible public figures, and community-specific services, in large part because their exposure to the epidemic was, at various points, undeniable and publicly documented. South Asian communities have not had the same forcing function, not because the need is absent, but because the same honour-based social control that discourages public disclosure also suppresses the community mobilisation, and the data, that would normally establish and evidence that need. The small scale of ethnically specific services that do exist, such as Naz Project's South Asia-specific groups or LGBT HERO's peer facilitation work, reflects an emerging rather than an established infrastructure (Weston, 2003; LGBT HERO, n.d.). The paradox is that the cultural mechanism producing under-diagnosis and under-reporting also actively suppresses the community mobilisation that would normally correct it.

Conclusion and an agenda for action

Weston closed her 2003 study by calling for further research into Global Majority sexual health provision generally, noting the limited literature available on the social and cultural practices shaping ethnic health inequalities (Weston, 2003). More than twenty years later, the underlying gap Weston identified persists in the data itself: NHS and UKHSA regional reporting does not provide detailed breakdowns for smaller ethnic groups on grounds of small sample size, which has the practical effect of erasing South Asian experience from the picture used to plan services (UKHSA, 2023). Meanwhile, the two pieces of practice-based evidence available, Weston's account of Naz Project and the EMPHASIS evaluation, point in the same direction: culturally specific, peer-led, gender-attentive services measurably work where generic provision does not reach.

The action agenda that follows is not complicated to state, even if it is hard to deliver. NHS ethnic monitoring in sexual health data needs to be granular enough to report on South Asian residents distinctly, rather than folding them into broader categories or unable to provide their figures for being too small to meet a reporting threshold; without this, the current low recorded prevalence cannot be trusted as evidence of low need. Testing and prevention services need to be delivered, or at minimum signposted, through people who share language, background and lived experience, following the Naz Project and EMPHASIS models rather than assuming generic provision is neutral. Additionally, representation matters as an intervention in its own right: the presence of South Asian people, including South Asian queer people, living openly and well with HIV does the preventive work that no leaflet can, because it directly answers the question Singh identifies as the community's deepest barrier, namely whether this health issue, and this care, is meant for people like them.

Bibliography

LGBT HERO (n.d.) Conversations about HIV and being South Asian. Available at: https://www.lgbthero.org.uk/sa-conversations-about-hiv-and-being-south-asian (Accessed: 8 July 2026).

SOAS (2026) Mobility without protection: cross-border migration and HIV risks in South Asia. Available at: https://www.soas.ac.uk/about/blogs/mobility-without-protection-cross-border-migration-and-hiv-risks-south-asia (Accessed: 8 July 2026).

UK Health Security Agency (2023) HIV in the South East: annual epidemiological spotlight on HIV, 2022 data. Available at: https://www.gov.uk/government/publications/hiv-south-east-annual-data-spotlight/annual-epidemiological-spotlight-on-hiv-in-the-south-east-2022-data (Accessed: 8 July 2026).

Weston, H.J. (2003) 'Public honour, private shame and HIV: issues affecting sexual health service delivery in London's South Asian communities', Health & Place, 9(2), pp.109–117. doi: 10.1016/S1353-8292(03)00002-9.