Research and analysis

HIV Action Plan monitoring and evaluation framework 2023 report

Updated 28 November 2024

Applies to England

Report summarising progress from 2019 to 2022.

Foreword

Two years ago, the HIV Action Plan was published, as part of the government’s bold commitment to end HIV transmissions, HIV, AIDS and HIV-related and preventable deaths by 2030 in England, in line with the UNAIDS objective. The goals to be met by 2025 were ambitious: to reduce new HIV diagnoses first made in England by 80%, and to reduce AIDS-defining conditions at diagnosis and HIV-related deaths by 50% from a 2019 baseline. These ambitions were made even more challenging by the impact of the COVID-19 pandemic.

We continue to celebrate the progress made to date with under 4,500 people living with undiagnosed HIV infection and extremely high levels of antiretroviral therapy coverage and viral suppression. In 2022, England once again achieved the UNAIDS 95-95-95 target nationally, with 95% of people living with HIV being diagnosed, 98% of those diagnosed being on treatment and 98% of those on treatment having an undetectable viral load.

HIV treatment and care remain world class in England and most beneficial outcomes remain high across all population groups. Prevention efforts to date have been incredibly successful in reducing HIV transmission, particularly in gay, bisexual and other men who have sex with men (GBMSM), one of the population groups disproportionately impacted by HIV. A new research project, to be commissioned through National Institute for Health and Care Research (NIHR), will evaluate the expansion of the successful programme of HIV opt-out testing in emergency department (ED) settings to an additional 46 sites in areas of high diagnosed HIV prevalence. This research project will be similar to the ED opt-out bloodborne virus (BBV) testing programme in extremely high prevalence areas that the UKHSA reported on recently. This new project will encourage all agencies and health bodies to do everything we can to end HIV transmission in England.

This 2023 monitoring and evaluation framework report tracks the progress towards the HIV Action Plan ambitions and focusses on inequalities in relation to gender and ethnicity. Once people are engaged with HIV services, the services deliver treatment and care in an equitable manner with similar proportions of people receiving antiretrovirals and people virally suppressed. However, we report evidence of inequalities in those accessing prevention services such as pre-exposure prophylaxis (PrEP) and HIV testing uptake, particularly among women, heterosexual individuals and ethnic minority populations.

It is critical that we strengthen our priorities for HIV prevention to ensure everyone is equally reached by our efforts: scaling up HIV testing, expanding access to HIV PrEP, linking and maintaining patients in high quality HIV care, and tackling HIV stigma. I am proud of the progress we have achieved in collaboration with our key system partners and look forward to continuing our work together to end HIV transmission within England by 2030.

Professor Susan Hopkins
Chief Medical Advisor at the UK Health Security Agency (UKHSA)

Indicators at a glance

This 2023 report of the HIV Action Plan monitoring and evaluation framework measures progress towards achieving England’s long-term commitment to end HIV transmission in England by 2030. It specifically focuses on the interim ambitions of England’s HIV Action Plan 2022 to 2025 to reduce HIV diagnoses first made in England (by 80%), AIDS-defining conditions diagnosed within 90 days of HIV diagnosis (by 50%) and HIV-related deaths (by 50%) between 2019 and 2025. This report provides a public health commentary around progress towards these interim ambitions, for which the corresponding indicators are presented in Table 1 (with definitions in 2023 report appendix 1).

Table 1. Summary table of progress towards interim ambitions in 2025

HIV Action Plan indicators	2019 baseline	2020	2021	2022	Percentage change (2019 to 2022)
Number of new HIV diagnoses first made in England	2,819	2,271	2,313	2,444	-13%
Number of people diagnosed with an AIDS-defining condition within 3 months of HIV diagnosis	210	168	178	155	-26%
Estimated number of HIV-related deaths	171	222	220	181	6%
UNAIDS 95-95-95 targets	94%-98%-97%	95%-99%-97%	95%-98%-98%	95%-98%-98%	Percentage point change of +1%, 0% and +1% respectively

This report also provides an overview of progress in relation to 5 main HIV themes:

1. Maintain people’s negative HIV status.
2. Reduce the number of people living with HIV who are undiagnosed.
3. Reduce the number of people with transmissible levels of virus.
4. Manage and prevent co-morbidities and HIV-related conditions.
5. Improve quality of life and reduce HIV stigma.

The progress for the main indicators in each theme is presented in Table 2. 

This 2023 report of the HIV Action Plan monitoring and evaluation framework particularly focuses on breakdowns by ethnicity and region of residence for specific populations.

Table 2. Summary of 5 HIV themes and selected indicators

Theme 1: maintain people’s negative HIV status	2019	2020	2021	2022
Number of people attending sexual health services (SHSs) due to partner notification	1,564	855	826	845
Number of people attending through partner notification who tested	1,403	706	624	663
Ratio of partner notification contacts tested to new HIV diagnoses at all SHSs – a ratio of one suggests each HIV diagnosis results in at least one partner having a test	0.9	0.7	0.58	0.66
Proportion of all HIV negative individuals accessing specialist SHSs categorised as having an HIV PrEP need	Not available	Not available	7%	10%
Proportion of all HIV negative individuals with estimated PrEP need who had this need identified	Not available	Not available	79%	83%
Proportion of all HIV negative individuals with estimated PrEP need who started or continued PrEP	Not available	Not available	70%	71%

Theme 2: reduce the number of people living with HIV who are undiagnosed	2019	2020	2021	2022
Estimated number of people living with undiagnosed HIV	5,800 (95% credible interval (CrI) 4,400 to 8,200)	5,200 (95% CrI 4,100 to 7,400)	5,000 (95% CrI 3,900 to 6,800)	4,500 (95% CrI 3,500 to 6,200)
Estimated number of people living with HIV (diagnosed and undiagnosed)	96,400 (95% CrI 94,800 to 98,900)	98,000 (95% CrI 96,500 to 100,300)	96,500 (95% CrI 95,200 to 98,500)	99,000 (95% CrI 97,700 to 100,900)
Number of people HIV tested in all SHSs	1,325,983	927,241	1,048,551	1,155,551
Number of people HIV tested in specialist SHSs	1,005,241	468,019	480,273	555,118
Number of eligible people offered a test in specialist SHSs	1,302,194	638,152	651,561	744,180
Number of people declining a test in specialist SHSs	296,953	170,133	171,288	189,062
Number of GBMSM who had tested for HIV at least once in the calendar year prior their most recent HIV test in specialist SHSs	27,897	18,645	19,819	25,570
Late diagnosis in those first diagnosed in England	842	682	812	865
Number of tests in EDs in higher HIV prevalence areas [note 1]	105,082	97,669	112,752	430,610 (April 2022 to March 2023)
Number of reactive tests (rates) in EDs in higher HIV prevalence areas [note 1] [note 2]	1,160 (1.1%)	1,122 (1.1%)	1,334 (1.2%)	3,791 (0.9%) (April 2022 to March 2023)

[note 1] This data is from 14 EDs who are participating in sentinel surveillance of bloodborne viruses (SSBBV) and in April 2022, joined the ED opt-out testing programme, which is reflected in test numbers. Data for calendar years 2019 to 2021 is provisional from SSBBV which may underestimate testing assigned to ED settings and for April 2022 to March 2023, from the NHS England (NHSE) opt-out testing dashboard.

[note 2] Number of reactive tests does not equate to number of new diagnoses. A person may be tested more than once, a reactive test requires a confirmatory test and this data does not take into account people previously diagnosed.

Theme 3: reduce the number of people with transmissible levels of virus	2019	2020	2021	2022
Estimated number of adults living with transmissible levels of virus in England (lower- to upper-level estimates)	13,308 to 26,137	15,482 to 27,674	14,823 to 25,690	14,934 to 24,918
Number (and proportion) of adults linked to care within 2 weeks of HIV diagnosis	1,858 (70%)	1,542 (73%)	1,646 (75%)	1,748 (76%)
Number (and proportion) of people starting treatment within 3 months of diagnosis	2,138 (76%)	1,673 (74%)	1,742 (75%)	1,816 (74%)
Number (and proportion of people treated who are not virally suppressed (viral load over 200 copies per millilitre (mL))	2,096 (2.3%)	1,904 (2.1%)	1,801 (2.0%)	1,997 (2.1%)
Number (and proportion) of people not attending care for at least 15 months (‘not retained in HIV care’)	4,669 (6%)	6,819 (8%)	6,392 (7%)	6,390 (7%)

Theme 4: manage and prevent co-morbidities and HIV-related conditions
Under development

Theme 5: improve quality of life and reduce HIV stigma	StigmaSurvey UK (2015)	Positive Voices survey (2017)	Positive Voices survey (2022)
Life satisfaction – people gave a score between 1 and 10 to the question: overall, how satisfied are you with your life nowadays?	Not available	7.4	7.3
Enacted stigma – people living with HIV ever felt that they were ever not treated well in a healthcare setting	26% [note 3]	19% [note 3]	16%
Anticipated stigma – people reported ever avoiding going to healthcare services when they needed to go	24% [note 4]	18% [note 4]	15%
Sharing one’s HIV status outside of healthcare settings – people living with HIV who did not share their HIV status with anyone outside of healthcare settings	15%	13%	10%

[note 3] Respondents were asked if they had been treated differently to other patients, which is different to Positive Voices 2022, where respondents were asked if they felt they were not treated well in a healthcare setting.

[note 4] Respondents were asked if they avoided seeking healthcare when they needed it, which is slightly different to Positive Voices 2022, where respondents were asked if they avoided going to healthcare services when they needed to go.

Main messages

Progress towards the HIV Action Plan ambitions

While new HIV diagnoses first made in England decreased overall from 2,819 in 2019 to 2,444 in 2022, there was a rise in diagnoses from 2,313 in 2021 to 2,444 in 2022 and differences in diagnoses exist between demographic groups. 

Among gay, bisexual and other men who have sex with men (GBMSM) first diagnosed in England, there was a 42% fall in new diagnoses from 1,239 in 2019 to 724 in 2022. However, since 2020, the number of new diagnoses remained stable at 738 in 2020, 784 in 2021 and 724 in 2022. In 2022, twice as many GBMSM were diagnosed outside of London compared to the capital. The plateauing in the number of new diagnoses for GBMSM and the associated high and sustained number of GBMSM having an HIV test in 2022 suggest HIV incidence might be plateauing in this population. This plateauing in HIV incidence was also seen in estimates of incidence in GBMSM from a CD4 back-calculation model.

The fall in new diagnoses first made in England was most apparent in white GBMSM, with a 49% decrease from 822 in 2019 to 420 in 2022. This compares to a 27% fall in diagnoses among GBMSM of other ethnicities, from 417 in 2019 to 304 in 2022. In 2022, 42% (304 of 724) of diagnoses in GBMSM were among ethnic minority groups compared to 34% (417 of 1,239) in 2019.

Among men exposed through sex with women, diagnoses first made in England fell by 25%, from 546 in 2019 to 411 in 2022. For women exposed through sex with men, new diagnoses reduced by 24% from 589 in 2019 to 447 in 2021, and subsequently rose by 26% to 564 in 2022. Of the women first diagnosed in England in 2022, 79% (444 of 564) were born abroad and 24% (138 of 564) arrived in England in 2022. Together this information, combined with the rise in number of people previously diagnosed abroad with HIV in 2022, suggests that the rise was partially due to infections acquired abroad. However, the lower HIV testing levels in women also suggests HIV transmission continued within England.

Among people exposed by sex between men and women, the number and proportion of people newly diagnosed in England who were of white ethnicity fell by 39% (458 in 2019 to 281 in 2022). In contrast, over the same period, the number of diagnoses fell by 6% (396 to 374) among people of black African ethnicity. Diagnoses rose slightly among people of Asian and mixed or other ethnicities.

The number of people diagnosed with an AIDS-defining condition within 3 months of HIV diagnosis showed a sustained decrease between 2019 and 2022 from 210 to 155 (-26%). If we were to meet the HIV Action Plan ambition of fewer than 110 in 2025, we would need to reduce the number of people diagnosed with an AIDS-defining condition within 3 months of an HIV diagnosis by 17 people each year from 2023 onwards.

Deaths occurring in people with HIV fell by 18% from 732 in 2021 to 603 in 2022. If we estimate that 30% of all deaths in 2022 in people living with HIV were HIV related, this equates to 181 deaths, 10 more deaths than the 171 estimated in 2019. If the target of fewer than 86 HIV-related deaths in 2025 is to be met, the number of deaths would need to reduce by 32 each year from 2023 onwards. Work to better estimate HIV-related deaths at population level in England is underway and preliminary estimates of HIV-related mortality using the 569 deaths reported for 2022 through the National HIV Mortality Review (NHMR) (out of a total of 603 deaths through NHMR and other reporting schemes) show that 13% (73 of 569) of deaths were HIV related and 7% (38 of 569) possibly HIV related. 

In 2022, England met the UNAIDS 2025 95-95-95 targets for the third time with 95% of all people with HIV being diagnosed, 98% of those diagnosed on treatment and 98% of those on treatment being virally suppressed and unable to pass on the virus.

Find out more about progress towards HIV Action Plan ambitions in full detail below.

Theme 1: maintain people’s negative HIV status

Partner notification, HIV pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) help maintain the negative HIV status of people who are HIV negative (alongside HIV testing, which is detailed in Theme 2: reduce the number of people living with HIV who are undiagnosed).

Between 2019 and 2022, the number of people attending specialist sexual health services (SHSs) due to HIV partner notification decreased from 1,564 to 845. The ratio of number of new HIV diagnoses in SHS settings to number of attendees due to HIV partner notification was 1.01 in 2019 and 0.85 in 2022 nationally. This means for every 100 HIV diagnoses in 2022, 85 people subsequently attended SHSs because of HIV partner notification. Partner notification remains an extremely effective way to reduce the number of people living with undiagnosed HIV, so the reduction in the number of people attending due to partner notification has likely led to missed opportunities for HIV diagnosis.

In 2022, 9.7% (121,547 of 1,249,511) of HIV-negative people accessing specialist SHSs in England were defined as having HIV PrEP need, of whom, 71% (86,324) initiated or continued PrEP. However, substantial variation exists in relation to need and uptake by population group. Need and uptake were consistently higher among GBMSM compared to heterosexual individuals, and higher among people living in London compared to outside London. Unlike GBMSM, whose uptake corresponded to their need across all ethnicities, uptake is lowest among heterosexual individuals with the highest need, among black African and Asian ethnicities.

In 2022, 8,421 people received PEP for HIV, a 3% rise compared with 2021 (8,160) but a 33% decrease compared with 2019 (12,038). GBMSM constituted 59% (4,966 of 8,421) of all those receiving PEP.

Find out more about Theme 1 in full detail below.

Theme 2: reduce the number of people living with HIV who are undiagnosed

Reducing the number of people living with undiagnosed HIV through HIV testing provides access to life-saving treatment. It also enables people receiving treatment to attain undetectable levels of virus so that HIV cannot be passed on to others. Of the estimated 99,000 (95% credible interval (CrI) 97,700 to 100,900) people living with HIV in England in 2022, an estimated 4,500 (95% CrI 3,500 to 6,200) were undiagnosed, compared with 5,000 (95% CrI 3,900 to 6,800) in 2021 and 5,800 (95% CrI 4,400 to 8,200) in 2019. In 2022, the estimated number of people living with undiagnosed HIV in London was 1,400 (95% CrI 1,100 to 2,000), less than half of the 3,100 (95% CrI 2,300 to 4,500) living elsewhere in England.

In 2022, across all SHSs, 1,155,551 people were tested for HIV, a 10% increase compared to 2021 (1,048,551), and a 13% reduction compared to 2019 (1,325,983). However, the number of GBMSM testing increased by 7% since 2021, from 180,236 to 192,503 in 2022, the highest number ever tested. Among heterosexual men, and heterosexual and bisexual women, a 33% (420,645 to 280,767) and 19% (630,746 to 512,108) reduction in numbers testing was seen respectively, from 2019 to 2022.

In 2022, 35% (407,235 of 1,151,415) of eligible attendees at specialist SHSs were not offered a test, 16% (189,062 of 1,151,415) declined a test and 48% (555,118 of 1,151,415) tested for HIV. A higher proportion of eligible heterosexual and bisexual women were not offered a test (40%, 213,061 of 535,645) and declined a test (22%, 118,335 of 535,645) with only 38% (204,249 of 535,545) testing for HIV compared to heterosexual men (27%, 12% and 61%) or GBMSM (23%, 3% and 74%). While black African heterosexual individuals were slightly more likely to be offered and accept an HIV test compared to heterosexual individuals of other ethnicities, uptake was consistently worse among women. Furthermore, the higher proportion positive among black African heterosexual individuals means the potential to have missed diagnostic opportunities is much greater in this group.

As part of the HIV Action Plan, NHSE expanded opt-out testing in EDs in the 21 local authority areas across the country with the highest diagnosed HIV prevalence. Data relating to April 2022 to March 2023 from 14 EDs who are participating in SSBBV showed a substantial rise in the number of HIV tests, 112,752 in 2021 to 433,610 in the first 12 months of the programme. The reactive test rates decreased from 1.2% to 0.9% (includes those with a previously known HIV diagnosis). In a deep dive of 5 sites, HIV test positivity was 0.9% (including those with known positive HIV status) and 0.07% among those newly diagnosed.

Find out more about Theme 2 in full detail below.

Theme 3: reduce the number of people with transmissible levels of virus

Among people diagnosed with HIV, rapid linkage to care and treatment, and subsequent retention in care (and re-engagement in care when people have not been attending HIV care at least annually) will reduce the number of people living with a detectable viral load, thereby maintaining good health and reducing onward transmission.

In 2022, a lower-level estimate of 14,934 people living with HIV had transmissible levels of virus. This is equivalent to 15% of the estimated 99,000 (95% CrI 97,700 to 100,900) people living with HIV and comprises:

• an estimated 4,500 (95% CrI 3,500 to 6,200) (30%) people living with undiagnosed HIV
• 382 (3%) diagnosed in 2022 but not linked to care in the same year
• 6,390 (43%) not retained in HIV care (not seen in care for at least 15 months since last HIV care appointment between October 2020 and September 2021)
• 1,665 (11%) attended HIV care in 2022 but were not receiving treatment
• 1,997 (13%) were on treatment in 2022 but were not virally suppressed (viral load below or equal to 200 copies per millilitre (mL))

A higher-level estimate for the number of people living with transmissible levels could reach 24,918 in 2022 when including:

• an additional 147 people who were seen for HIV care in 2022 but had no information about their HIV treatment status
• 1,834 people who were on HIV treatment in 2022 but had no evidence of viral suppression (95% of whom had missing viral load data for 2 consecutive years)
• 8,003 people seen at least once between January 2016 and September 2020 and not seen again by end of 2022

Find out more about Theme 3 in full detail below.

Theme 4: manage and prevent co-morbidities and HIV-related conditions

Delivering high-quality care in line with national standards and guidelines will improve quality of life, and reduce morbidity, AIDS-defining condition at diagnosis and HIV-related mortality. Future work with stakeholders and the HIV community will develop indicators that can be generated using where possible existing sources of data, including patient-reported experience measures (PREMs), Positive Voices (a representative survey of people living with HIV in the UK) and UKHSA’s surveillance systems. These may include hepatitis co-infection, HIV-related and other co-morbidities, general practice (GP) engagement and satisfaction with services.

Find out more about Theme 4 in full detail below.

Theme 5: improve quality of life and reduce HIV stigma

The UNAIDS 2025 targets set an ambition for stigma to be experienced by less than 10% of people living with HIV by 2025. Data from the Positive Voices 2022 survey (to be published soon) indicates some improvement across a range of stigma indicators compared to Positive Voices 2017 and the 2015 Stigma Index UK survey. However, data from the Positive Voices 2022 survey shows that levels remain too high with 10% of people living with HIV not sharing their HIV status with anyone outside of healthcare settings, 16% reporting ever feeling that they were not treated well in a healthcare setting and 31% ever worried that they would be treated differently to other patients by healthcare staff due to their HIV status.

Find out more about Theme 5 in full detail below.

Background

On 1 December 2021, England’s government published an HIV Action Plan, an initiative that sets out the activities that need to be undertaken to meet England’s long-term commitment to end HIV transmission by 2030. New HIV diagnoses first made in England have been decreasing since 2015, particularly in GBMSM, due to high and sustained levels of HIV testing (including frequent repeat testing), the availability and effectiveness of PrEP, the effectiveness of treatment as prevention (TasP) and excellent care provision by the NHS. In addition, since 2020, England has met the UNAIDS 2025 targets of 95% of all people with HIV being diagnosed, 95% of those diagnosed on treatment and 95% of those on treatment being virally suppressed and so unable to pass on the virus.

The interim ambitions of England’s HIV Action Plan 2022 to 2025 aimed to reduce the following between 2019 (baseline data for the HIV Action Plan) and 2025:

• number of people first diagnosed with HIV in England by 80%
• number of people diagnosed with an AIDS-defining condition within 3 months of an HIV diagnosis by 50%
• HIV-related deaths in England by 50%
• HIV-related stigma

This 2023 report of the HIV Action Plan monitoring and evaluation framework measures progress towards achieving these interim ambitions and collates the main HIV indicators at the national level (for definitions of current and provisional indicators see 2023 report appendix 1).

Tracking inequalities is essential to end HIV transmission since the accessibility of healthcare services differs by population, and progress overall may mask broadening inequalities for specific groups. This report also explores inequalities in ethnicity and region of residence by specific population groups. Future reports will provide further stratifications to allow any inequalities between populations and regions to be identified and addressed. 

Most of the data included in this report was included in the official statistics published in October 2023. However, this report interprets this information in relation to the HIV Action Plan, sets out indicators that can be used to identify and address inequalities, and includes additional information such as estimates for the number of people living with HIV (diagnosed and undiagnosed) and new HIV infections.

The baseline data year for the HIV Action Plan was 2019, however, during 2020 and 2021, the COVID-19 pandemic impacted the HIV epidemic in several ways. The pandemic changed patterns of sexual behaviour, HIV testing and access to sexual health and HIV services in 2020 and 2021, with the mpox (monkeypox) outbreak further affecting these patterns in 2022. Among people living with diagnosed HIV, the proportion of consultations that were virtual rose during the primary pandemic response and fewer people had CD4 and viral load counts reported. These changes, combined with challenges in data collection and completeness, and meanwhile, improvements in PrEP data coding, mean that trends between 2019 and 2022 remain difficult to interpret.

For details on the approach taken to develop the HIV Action Plan monitoring and evaluation framework, please see the 2022 report.

Progress towards the HIV Action Plan ambitions

This report presents data between 2019 and 2022, which predates England’s HIV Action Plan (published in 2021) and the monitoring and evaluation framework 2022 report (published in 2022). The HIV Action Plan uses 2019 as the baseline year against which the ambitions are set.

In this report, the figures for the baseline year, 2019, differ from those published in the HIV Action Plan and the monitoring and evaluation framework 2022 report as further HIV clinic reports have been received since and integrated into the HIV database retrospectively. The estimates of population living with HIV (including undiagnosed) were rounded. Adults include all people over 15 years old.

Towards zero new HIV transmissions

New HIV diagnoses first made in England

New HIV diagnoses first made in England fell from 2,819 in 2019 to 2,444 in 2022. However, this masks a dip in 2020 (2,271) and 2021 (2,313) followed by a 6% rise between 2021 and 2022 (to 2,444) (Figure 1 and Table 3). To achieve the 2025 target of 564 new HIV diagnoses by 2025, a decrease of approximately 627 diagnoses first made in England, annually, from 2023 onwards, would need to be achieved.

Table 3. Summary of indicators for progress towards the HIV Action Plan ambitions and UNAIDS targets, England, 2019 to 2022

HIV Action Plan indicators	2019 baseline	2020	2021	2022	Percentage change (2019 to 2022)	2025 ambition	Annual decrease from 2023 to achieve ambition
Number of new HIV diagnoses first made in England	2,819	2,271	2,313	2,444	-13%	564	627
Number of people diagnosed with an AIDS-defining condition within 3 months of HIV diagnosis	210	168	178	155	-26%	105	17
Estimated number of HIV-related deaths (30% of all-cause mortality)	171	222	220	181	+6%	86	32
UNAIDS 95-95-95 targets	94%-98%-97%	95%-99%-97%	95%-98%-98%	95%-98%-98%	Percentage point change of +1%, 0% and +1% respectively	95%-95%-95%	Target reached in 2020

Among GBMSM first diagnosed in England, there was a 42% fall in new diagnoses from 1,239 in 2019 to 724 in 2022. This fall (which first started in 2015) was most apparent between 2019 to 2020. Since 2020, the number of diagnoses has remained relatively stable at 738 in 2020, 784 in 2021 and 724 in 2022. In 2022, the number of diagnoses in GBMSM made outside of London (480) was double that within the capital (244). Among GBMSM living in London, new HIV diagnoses first made in England decreased from 531 in 2019 to 244 in 2022 and among GBMSM living outside London, from 708 in 2019 to 480 in 2022. The high and sustained number of GBMSM having an HIV test suggests transmission is plateauing in this population.

The fall in new diagnoses first made in England in GBMSM was most apparent in white men (49% decrease from 822 in 2019 to 420 in 2022). Between 2019 to 2022, there was a 28% (36 to 26) decrease in new diagnoses among GBMSM of black African ethnicity, 26% (23 to 17) decrease among those of black Caribbean ethnicity, 4% (92 to 88) decrease among those of Asian ethnicity and 39% (145 to 89) decrease among those of mixed or other ethnicity. In 2022, 42% (304 of 724) of diagnoses in GBMSM were among ethnic minority groups compared to 34% (417 of 1,239) in 2019.

Among men exposed through sex with women and living in London, diagnoses first made in England fell from 158 in 2019 to 137 in 2021 but rose to 154 in 2022. Outside London, diagnoses first made in England dropped from 388 in 2019 to 286 in 2021, falling again to 257 in 2022.

Among women exposed through sex with men and living in London, diagnoses first made in England reduced from 177 in 2019 to 147 in 2021 (-17%) subsequently rising to 171 in 2022 (+16%). Outside London, diagnoses fell from 412 in 2019 to 300 in 2021 (27%) and then rose to 393 in 2022 (+31%). Among heterosexual adults, in whom HIV testing has not recovered to pre-COVID-19 pandemic levels, the trends in new diagnoses first made in England between 2019 and 2022 suggest incidence has not fallen in this group. In 2022, 79% (444 of 564) diagnoses first made in England among women were among women born abroad, 24% (138 of 564) of whom arrived in England in 2022. Together this information, combined with the rise in number of people previously diagnosed abroad with HIV in 2022, suggests that the rise was partially due to infections acquired abroad. However, the lower HIV testing levels in women also suggests HIV transmission continued within England.

Among people exposed by sex between men and women, the number and proportion of people newly diagnosed in England who were of white ethnicity fell by 39% (458 in 2019 to 281 in 2022). In contrast, over the same period, the number of diagnoses fell by 6% (396 to 374) among people of black African ethnicity. Diagnoses rose among people of Asian and mixed or other ethnicities.

In 2022, 12 trans, non-binary and people who identify their gender in another way were diagnosed with HIV for the first time in England, compared to 13 in 2019.

New HIV diagnosis rates were estimated using population denominators derived from a multi-parameter evidence synthesis (MPES) model, a complex Bayesian statistical model that combines and triangulates multiple sources of data including census, surveillance and survey-type prevalence data to estimate HIV prevalence (diagnosed and undiagnosed). Although new HIV diagnosis rates (among people first diagnosed in England) decreased across most groups over time (rates in 2022 among black African women and women of other ethnicities were the same as rates in 2019), they remain disproportionately higher among GBMSM and black African heterosexual individuals in comparison to the overall population and heterosexual individuals of other ethnicities (Figure 2).

Figure 1. New HIV diagnoses first made in England, AIDS-defining condition at HIV diagnosis and HIV-related deaths, and corresponding 2025 ambitions, England, 2015 to 2022

Figure 2. New HIV diagnoses rate (per 1,000) among adults first diagnosed in England, by specific population groups, ages 15 to 74, England, 2019 to 2022

Estimating HIV incidence in gay, bisexual and other men who have sex with men

Estimates of HIV incidence (point estimates and 95% credible intervals (CrIs)) among GBMSM were obtained from a CD4 back-calculation model, where observed numbers of HIV diagnoses over time, the distribution of CD4 counts at or soon after diagnosis, and information on disease progression are used to reconstruct the unobserved HIV incidence and probabilities of HIV diagnosis underlying these data.

The incidence of HIV in GBMSM in England is estimated to have declined in the years preceding 2019, from 1,850 (95% CrI 1,740 to 1,960) in 2015 to 970 (95% CrI 830 to 1,140) in 2019 (Figure 3). This decline is followed by a plateau in incidence during the past 3 years, with an estimated 920 (95% CrI 520 to 1,630) new infections acquired among GBMSM in England in 2022 (Figure 3).

Figure 3. Estimated number of new infections using a CD4 back-calculation method, and new observed diagnoses in GBMSM, England, 2015 to 2022

Towards zero AIDS-defining conditions diagnosed at HIV diagnosis

The number of AIDS-defining condition diagnoses within 3 months of HIV diagnosis showed a sustained decrease between 2019 and 2022 from 210 to 155. If we are to meet the HIV Action Plan ambition of fewer than 105 in 2025, we would need to reduce the number of AIDS-defining condition diagnoses within 3 months of an HIV diagnosis by 17 people each year from 2023 onwards.

Towards zero HIV-related deaths

In 2022, there were 603 deaths occurring in people with HIV, an 18% decrease from the 732 deaths in 2021, a 19% decrease from the 741 deaths in 2020 but a 0.1% rise from 571 in 2019. The National HIV Mortality Review (NHMR) has been used to supplement reports of deaths from 2019, contributing to the increase between 2019 and 2022. 

There were 138 and 129 fewer all-cause deaths in 2022 compared with 2020 and 2021, respectively. This decrease is likely due to the higher numbers of COVID-19 related deaths in 2020 and 2021, before vaccination was readily available. Indeed, spikes in mortality in people living with HIV coincided with peak COVID-19 mortality. This suggests excess mortality in 2020 and 2021 was partially due to direct impact of COVID-19 infection, as well as its indirect impact through disruption to healthcare services. However, people living with diagnosed HIV who were on treatment and virally suppressed did not have a higher risk of COVID-19 death compared with the general population prior to the start of the widescale COVID-19 vaccination programme in December 2020. If we estimate that 30% of all deaths in people living with HIV were HIV related in 2022, this equates to 181 deaths. If the target of fewer than 86 HIV-related deaths in 2025 is to be met, the number of deaths would need to reduce by 32 each year from 2023 onwards.

Preliminary estimates of HIV-related mortality using the 569 deaths reported for 2022 through NHMR (out of a total of 603 deaths through NHMR and other reporting schemes) show that 13% (73 of 569) of deaths were HIV related and 7% (38 of 569) possibly HIV related. Estimated proportions for all HIV-related and possibly HIV-related deaths for 2019, 2020 and 2021 were 24% (102 of 418), 23% (144 of 633) and 18% (118 of 652), respectively. These estimates will be refined and include deaths from other sources (HIV and AIDS reporting system (HARS), HIV and AIDS New Diagnoses Database (HANDD), Office for National Statistics (ONS)) and HIV-related and preventable estimates for full implementation in England for 2023 data. Further work is underway to implement the pan-European definition of HIV-related mortality and preventable HIV-related mortality, which will replace the current 30% estimate of all-cause deaths occurring in people with HIV.

People first diagnosed in England who were also diagnosed late in 2021 (see definition in 2023 report appendix 1) were 5 times more likely to die within a year of their diagnosis (all-cause deaths), compared to those who were diagnosed promptly, this was lower than the same measure for 2019 and 2020, 6 times and 13 times, respectively. The 2020 figure may reflect the direct impact of COVID-19 infection, as well as its indirect impact through disruption to healthcare services.

Towards zero stigma and discrimination

The UNAIDS 2025 targets set an ambition for stigma to be experienced by under 10% of people living with HIV by 2025. Data from the Positive Voices 2022 survey (to be published soon) indicates slight improvements across a range of stigma indicators compared to Positive Voices 2017 and the People Living with HIV StigmaSurvey UK 2015. However, levels remain unacceptably high with 10% of people not sharing their HIV status with anyone outside of healthcare settings and 16% reporting ever feeling that they were not treated well in a healthcare setting because of their HIV status. Perceived stigma is also important as it can lead to delays in seeking healthcare behaviour. Overall, 31% of people living with HIV reported ever worrying that they would be treated differently to other patients by healthcare staff due to their HIV status and 15% reported ever avoiding going to healthcare services when they needed to go. Across most stigma indicators, younger people and trans, non-binary and people who define their gender in another way were more likely to report higher levels of stigma.

UNAIDS 95-95-95 progress

In 2022, England again achieved the UNAIDS 95-95-95 target nationally, with an estimated 95% (95% CrI 94% to 96%) of people living with HIV being diagnosed, 98% of those diagnosed being on treatment and 98% of those on treatment having an undetectable viral load (Figure 4). In London, the equivalent figures were 96%, 98% and 97% compared to 95%, 98% and 98% outside of London.

Figure 4. Progress towards the UNAIDS 95-95-95 targets by population group, England, 2019 to 2022

Theme 1: maintain people’s negative HIV status

Increased access to HIV combination prevention (including health prevention and promotion interventions, HIV partner notification, frequent HIV testing, PrEP and PEP) will help maintain the HIV status of those who are HIV negative (see flowcharts in the HIV Action Plan monitoring and evaluation framework 2022 report).

HIV partner notification is a highly effective HIV prevention strategy which is not only an extremely efficient way to find people living with undiagnosed HIV, but also provides the opportunity to maintain the HIV status of those partners who test negative. PrEP prevents people who are HIV negative from acquiring HIV, and those who test negative should be offered and maintained on PrEP whilst indicated, thereby preventing transmission.

A summary of current and provisional indicators for Theme 1 can be found in Table 4.

Table 4. Provisional indicators for Theme 1: maintain people’s negative HIV status

Code	Description	2019	2020	2021	2022
PT1A	Number of people attending specialist SHSs due to HIV partner notification	1,564	855	826	845
PT1B	Ratio of people attending specialist SHSs due to HIV partner notification among new HIV diagnosis in all SHSs	1.01	0.85	0.76	0.85
PT1C	Number of people attending though HIV partner notification who tested for HIV	1,403	706	624	663
PT1D	Ratio of HIV partner notification contacts tested to new HIV diagnoses at all SHSs – a ratio of one suggests each HIV diagnosis results in at least one partner having a test	0.9	0.7	0.58	0.66
PT1E	Number of people attending through HIV partner notification who tested positive	59	42	29	35
PT1F	Proportion of all HIV negative individuals accessing specialist SHSs categorised as having a PrEP need	Not available	Not available	7%	10%
PT1G	Proportion of all HIV negative individuals with estimated PrEP need who had this need identified	Not available	Not available	79%	83%
PT1H	Proportion of all HIV negative individuals with estimated PrEP need who started or continued PrEP	Not available	Not available	70%	71%
PT1I	Number of individuals accessing specialist SHSs who are receiving PrEP	Not available [note 5]	Not available [note 5]	Not available [note 5]	Not available [note 5]
PT1J	Number of individuals accessing specialist SHSs stopping PrEP	Not available [note 5]	Not available [note 5]	Not available [note 5]	Not available [note 5]
PT1K	HIV seroconversions among people receiving PrEP	Not available [note 5]	Not available [note 5]	Not available [note 5]	Not available [note 5]

[note 5] Data for 3 of the PrEP indicators is not available yet due to these being currently refined.

Partner notification (codes PT1A, PT1C, PT1D, PT1E)

Between 2019 and 2022, the number of people attending SHSs due to HIV partner notification decreased from 1,564 to 845. The ratio of number of new HIV diagnoses in all SHS settings to number of attendees in specialist SHSs due to HIV partner notification was 1.01 in 2019 and 0.85 in 2022 nationally. This means for every 100 HIV diagnoses in SHSs in 2022, 85 people subsequently attended SHSs because of HIV partner notification.

Overall, 3.8% (59 of 1,564) of those attending due to HIV partner notification tested positive for HIV in 2019 compared to 4.1% (35 of 845) in 2022. This is much higher than testing of eligible attendees in SHSs indicating that when implemented, HIV partner notification is an extremely effective strategy to find people with undiagnosed HIV.

While most HIV partner notification attendees were GBMSM (39%, 332 of 845), the highest ratios of new HIV diagnoses to HIV partner notification attendees were observed in heterosexual adults across all 4 years (Figure 5).

Figure 5. Number of people who attended SHSs due to HIV partner notification, and who had an HIV test or not, with a positive or negative result, and ratio of new HIV diagnoses over the number of HIV partner notification attendees, England, 2019 to 2022

Pre-exposure prophylaxis (codes PT1F, PT1G, PT1H)

HIV pre-exposure prophylaxis (PrEP) is a crucial component of prevention and involves the use of antiretroviral medicines by HIV negative people to reduce the risk of HIV acquisition. Following the roll out of routine PrEP commissioning in autumn 2020, the PrEP monitoring and evaluation framework was published in March 2022. Of the 6 indicators proposed through the PrEP monitoring and evaluation framework, 3 are presented and the remainder are currently being refined. All the data that follows relates to HIV negative individuals attending specialist SHSs, where PrEP is available for free in England.

The proportion of HIV negative people accessing specialist SHSs in England who were defined as having PrEP need (defined as at substantial risk of HIV) increased from 7% (88,216 of 1,183,155) in 2021 to 10% in 2022 (121,547 of 1,249,511). Among people with PrEP need, the proportion of people who had their PrEP need identified increased from 79% (70,081 of 88,216) in 2021 to 83% (101,124 of 121,547) in 2022. Among people with PrEP need, the proportion of people who initiated or continued PrEP rose slightly from 70% (61,510 of 88,216) in 2021 to 71% (86,324 of 121,547) in 2022.

GBMSM were consistently more likely than heterosexual men and women to have PrEP need, have that need identified and start or continue PrEP. In 2022, PrEP need in GBMSM was 69% (98,565 of 143,657), of whom 84% (83,223 of 98,565) had their PrEP need identified during a clinical consultation, and 74% (72,457 of 98,565) initiated or continued PrEP (Figure 6). This compares to 1.8% (4,156 of 228,668), 63% (2,607 of 4,156) and 38% (1,599 of 4,156) in heterosexual men and 0.8% (4,602 of 595,303), 59% (2,695 of 4,602) and 36% (1,676 of 4,602) in heterosexual women, respectively.

Among GBMSM, there was slight variation in PrEP need between the following ethnic groups: any other Asian (72%, 4,491 of 6,262), mixed (70%, 4,837 of 6,940) and white (69%, 72,050 of 103,798). PrEP need was slightly lower among GBMSM of black African (65%, 1,859 of 2,878) ethnicity. Among those with PrEP need, ethnicities with the highest initiation or continuation were the following: any other Asian (78%, 3,520 of 4,491), other (75%, 2,269 of 3,029), white (74%, 53,661 of 72,050) and mixed (73%, 3,533 of 4,837) (Figure 7). Initiation or continuation was lower in black African (63%, 1,163 of 1,859) and black Caribbean ethnic groups (64%, 1,097 of 1,711).

Among heterosexual men, PrEP need was highest in any other Asian (2.8%, 127 of 4,462), Indian, Pakistani or Bangladeshi (2.2%, 242 of 11,027), black African (2.1%, 296 of 14,311), white (1.8%, 2,610 of 147,988) and mixed (1.8%, 205 of 11,348), and lower in black Caribbean (1.2%, 111 of 9,340) and black other (1.1%, 37 of 3,450). Highest PrEP initiation or continuation was in men of any other Asian (50%, 64 of 127) ethnicity, lower in other (44%, 60 of 135) and white (41%, 1,058 of 2,610) ethnicities, and lowest in black African (35%, 105 of 296) and Indian, Pakistani or Bangladeshi (29%, 69 of 242) ethnicities (Figure 7).

Among heterosexual and bisexual women, PrEP need was highest in women of mixed (1.1%, 315 of 29,061) and black (1.0%, 503 of 50,101) ethnicities and lower in white (0.7%, 3,031 of 423,339) and Indian, Pakistani or Bangladeshi (0.5%, 106 of 21,587) ethnicities. Highest PrEP initiation or continuation was in those of other (52%, 58 of 112) and mixed (48%, 151 of 315) ethnicities, lower in white (37%, 1,128 of 3,031) and lowest in black  (27%, 137 of 503), and Indian, Pakistani or Bangladeshi (27%, 29 of 106) (Figure 7).

In 2022, there were differences by region in relation to PrEP need, need identification and in continuing and starting PrEP (Figure 6). For instance, PrEP need (17%, 55,100 of 320,224) and PrEP initiation or continuation (78%, 42,777 of 55,100) were both highest in London; PrEP need identification was highest in the East Midlands (89%, 5,348 of 6,022).

Figure 6. Proportion of people with need identified (by initiation status) or not identified among people with PrEP need, by gender, sexual behaviour and region, England, 2022

Figure 7. Proportion of people with need identified (by initiation status) or not identified among people with PrEP need, by gender, sexual behaviour and ethnicity, England, 2022

Post-exposure prophylaxis

In 2022, 8,421 people received HIV post-exposure prophylaxis (PEP), a 3% rise from 2021 (8,160). However, the number of people taking PEP declined by 30% between 2019 and 2022 (12,078 to 8,421). The decrease in PEP occurred over the same timeline as when PrEP became increasingly available.

GBMSM constituted 59% (4,966 of 8,421) of all those receiving PEP, with heterosexual men and heterosexual and bisexual women representing 10% (871 of 8,421) and 13% (1,077 of 8,421), respectively. Among the 398 people receiving more than one course of PEP in 2022, 77% (398 of 520) were GBMSM.

In this period, numbers receiving PEP fell by 39% (8,136 to 4,966) in GBMSM, by 41% (1481 to 871) among heterosexual men and by 40% (1,793 to 1,077) among heterosexual and bisexual women.

Between 2019 and 2022, the number who received PEP decreased in all ethnic groups, but was more pronounced for people of black Caribbean or black other ethnicity (-39%, 404 to 247) and for people of white ethnicity (-38%, 8,016 to 4,937).  

While the number of people receiving PEP declined in most regions in England (-29% in East Midlands to -42% in Yorkshire and Humber) between 2019 and 2022, there was an increase in the number of people receiving PEP by 41% (380 to 643) in the West Midlands.

Theme 2: reduce the number of people living with HIV who are undiagnosed

Scaling up HIV testing aims to reduce the number of people living with undiagnosed HIV and decrease the number of people diagnosed late, thereby reducing morbidity, mortality and onward transmission (see flowcharts in the HIV Action Plan monitoring and evaluation framework 2022 report).

Most people access HIV tests (including tests provided via the internet) through SHSs, but there are many people for whom these services are not accessible. This report provides an overview of testing activity in other settings including community settings.

A summary of current and provisional indicators for Theme 2 can be found in Table 5.

Table 5. Provisional indicators for Theme 2: reduce the number of people living with HIV who are undiagnosed

Code	Theme 2 indicator	2019	2020	2021	2022
PT2A	Estimated number of people living with undiagnosed HIV	5,600 (95% CrI 4,100 to 7,900)	4,700 (95% CrI 3,600 to 6,500)	4,400 (95% CrI 3,500 to 6,100)	4,500 (95% CrI 3,500 to 6,200)
PT2A(i)	Estimated number of people living with HIV (diagnosed and undiagnosed)	96,400 (95% CrI 94,800 to 98,900)	98,000 (95% CrI 96,500 to 100,300)	96,500 (95% CrI 95,200 to 98,500)	99,000 (95% CrI 97,700 to 100,900)
PT2B	Number of people HIV tested in all SHSs	1,325,983	927,241	1,048,551	1,155,551
PT2B(ii)	Number of people HIV tested in specialist SHSs	1,005,241	468,019	480,273	555,118
PT2C	Number of eligible people offered a test in specialist SHSs	1,302,194	638,152	651,561	744,180
PT2D	Number of people declining a test in specialist SHSs	296,953	170,133	171,288	189,062
PT2E	Number of GBMSM who had tested for HIV at least once in the calendar year prior their most recent HIV test in specialist SHSs	27,897	18,645	19,819	25,570
PT2F	Number of late diagnoses in those first diagnosed in England	842	682	812	865
PT2G	Number of late HIV presentations among all people previously diagnosed abroad	163	111	123	216
PT2H	HIV testing coverage for universal antenatal screening	99.7% (financial year 2018 to 2019)	99.8% (financial year 2019 to 2020)	99.8% (financial year 2020 to 2021)	99.8% (financial year 2021 to 2022)
PT2I	Number of people tested in other settings	Provisional indicator	Provisional indicator	Provisional indicator	Provisional indicator
PT2J	Number of tests in EDs in higher prevalence areas [note 6]	105,082	97,669	112,752	430,610 (April 2022 to March 2023)
PT2K	Coverage in EDs in higher prevalence areas	Provisional indicator	Provisional indicator	Provisional Indicator	Provisional indicator
PT2L	Number (and rate) of reactive tests in EDs in higher prevalence areas [note 6] [note 7]	1,160 (1.1%)	1,122 (1.1%)	1,334 (1.2%)	3,791 (0.9%) (April 2022 to March 2023)
PT2M	Number of new HIV positive tests that were confirmed new diagnoses in EDs in higher prevalence areas	Provisional indicator	Provisional indicator	Provisional indicator	Provisional indicator
PT2N	Number of positive tests in EDs in higher prevalence areas in people previously diagnosed and not in care	Provisional indicator	Provisional indicator	Provisional indicator	Provisional indicator

[note 6] This data is from 14 EDs who are participating in SSBBV and in April 2022 joined ED opt-out testing programme which is reflected in test numbers. Data for calendar years 2019 to 2021 is provisional from SSBBV which may underestimate testing assigned to ED settings and for April 2022 to March 2023, from the NHSE opt-out testing dashboard.

[note 7] Number of reactive tests does not equate to number of new diagnoses. A person may be tested more than once, a reactive test requires a confirmatory test and this data does not take into account people previously diagnosed.

Estimated number of people living with undiagnosed HIV (code PT2A)

The number of people living with HIV in England, including those undiagnosed, are estimated from a multi-parameter evidence synthesis (MPES) model, which is fitted to census, surveillance and survey-type prevalence data.

In 2022, there were an estimated 4,500 (95% CrI 3,500 to 6,200) people unaware of their HIV status, equivalent to 5% (95% CrI 4% to 6%) of all people estimated to be living with HIV in England (99,000, 95% CrI 97,700 to 100,900). An estimated 1,500 (95% CrI 1,000 to 2,400) GBMSM were living with undiagnosed HIV compared with 1,300 (95% CrI 900 to 1,900) black African heterosexual men and women and 1,400 (95% CrI 970 to 2,800) heterosexual men and women of ethnicities other than black African. Overall, there were 1,400 (95% CrI 1,100 to 2,000) people estimated to be living with undiagnosed HIV in London compared with 3,100 (95% CrI 2,300 to 4,500) outside London.

Trends in the estimated number of people living with undiagnosed HIV from 2019 to 2022 for different exposure groups and different regions vary considerably (Figure 8).

Estimates for GBMSM living in London which had consistently declined between 2019 and 2021 seem to have plateaued in 2022 (probability of increase 53% between 2021 and 2022). In the rest of England, the plateau for GBMSM appeared to start a year earlier in 2020 (probability of increase 52% between 2021 and 2022). The undiagnosed estimates for black African and non-black African heterosexual people have remained relatively stable between 2019 and 2022 for those living in London (probabilities of increase 39% and 41%, respectively) outside London (probabilities of increase 27% and 64%, respectively). Probabilities of a trend are directional: low probabilities, tending towards zero, mean evidence against an increase (therefore, a decreasing trend), whereas probabilities approaching 100% correspond to evidence for an increase. Probabilities in the middle range (between 30% and 70%) should be interpreted as no strong evidence in either direction.

Figure 8. Estimated number of people with undiagnosed HIV for London and the rest of England by exposure group, gender and ethnicity, England, 2019 to 2022

HIV testing

Number of people tested at all SHSs (code PT2B) and in specialist SHSs (code PT2B(i))

The number of people having an HIV test at all SHSs increased by 10% between 2021 and 2022 (1,048,551 to 1,155,551). Despite this rise, there were still 170,432 (13%) fewer people tested in 2022 compared to 2019. Half of all HIV tests (50%, 580,172 of 1,155,551) in 2022 were undertaken through people ordering tests via internet services. This compares with 53% (553,341 of 1,048,551) in 2021 and 19% (255,492 of 1,325,983) in 2019.

The continued recovery in testing between 2020 and 2022 was not seen equally across demographic groups. The number of GBMSM having an HIV test in a SHS increased by 7% from 180,236 in 2021 to 192,503 in 2022, 23% higher than the 156,865 people tested in 2019. In heterosexual and bisexual women, a 5% increase was seen between 2021 and 2022 (487,977 to 512,108), comprising 81% of 2019 testing levels (630,746). Despite a substantial fall between 2019 and 2020 (42%, 420,645 to 246,026), testing in heterosexual men increased by 14% between 2021 and 2022 from 247,425 to 280,767, comprising 67% of 2019 tests (420,645). In each group, online testing increased between 2019 and 2022; by 170% in GBMSM, by 146% in heterosexual and bisexual women and by 150% in heterosexual men.

Number of people offered (code PT2C) and declining a test (code PT2D) in specialist SHSs

In 2022, 35% (407,235 of 1,151,415) of eligible attendees were not offered a test, 16% (189,062 of 1,151,415) declined a test and 48% (555,118 of 1,151,415) were tested for HIV (Figure 9). In 2022, 23% (31,333 of 138,316) of eligible GBMSM were not offered a test, 3% (4,462 of 138,316) declined a test and 74% (102,521 of 138,316) were tested. This compares with 9% (12,085 of 138,589), 4% (5,898 of 138,589) and 87% (120,606 of 138,589) in 2019 respectively. In 2022, 27% (57,080 of 213,717) of eligible heterosexual men were not offered a test, 12% (25,887 of 213,717) declined a test and 61% (130,750 of 213,717) were tested. A higher proportion of eligible heterosexual and bisexual women were not offered a test (40%, 213,061 of 535,645) and declined a test (22%, 118,335 of 535,645) with only 38% (204,249 of 535,645) testing for HIV. The lower uptake of HIV testing in women is partially explained by data quality issues such as some reproductive health-related attendances being miscoded as sexual health attendances.

Among the 13,686 eligible heterosexual men of black African ethnicity attending specialist SHSs, 23% (3,123) were not offered a test, 6% (853) declined a test and 71% (9,710) received a test. Equivalent figures for the 200,031 eligible heterosexual men of other ethnicities were 27% (53,957), 13% (25,034) and 61% (121,040), respectively. Among the 23,970 eligible heterosexual and bisexual women of black African ethnicity attending specialist SHSs, 35% (8,362) were not offered a test, 17% (4,056) declined a test and 48% (11,552) were tested for HIV. This compares with 40% (204,699), 22% (114,279) and 38% (192,697) of the 511,675 eligible heterosexual and bisexual women of other ethnicities. While black African heterosexual individuals were more likely to be offered and accept an HIV test compared to heterosexual of other ethnicities, uptake was consistently worse among women. Furthermore, the higher proportion positive among black African heterosexual individuals means the potential to have missed diagnostic opportunities is much greater in this group.

Figure 9. HIV testing offer and uptake among people tested at specialist SHSs, by ethnicity, sexual orientation and gender, England, 2022

Frequency of HIV testing among GBMSM (code PT2E)

The 2016 HIV testing recommendations from the National Institute for Health and Care Excellence (NICE) suggest that GBMSM should be tested for HIV at least once a year and every 3 months if they are having sex without condoms with new or casual partners.

The number of GBMSM attending specialist SHSs and who had at least one HIV test in the year before their most recent test remained broadly consistent over the last 4 years, with 27,897 (46%) in 2019, 18,645 (52%) in 2020, 19,819 (45%) in 2021, 25,570 (47%) in 2022. In this time, the proportion of tested attendees who had tested 4 or more times in the year before their most recent test declined (3.9% in 2019, 2.9% in 2020, 1.7% in 2021, 2% in 2022).

Late HIV diagnosis and late presentation

Late diagnosis among those first diagnosed in England (code PT2F)

In England, the proportion of diagnoses made at a late stage of infection (definition of late HIV diagnosis indicator with code PT2F in 2023 report appendix 1) rose from 41% (842 of 2,078) in 2019 to 44% (865 of 1,972) in 2022 but were stable compared with 2021 (45%, 812 of 1,806) while the number diagnosed late rose slightly.

The rise between 2020 and 2022 is likely to reflect delays in diagnoses from 2020 due to the impact of COVID-19 pandemic on sexual health and HIV services as well as a rise in diagnoses among people likely to have acquired HIV abroad in the same period.

In GBMSM, the proportion diagnosed late increased from 29% (285 of 977) in 2019 to 37% (233 of 627) in 2022. This masks a dip in number diagnosed late between 2019 (285) and 2020 (178) with proportions and numbers remaining relatively stable between 2021 (36%, 238 of 668) and 2022 (37%, 233 of 627) (Figure 10).

The increase in GBMSM was observed in all ethnic groups other than men of black African ethnicity (24%, 5 of 21) (Figure 10), with a higher number and higher proportion of people diagnosed late among men of white (35%, 129 of 366), Asian (46%, 34 of 74) and mixed or other (38%, 30 of 79) ethnicities, respectively in 2022.

In men exposed through sex with women, the proportion diagnosed late increased from 55% (234 of 429) in 2019 to 62% (214 of 347) in 2021 then fell to 57% (200 of 351) in 2022, with the number of late diagnoses in 2022 below 2019 level (Figure 11). In 2022, the proportion and number diagnosed late in men of white ethnicity was 59% (74 of 126), 55% (60 of 110) among men of black African ethnicity, 54% (7 of 13) among men of black Caribbean or black other ethnicity, 60% (18 of 30) in men of Asian ethnicity and 54% (20 of 37) in men of other or mixed ethnicities.

Among women exposed through sex with men, the proportion diagnosed late remained relatively stable between 2019 and 2022, with the numbers rising from 47% (216 of 456) in 2019 to 49% (239 of 492) in 2022 (Figure 12). In 2022, the proportion (and number) was 45% (55 of 122) in white women, 51% (109 of 215) in black African women, 47% (14 of 30) in women of black Caribbean or black other ethnicity, 68% (17 of 25) in Asian women and 46% (21 of 46) in women of mixed or other ethnicity.

Figure 10. Late HIV diagnoses for GBMSM exposed through sex with men by ethnicity and by region of residence, England, 2019 to 2022

Figure 11. Late HIV diagnoses for men exposed through sex with women by ethnicity and by region of residence, England, 2019 to 2022

Figure 12. Late HIV diagnoses for women exposed through sex with men by ethnicity and by region of residence, England, 2019 to 2022

Between 2019 and 2022, the proportion of late HIV diagnoses among women exposed through sex with men who resided in London increased from 46% (66 of 144) in 2019 to 52% (76 of 146) in 2022 (Figure 12). In most other regions, there was also an increase in proportion late diagnosed except in the East Midlands (50% to 40%), the South East (57% to 56%), Yorkshire and Humber (49% to 45%) and East of England (49% to 35%). In 2022, the highest proportion late diagnosed was reported for women residing in the West Midlands (56%, 28 of 50) and the South East (56%, 44 of 79).

Late HIV presentation among those previously diagnosed abroad (code PT2G)

Amongst people diagnosed in England are individuals who were previously diagnosed outside England, and who present at a late stage of infection. Among all new HIV diagnoses made in England in 2022, 36% (1,361 of 3,805) were among adults previously diagnosed abroad, higher than previous years (27%, 1,045 of 3,864, in 2019 and 26%, 805 of 3,118, in 2021). However, late presentation represented just 20% (216 of 1,081) of all diagnoses made at a late stage of infection in 2022.

The proportion of people diagnosed who presented at a late stage of infection decreased from 21% (163 of 788) in 2019 to 18% (216 of 1,183) in 2022, however, the number with a late infection at presentation rose by 33%.

HIV testing in settings other than sexual health services

Universal antenatal screening (code PT2H)

Universal antenatal screening is available through the NHS infectious diseases in pregnancy screening (IDPS) programme. HIV testing coverage for pregnant women in antenatal care through remained high at 99.8% with 633,307 women tested (634,700 eligible women) in England during the 2021 to 2022 financial year. The proportion of women who tested positive for HIV during pregnancy remained low at 0.92 per 1,000 eligible pregnant women. The proportion of newly diagnosed women remained at 0.11 per 1,000 eligible women. This has met the UNAIDS 2025 target of 95% coverage of antenatal services testing to end vertical HIV transmission.

HIV testing in other settings (code PT2I)

1. Home and community

In 2022, the HIV and syphilis self-sampling framework delivered 45,920 kits, an increase of 21% compared with 38,027 kits in 2021, with an HIV test reactivity rate of 0.61% in 2022.

Another 16,162 tests were reported through the UKHSA survey of HIV testing in community settings in 2022, compared with 13,555 tests reported in 2021 and 10,780 in 2020. The overall reactivity rate was 0.5%.

2. Blood donation services

In 2022, over 1.8 million blood donations were screened across the UK, with 9 donors confirmed positive for HIV (0.5 per 100,000 donations): 5 were new donors (3.7 per 100,000 donations) and 4 were repeat donors (0.9 per 100,000 donations). There were 8 men of age ranging between 29 years and 60 years (median 36 years), of whom 3 reported sex with men and 5 reported sex with women. Of the new donors who tested positive, one person knew their positive status prior to blood donation, and one could have acquired HIV within 4 months prior to donation according to avidity test results. Two of the repeat donors had likely acquired HIV recently, both of whom had not disclosed partner history. 

From June 2021, a major change in blood donor selection policy was introduced across the UK following recommendations from the FAIR (For the Assessment of Individualised Risk) steering group. The changes allow GBMSM in established relationships and people with partners from HIV endemic areas to donate if no other donor selection criteria apply. Data to the end of 2022 has shown that observed cases of recently acquired HIV remain low with no impact on the safety of the supply with the residual risk that blood donation screening does not detect a donation made in the period remaining below 1 in 1 million donations. Close monitoring remains in place. 

3. Tuberculosis testing

In 2022, testing information was available for 97% (3,916 of 4,031) of people notified with tuberculosis (TB) who had a previously unknown HIV status and excluding those who were diagnosed with TB post-mortem. Of these people, 97% (3,780 of 3,916) were tested for HIV (testing coverage).

4. People who inject drugs

The unlinked anonymous monitoring (UAM) survey of people who inject drugs (PWID) is an annual cross-sectional biobehavioural survey that recruits people who have ever injected psychoactive drugs who attend specialist drug and alcohol services across England, Wales, and Northern Ireland. During 2020 and 2021, the COVID-19 pandemic impacted recruitment to the UAM survey, with changes to the number, characteristics and geographical distribution of the participants recruited during these years. In England, the proportion of PWID who reported ever being tested for HIV was 81% (95% confidence interval (CI) 79% to 82%) in 2022, with 48% (95% CI 46% to 50%) of these people reporting having a test in current or previous survey year. Among PWID who started injecting for the first time within the past 3 years, 70% (95% CI 61% to 78%) reported ever having had a diagnostic HIV test in 2022, with 66% (95% CI 54% to 76%) of these people reporting a test in the current or previous survey year.

5. Prisons

In March 2018, opt-out testing of bloodborne viruses (BBVs), including HIV, was implemented in all adult prisons in England. New arrivals and people transferring between prisons should now be offered HIV tests, unless they have been tested within the last year and are not at risk, or they have a known HIV positive status. Between April 2022 and March 2023, 89% of new receptions and transfers not already confirmed as HIV positive were offered HIV testing within 7 days of reception (142,432 of 158,922). Where a test was not declined and was considered appropriate, 68% were tested within 2 weeks of reception date (79,384 of 116,042).

6. General practice and out-patient secondary care

In 2022, 22 laboratories reported HIV testing data from GP and hospitals to the SSBBV. A total of 122,899 people tested at a GP in 2022 (94,340 in 2021) and 249,820 in secondary care (221,124 in 2021) as reported through SSBBV, with 0.4% and 1.0% testing positive, respectively. The number of individuals tested are comparable to pre-COVID-19 pandemic levels. An individual can test in more than one service type.

7. Emergency departments (codes PT2J to PT2N)

As part of the HIV Action Plan, NHSE expanded opt-out testing in EDs in the 21 local authority areas across the country with the highest diagnosed HIV prevalence, in line with the 2016 NICE HIV testing recommendations. Launched in 2022, the programme included trusts in Manchester, Blackpool, Brighton and London which met the diagnosed HIV prevalence criteria (prevalence rate of 5 and above per 1,000 people aged 15 to 59), with London adopting a city-wide implementation approach to ED testing. It was also expanded to include hepatitis B and C testing. The aim of BBV testing in EDs is to address health inequalities experienced by groups of people living with HIV who may not routinely attend SHSs.

The 14 EDs for which data is presented in PT2J and PT2L are participating in the ED opt-out testing programme. The number of tests in these EDs increased with the instigation of the ED opt-out testing programme from 112,752 in 2021 to 433,610 in the first 12 months of the programme (April 2022 to March 2023). The reactive test rate decreased from 1.2% to 0.9% between these time periods. It should be noted that a reactive test does not equate to a new diagnosis. People may be tested more than once, those with a positive reactive test require a confirmatory test or may have been diagnosed previously.

Overall, in the first 12 months (April 2022 to March 2023) of the ED opt-out testing programme, programmatic data from NHSE reported 857,117 HIV tests, 474,723 hepatitis C test and 366,722 hepatitis B test across 33 sites. On 9 November  2023, UKHSA published an interim evaluation report for the first 12 months of the programme which found the population eligible as part of ED attendance was older compared to the population tested for BBVs in other settings. A deep-dive analysis of 5 participating sites found approximately half of eligible attendees had a BBV test, with little difference between demographic characteristics of people tested within sites. However, between the 5 sites, test uptake varied between 22% and 74%. In the 5 deep-dive sites, HIV test positivity was 0.9% (including those with known positive HIV status) and 0.07% among those newly diagnosed.

From the programme reported data, 79% of people newly diagnosed with HIV were linked to care (attended a first HIV consultation) and 35% of people previously diagnosed with HIV and not currently in care were re-engaged (attended an HIV consultation following HIV test results). Across 16 of the 33 sites for the evaluation period, 78 people were newly diagnosed with HIV at their ED attendance and 59 were previously diagnosed and not currently receiving care: 40% (31 of 78) of the newly diagnosed people were linked to HIV care within 2 weeks of a positive test in EDs and 58% (45 of 78) within a month. Among the 59 people who were previously diagnosed,13% (8 of 59) of those previously diagnosed were linked to care within a month, and 27% (16 of 59) within 3 months. A final report evaluating the impact of ED opt-out BBV testing will be published in 2025.

Theme 3: reduce the number of people with transmissible levels of virus

For those who test positive, minimising time from diagnosis to initiation of treatment will reduce the time people are living with a detectable viral load (see flowcharts in the HIV Action Plan monitoring and evaluation framework 2022 report).

Enabling individuals to remain on treatment with an undetectable viral load reduces overall transmissible levels of virus and the opportunity for onwards transmission to sexual partners. This includes ensuring that individuals already diagnosed with HIV are linked to, engaged in, and where relevant, re-engaged in care so that they can access effective treatment and achieve viral suppression.

A summary of current and provisional indicators for Theme 3 can be found in Table 6.

Table 6. Provisional indicators for Theme 3: reduce the number of people living with transmissible levels of virus

Code	Theme 3 indicator	2019	2020	2021	2022
PT3A	Estimated number of adults living with transmissible levels of virus in England (lower- to upper-level estimates)	13,308 to 26,137	15,482 to 27,674	14,823 to 25,690	14,934 to 24,918
PT3A(i)	Number of adults not linked to care within calendar year of diagnosis	527	525	446	382
PT3A(ii)	Number of adults seen for care with missing treatment status	0	0	304	147
PT3A(iii)	Number of adults on treatment and no evidence of viral suppression	4,618	4,996	3,529	1,834
PT3B	Number (and proportion) of people linked to care within 2 weeks of HIV diagnosis	1,858 (70%)	1,542 (73%)	1,646 (75%)	1,748 (76%)
PT3C	Number (and proportion) of people linked to care within one month of HIV diagnosis	2,221 (83%)	1,769 (84%)	1,884 (86%)	1,984 (87%)
PT3D	Number (and proportion) of adults starting treatment within 3 months of diagnosis	2,138 (76%)	1,673 (74%)	1,742 (75%)	1,816 (74%)
PT3E	Number of adults seen for HIV care and not on treatment	1,616	1,034	1,184	1,665
PT3F	Number (and proportion) of adults treated who are not virally suppressed (viral load over 200 copies per mL)	2,096 (2.3%)	1,904 (2.1%)	1,801 (2.0%)	1,997 (2.1%)
PT3G	Number (and proportion) of adults not attending care for at least 15 months (‘not retained in HIV care’)	4,669 (6%)	6,819 (8%)	6,392 (7%)	6,390 (7%)
PT3H	Number of adults who had not attended care for at least 15 months and have attended a new appointment	2,687 (57%)	4,084 (60%)	3,203 (50%)	Not applicable
PT3I	Number of adults effectively re-engaged in care – people who had not attended care for at least 15 months, reattended and who have undetectable viral load within 6 months	925 (50% of 1,845 not virally suppressed at re-attendance)	1,320 (58% of 2,294 not virally suppressed at re-attendance)	964 (62% of 1,545 not virally suppressed at re-attendance)	Not applicable
PT3J	Number of people who had not attended care for more than 15 months and have attended a new appointment following opt-out testing in ED	Provisional	Provisional	Provisional	Provisional

Estimated number of adults with transmissible levels of virus in England (code PT3A)

In 2022, a lower-level estimate of 14,934 adults (aged 15 and over) living with HIV had transmissible levels of virus, equivalent to 15% of the 99,000 (95% CrI 97,700 to 100,900) estimated to be living with HIV in England. The equivalent numbers for 2019, 2020 and 2021 were 13,308 (14%), 15,482 (16%) and 14,823 (15%), respectively (Figure 13).

Of the 14,934 adults (lower-level estimate) with transmissible levels of virus, an estimated 4,500 (95% CrI 3,500 to 6,200) (30%) remained undiagnosed in 2022 with most living with diagnosed HIV, of whom:

• 382 (3%) were first diagnosed in 2022 and not linked to HIV care by the end of the year
• 6,390 (43%), were not retained in HIV care (not seen in care for at least 15 months since last HIV care appointment between October 2020 and September 2021)
• 1,665 (11%) attended HIV care in 2021 but were not receiving treatment
• 1,997 (13%) were on treatment in 2021 but were not virally suppressed (viral load below or equal to 200 copies per mL) (Figure 13)

In a higher-level estimate, the number of adults living with transmissible levels could reach 24,918, if we include:

• 147 who were seen for HIV care in 2022 but had no information about their HIV treatment status
• 1,834 who were on HIV treatment in 2022 but had no evidence of viral suppression (95% of whom had missing viral load data for 2 consecutive years)
• 8,003 seen at least once between January 2016 and September 2020 and not seen again by end of 2022 (Figure 13)

For 2019, 2020 and 2021, the higher-level estimates were 26,137, 27,674 and 25,690, respectively.

Of the 14,934 adults (lower-level estimate) with transmissible levels of virus in 2022, 4,606 were GBMSM, 2,229 were black African women exposed through sex with men, 1,760 (were from other ethnicities exposed through sex with men, 1,165 were black African men exposed through sex with women and 1,369 were men of other ethnicities exposed through sex with women.

In 2022, 42% of the 14,934 adults estimated to be living with transmissible levels of virus resided in London.

Further work to refine estimates of number of people living with transmissible levels of virus include improving definitions and developing a model to take into account missing data and uncertainty in the distinct categories included in the calculations above.

Figure 13. Lower-level and upper-level estimates for the number of adults living with transmissible levels of virus, England, 2022

Linkage to HIV care (codes PT3B and PT3C)

Current BHIVA (British HIV Association) standards of care indicate that people should be linked to care within 2 weeks of diagnosis. In 2022, 76% (1,748 of 2,291) of adults first diagnosed with HIV in England were linked to HIV care within 2 weeks, 87% (1,984 of 2,286) within one month and 93% (2,129 of 2,280) within 3 months. This compared to 70% (1,858 of 2,669) within 2 weeks, 83% (2,221 of 2,665) within one month and 91% (2,410 of 2,657) within 3 months in 2019 (Figure 14).

Figure 14. Linkage to HIV care within 2 weeks, one month and 3 months among adults first diagnosed with HIV in England, England, 2019 to 2022

In 2022, 79% (558 of 705) of GBMSM, 72% (281 of 392) of men exposed through sex with women, 75% (399 of 535) of women exposed through sex with men and 74% (29 of 39) of PWID were linked to care within 2 weeks of HIV diagnosis.

The proportion of adults linked to care within 2 weeks increased across all ethnic groups when comparing 2019 to 2022 (Figure 15). In 2022, among people of white ethnicity, 80% (720 of 904) were linked to care within 2 weeks of diagnosis, this compares to 76% (422 of 558) and 78% (154 of 197) among people of black African and Asian ethnicities, respectively.

Figure 15. Linkage to HIV care within 2 weeks among adults first diagnosed in England with HIV by ethnicity, England, 2019 to 2022

Linkage to care increased across all regions apart from the North East, the North West and Yorkshire and Humber (data from a laboratory in Yorkshire and Humber has been excluded due to a data quality issue) (Figure 16). In 2022, linkage to care was highest in London (83%, 766 of 923), the South West (85%, 70 of 82) and the South East (80%, 197 of 247), but lower in the North East (72%, 44 of 61), West Midlands (74%, 124 of 167) and the North West (71%, 151 of 214).

Figure 16. Linkage to HIV care within 2 weeks among adults first diagnosed with HIV in England by UKHSA region of residence, England, 2019 to 2022

By setting of diagnosis, as reported by the sexual health or HIV clinic, linkage to care was highest in SHSs or HIV clinics (84%, 1,014 of 1,204), slightly lower in ED settings (74%, 105 of 142), other outpatients (76% 158 of 209) and lower in GP settings (65%, 104 of 160) and in inpatient care (63%, 147 of 233) in 2022 (Figure 17). The ‘other outpatient’ category includes NHS outpatients, infectious disease outpatients and antenatal clinics. ‘Community and home testing’ includes community testing, self-sampling, home testing and pharmacy. ‘Other services’ include drug and alcohol services, prisons, private medical care, blood transfusion services and services categorised as other.

Figure 17. Linkage to HIV care within 2 weeks among adults first diagnosed with HIV by first setting of diagnosis, England, 2019 to 2022

Prompt HIV treatment (code PT3D)

Among those diagnosed first in England in 2022, 74% (1,816 of 2,444) started HIV treatment also known as anti-retroviral therapy (ART) within 3 months of diagnosis, compared with 76% (2,138 of 2,819) in 2019, 74% (1,673 of 2,271) in 2020 and 75% (1,742 of 2,313) in 2021.

Among GBMSM first diagnosed in England in 2022, 81% (588 of 724) started ART within 3 months, compared with 76% (429 of 564) for women exposed through sex with men and 72% (297 of 411) for men exposed though sex with women (Figure 18).

In 2022, the proportion of people diagnosed who started ART within 3 months was highest for people of white (81%, 774 of 960) and Asian (80%, 167 of 208) ethnicities and lowest among people of black (76%, 34 of 49), and mixed or other (71%, 183 of 256) ethnicities.

Among people first diagnosed in England, the proportion of people who started ART within 3 months was 68% (248 of 513) for people living in the North of England, 69% (688 of 994) for those living in London, 83% (485 of 587) for those living in the Midlands and East and 84% (295 of 350) for those living in the South.

Figure 18. People starting ART within 3 months of diagnosis by probable route of exposure, England, 2019 to 2022

Treatment coverage (codes PT3A(ii) and PT3E)

The proportion of people receiving ART amongst people in HIV care remains extremely high, at 98% (92,577 of 94,397) in 2022, compared with 98% (88,840 out of 90,470) in 2019.

In 2022, 1,665 adults were attending HIV care and were not receiving ART compared to 1,616 for 2019, 1,034 for 2020, and 1,184 for 2021. In 2022, there were 147 people seen for HIV care with unknown or missing treatment status.

Of the 1,665 adults attending HIV care and not receiving ART, 30% (496) were GBMSM, 20% (337) were black African heterosexual women, 10% (172) were women of other ethnicities and 19% (305) were heterosexual men (Figure 19). In 2022, 47% (777 of 1,665) of adults attending care and not receiving ART were living in London.

Figure 19. Adults (people aged 15 years and over) seen for HIV care and not on ART by probable route of exposure, gender and ethnicity, England, 2019 to 2022

Viral suppression (codes PT3A(iii) and PT3F)

ART not only prevents illness and death in people living with HIV but achieving viral suppression also prevents transmission of HIV. This is referred to as treatment as prevention (TasP) and is also promoted as undetectable = untransmittable or U = U.

In England, 98% (86,116 of 88,116) of people on treatment and with viral load results available were virally suppressed in 2022, similar to previous years.

In 2022, 1,997 adults on ART had a reported detectable viral load (over 200 copies per mL), compared with 2,096 in 2019, 1,904 in 2020 and 1,801 in 2021. In addition, 1,834 adults on treatment in 2022 did not have any viral load recorded for that year and either no viral load reported or a detectable viral load (over 200 copies per mL) reported in 2021, a 60% decrease (4,618) compared with the same measure for 2019.

In 2022, the proportion of adult GBMSM on treatment who were not virally suppressed (over 200 copies per mL) was 2% (660 of 39,578), whilst heterosexual men and heterosexual women of different ethnic groups ranged between 2% and 4% (Figure 20).

Figure 20. Adults (people aged 15 years and over) on ART who are not virally suppressed (viral load over 200 copies per mL) by probable route of exposure, gender and ethnicity, England, 2019 to 2022

Retention in care (codes PT3G, PT3H and PT3I)

Current BHIVA standards of care recommend that people living with HIV should attend specialist HIV care annually. Though most people are seen within 12 months, attendance may fall slightly outside a precise 12-month period. Therefore, people not retained in care are defined as those not seen within 15 months of their last attendance for the below measures.

Among the 88,069 adults seen for HIV care between 1 October 2020 and 30 September 2021, 6,390 (7%) were not retained in care that is, they were not seen for care after the last appointment in that period for at least 15 months. Similar measures for 2019, 2020 and 2021 were 4,669 (of 84,5476, 6%), 6,819 (of 86,776, 8%) and 6,392 (of 86,161, 7%), respectively.

During the COVID-19 pandemic, fewer people were seen in HIV care compared to previous years due to the impact of the public health measures to control COVID-19 pandemic on HIV care access and delivery. People not retained in care are not receiving the treatment, and need support to remain healthy and virally suppressed.

Among GBMSM, the proportion not retained in care was 5% (1,847 of 35,221), with the lowest proportion among black African GBMSM (3%, 22 of 644), compared with 5% among white (1,368 of 27,750) GBMSM and black Caribbean GBMSM (37 of 738) and 6% in the other ethnic groups (Figure 21). Among GBMSM living in London, the proportion not retained was 5% (615 of 13,660) compared with 6% (1,232 of 21,561) for those living outside London.

In 2022, 5% (787 of 13,803) men exposed through sex with women were not retained in care, with lowest level (5%) among men of black African (335 of 6,383), black other (22 of 444) and Asian (35 of 649) ethnicities, 6% for white (274 of 4,410) and black Caribbean (33 of 557) ethnicities and 7% (45 of 662) for mixed or other ethnicities (Figure 21). As for GBMSM, the proportion not retained for men exposed through sex with women and living in London was 5% (221 of 4,494), and 6% (566 of 9,309) for those living outside London.

Among women exposed through sex with men, 5% (1,150 of 22,799) were not retained in care in 2022. By ethnicity, 2% (17 of 809) of Asian women were not retained in care in 2022 compared with 5% of black African (672 of 14,063) and black Caribbean (43 of 904) women, and 6% in the remaining ethnic groups (white, 240 of 4,016, other black, 51 of 801, and mixed or other, 7 of 1,244, ethnicities) (Figure 21). In 2022, the proportion not retained in care for women exposed through sex with men and living in London was 4% (298 of 7,598), and 6% (852 of 15,201) for those living outside London.

Of the 6,392 adults who were categorised as not receiving HIV care for at least 15 months by end of 2021, 3,203 subsequently attended HIV care after that care gap, 52% (1,658 of 3,203) of whom were already virally suppressed (viral load below or equal to 200 copies per mL) at that first appointment after that gap. Among the remaining 1,545 adults who had a missing viral load or viral load over 200 copies per mL when they re-engaged with care, 964 (62%) had an undetectable viral load within 6 months of the returning appointment. This compares to 50% (92 of 1,845) in 2019 and 58% (1,320 of 2,294) in 2020.

Figure 21. Adults (people aged 15 years and over) not retained in care by ethnicity, England, 2022

Theme 4: manage and prevent co-morbidities and HIV-related conditions

Delivering high quality care in line with BHIVA standards of care and BHIVA guidelines will improve quality of life, and reduce morbidity, AIDS-defining condition diagnoses at HIV diagnosis and HIV-related mortality to achieve the interim ambitions for 2025 and to end transmission of HIV by 2030.

The indicators for this theme have not been fully developed (Table 7 and flowcharts in the HIV Action Plan monitoring and evaluation framework 2022 report). Using data sources including Positive Voices, the survey of people living with HIV in the UK, UKHSA’s HIV surveillance systems and in collaboration with BHIVA and BASHH (British Association for Sexual Health and HIV), and other stakeholders, we plan to provide an overview of progress to ensure those living with HIV experience holistic person-centred care. This will include developing indicators to measure the extent of co-morbidities and HIV-related conditions and that relate to BHIVA standards of care and UNAIDS 2025 targets (such as 90% of people with HIV being linked to people-centred and context-specific integrated services and 95% of women having access to sexual and reproductive health services).

Table 7. Potential indicators for Theme 4: manage and prevent co-morbidities and HIV-related conditions in people living with HIV

Code	Definition or description
PT4A	Successful linkage from paediatric to adult HIV care
PT4B	Drug resistance to different classes of ART agents
PT4C	Hepatitis B co-infection
PT4D	Hepatitis C co-infection (diagnoses, treatment and cure)
PT4E	Patient satisfaction with services, namely HIV-specific patient-reported experience measures (PREMs)
PT4F	Number and proportion of people whose GP is aware of HIV status

Theme 5: improve quality of life and reduce HIV stigma

Reducing HIV stigma and improving quality of life are key to achieving the HIV Action Plan’s ambition of ending HIV transmission by 2030 and the UNAIDS 2025 wellbeing targets which include an assessment of punitive laws and policies, less than 10% of people living with HIV experiencing stigma and discrimination and less than 10% experiencing gender inequality and violence. This is because HIV-associated stigma remains a significant factor in people’s experience of living with HIV and negatively impacts on access to testing and effective prevention interventions. Furthermore, for some people with diagnosed HIV, it can be challenging to prioritise their HIV care and adherence to treatment if they are experiencing personal, financial, housing, immigration, or mental health difficulties, and stigma. Increasing retention in care, adherence to treatment and support in achieving good health outcomes in turn reduces HIV transmission. Improving the quality of life for people with long-term conditions is a well-established goal for the NHS and wider health and care system.

In Theme 5, we present data for 6 potential indicators for stigma and quality of life from 3 UK-based surveys, the People Living with HIV StigmaSurvey UK 2015, Positive Voices 2017 and Positive Voices 2022 (to be published soon) (Table 8 and flowcharts in the HIV Action Plan monitoring and evaluation framework 2022 report).

To monitor quality of life and stigma for people living with HIV, further work with the HIV Action Plan Implementation Steering group and with professional groups, HIV community, and academic partners is currently underway to evaluate these potential indicators and new ones including measures of self-stigma, stigma among family and friends and experiences of verbal or sexual harassment due to HIV status, as well as other measurements of wellbeing and quality of life (for example patient-reported outcome measures (PROMS)).

Table 8. Potential indicators for Theme 5: improve quality of life and reduce stigma in people living with HIV

Code	Theme 5 provisional indicator description	StigmaSurvey UK (2015)	Positive Voices survey (2017)	Positive Voices survey (2022)
PT5A	Life satisfaction – people gave a score between 1 and 10 to the question: Overall, how satisfied are you with your life nowadays?	Not available	7.4	7.3
PT5B	Enacted stigma – people living with HIV ever felt that they were ever not treated well in a healthcare setting	26% [note 8]	19% [note 8]	16%
PT5C	Perceived stigma – people living with HIV felt that they were ever being refused healthcare or delayed a treatment or medical procedure	15%	11%	10%
PT5D	Anticipated stigma – people living with HIV reported ever worrying that they would be treated differently to other patients	46%	35%	31% [note 9]
PT5E	Anticipated stigma – people reported ever avoiding going to healthcare services when they needed to go	24% [note 10]	18% [note 10]	15%
PT5F	Experience of HIV stigma in other settings	Potential indicator	Potential indicator	Potential indicator
PT5G	Sharing one’s HIV status outside of healthcare settings – people living with HIV who did not share their HIV status with anyone outside of healthcare settings	15%	13%	10%

[note 8] Respondents were asked if they had been treated differently to other patients which is different to Positive Voices 2022, where respondents were asked if they felt they were not treated well in a healthcare setting.

[note 9] In Positive Voices 2022, the question specified ‘by healthcare staff.’

[note 10] Respondents were asked if they avoided seeking healthcare when they needed it which is slightly different to Positive Voices 2022, where respondents were asked if avoided going to healthcare services when they needed to go.

Quality of life and life satisfaction (code PT5A)

The mean life satisfaction score (one of 4 ONS measures of personal wellbeing) from the provisional data for the Positive Voices 2022 survey (to be published soon) was 7.3, a slight decrease compared to the 7.4 score for the Positive Voices 2017 survey. For Positive Voices 2022, mean life satisfaction was lowest for younger people, and for people who identify as trans, non-binary or in another way than men or women.

In Positive Voices 2017 and 2022, people living with HIV reported more issues with mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, the 5 EuroQol EQ-5D-5L domains, than the general population. For Positive Voices 2022, 48% of people living with HIV reported anxiety and depression, a slight decrease compared with the 49% for Positive Voices 2017, but higher than the 33% reported in the general population in 2018.

Stigma and discrimination in healthcare settings (codes PT5B to PT5E)

For enacted stigma in the provisional data for Positive Voices 2022, 16% of people living with HIV reported that they ever felt they were not treated well in a healthcare setting because of their HIV status compared with 19% for Positive Voices 2017 and 26% for the People Living with HIV StigmaSurvey UK 2015 reporting ever being treated differently to other patients.

Perceived stigma is also important as it can lead to delays in healthcare seeking behaviours.  For Positive Voices 2022, 10% of people living with HIV reported they ever felt that they had been refused healthcare or had a treatment or medical procedure delayed because of their HIV status, as compared to 11% for Positive Voices 2017 and 15% for the People Living with HIV StigmaSurvey UK 2015.

Anticipated stigma can result from internalised stigma and fear of discrimination, and can impact healthcare behaviours and psychosocial outcomes. Through Positive Voices 2022, 31% of people living with HIV were ever worried that they would be treated differently to other patients by healthcare staff due to their HIV status compared with 35% for Positive Voices 2017 and 46% for the People Living with HIV StigmaSurvey UK 2015 who reported ever being worried about being treated differently to other patients.

For the Positive Voices 2022, 15% of people living with HIV reported that they ever avoided going to healthcare services when they needed to go. Equivalent measures were 18% for Positive Voices 2017 and 24% for the People Living with HIV StigmaSurvey UK 2015 where respondents reported that they avoided seeking healthcare when they needed it.

Across most stigma indicators in Positive Voices 2022, younger people, gay and bisexual men (compared with heterosexual men), people who identify as trans, non-binary or in another way than men or women and people living in the North of England reported higher levels of stigma.

Sharing one’s HIV status (code PT5G)

Positive Voices 2022 survey data showed that 10% of people living with HIV had not shared their positive HIV status with anyone outside of healthcare settings, compared with 13% in Positive Voices 2017 and 15% in the People Living with HIV StigmaSurvey UK 2015.

Among respondents to the Positive Voices 2022 survey, older people (16% for people 65 and older compared to 9% for people 18 to 34 years old), black African respondents (15% compared to 7% for white British respondents) and women and heterosexual men (14% for both, compared to 7% for gay and bisexual men), were more likely to not share their HIV status with anyone.

Concluding remarks

This 2023 report of the HIV Action Plan monitoring and evaluation framework provides an overview of progress towards meeting England’s HIV Action Plan ambitions of reducing HIV transmission by 80% and HIV related and preventable deaths and AIDS diagnoses by 50% from 2019 to 2025. This report also sets out key indicators to identify where more work needs to be done in order to meet these ambitions. Where possible, differences between gender, sexual orientation, ethnic groups and region have been presented to provide a deeper understanding of underlying trends and orientate future actions.

While there is much to celebrate, with high levels of people diagnosed, treated and with undetectable viral load, there is also much more to do. HIV incidence might be plateauing in GBMSM and increasing among heterosexual populations, particularly among women. Across all groups, reductions observed in new diagnoses first made in England have been concentrated in white populations with ethnic minority groups increasingly left behind.

Partner notification remains an extremely effective prevention intervention with a high positivity among those tested. It can also provide access to HIV testing among people who would not otherwise attend SHS. However, it can be time consuming and costly to implement and it is of concern that the numbers of people attending SHSs because of partner notification has fallen since the start of the COVID-19 pandemic in 2020 and not recovered.

While GBMSM represent the group with the highest number of people with PrEP need, this group has much better outcomes in terms of the proportion having their need identified and starting PrEP, compared to heterosexual men and women, and across these 3 groups compared to ethnic minority populations, despite some improvements in the last year.

While the highest number of GBMSM ever tested was in 2022, testing levels among heterosexual men and women have not recovered to 2019 levels, prior to COVID-19 pandemic. Women eligible for HIV testing were less likely to be offered a test or accept a test compared to men. Although offer and uptake for black African women was slightly better than for non-black African women, uptake was still worse compared to men.  Furthermore, the higher proportion positive among black African heterosexual individuals means the potential to have missed diagnostic opportunities is much greater in this group. It is possible that the lower levels of HIV testing among women have led to a rise in late HIV diagnoses.

The opt-out BBV testing programme in ED settings has made a huge contribution in relation to the provision of HIV testing in areas of very high diagnosed HIV prevalence since April 2022. This has provided the opportunity to find people living with undiagnosed HIV who may not have attended SHSs or re-engage people with diagnosed HIV who may not be currently attending specialist HIV care. More work needs to be done to evaluate the effectiveness and cost effectiveness of linkage to care approaches for people newly diagnosed and re-engagement in care interventions for people re-diagnosed in this setting.

In a lower-level estimate, 14,934 people were living with transmissible levels of virus in 2022, of whom 43% are diagnosed but not retained in care. Between 2020 and 2022, the number of people estimated to be living with undiagnosed HIV in England has remained stable. In 2022, it is double outside London than the number of those living in the capital.

Linkage to care within 2 weeks of diagnosis has shown improvements since 2019, although there are still inequalities with a lower proportion linked to care in heterosexual men and women compared to GBMSM, as well as black ethnicities compared to other ethnicities. Linkage to care within 2 weeks is highest in London and the South and it is also concerning that it varies by setting of diagnosis, including in ED. There are also regional variations in proportions of people starting treatment within 3 months of diagnosis which were lowest in London and the North of England.

It is reassuring that the proportion of people living with diagnosed HIV and not retained in care remains at about 5% across groups between 2019 and 2022. The majority of GBMSM who are not retained in care are white, however, among heterosexual men and women, approximately two-thirds of those not retained in care are from ethnic minority groups.

Further work needs to be undertaken with people living with HIV and stakeholders to map out what is needed to prevent and manage co-morbidities in people living with HIV.

Whilst there have been some improvements in the measures of stigma in Positive Voice 2022 compared with Positive Voices 2017, stigma remains a prominent experience of people living with HIV. Regardless of stigma type, higher levels were reported among younger people, women and trans communities.

As we reach the later stages in ending transmission, our approach must be modified to ensure everyone benefits equally from interventions to end HIV transmission, AIDS and deaths. The tools we have to end transmission must be adapted so that they meet the needs of all populations in particular women and ethnic minority populations.  

If we are to meet our interim ambitions, the following areas must remain a priority:

• improving access to PrEP for all groups in need, in particular heterosexual men and women, and ethnic minorities in all groups whilst supporting patient choice in relation to preference of prevention methods
• strengthen partner notification and HIV testing numbers to exceed 2019 levels, especially among heterosexual men and women
• improve the offer and uptake of HIV testing among women who are eligible for testing, both in online and face-to-face settings
• ensure the roll out of opt-out testing in ED settings is accompanied by a strengthening of pathways into care, for those recently diagnosed and those previously diagnosed and not engaged in HIV care
• scale up research and interventions to improve re-engagement in care and support for those people not retained in care
• continue monitoring inequalities in HIV prevention and care to inform accessible and culturally-competent interventions

This report’s findings reinforce the need for targeting and prioritising key groups whilst maintaining robust prevention, treatment and care programmes for all. Working with and supporting populations for whom health inequalities exist, and for whom services are inaccessible, will be central to ensuring further progress is made in meeting our ambitions to end HIV transmission, AIDS diagnoses, and HIV related and preventable deaths.

Acknowledgements

Contributors: Addow A, Aghaizu A, Bera S, Birrell PJ, Brown AE, Buitendam E, Chadwick D, Chau C, Cooper N, Cox S, Davison K, De Angelis D, Ekajeh J, Farah A, Folkard K, Hamzaoui N, Harris R, Humphreys C, Kelly C, Kirwan PD, Kitt H, Kolawole T, Latham V, Macdonald C, Mackay N, Mandal S, Martin V, Miller R, Mitchell H, Mohammed H, Morgan J, Mou D, Murphy G, Neate K, Okumu-Camerra K, Ottaway P, Parmar S, Peaker K, Post F, Presanis AM, Ratna N, Reynolds C, Roche R, Saunders J, Shah A, Simmons R, Sinka K, Smeaton L, Stephenson I, Sullivan A, Underwood J, van Halsema C, Wilding M, Wilkinson G.

Suggested citation

Martin V, Okumu-Camerra K, Bera S, Shah A, Mackay N, Chau C, Ratna N, Aghaizu A, Humphreys C, Brown AE, and contributors. HIV Action Plan monitoring and evaluation framework 2023 report: Report summarising progress from 2019 to 2022. December 2023, UK Health Security Agency, London