Annual epidemiological spotlight on HIV in the North East: 2021 data
Updated 28 November 2024
Applies to England
Summary
HIV remains an important public health problem in the North East and although the region has a low prevalence of HIV compared to other England regions, the area faces its own challenges in HIV prevention and control.
The impact of the COVID-19 pandemic on sexual health services (SHSs) and patient access in England has made it difficult to interpret changes in the epidemiology of HIV and sexually transmitted infections (STIs) between 2019 and 2021. While the number of people tested and lost to follow up (the biggest impact of the COVID-19 pandemic) recovered slightly by 2021, this was not observed uniformly across populations and risk groups (1).
New diagnoses
In 2021, 85 North East residents were newly diagnosed with HIV, accounting for 3% of new diagnoses in England. This represents a rise of 5% from 2020 (60% decline compared to 2012 n=136). Nationally, there has been a long-term trend for a decline in the overall number of new diagnoses, although there was a slight upturn in 2021.
The new diagnosis rate for North East residents (3 per 100,000) was below that of England in 2021 (5 per 100,000).
In 2021, 49% of all new diagnoses in North East residents were in gay, bisexual and other men who have sex with men (GBMSM) (compared to 36% in 2020 and 57% in 2012). The number of GBMSM residents in the North East newly diagnosed with HIV (42, adjusted for missing information) was 46% lower than in 2012. Of the GBMSM newly diagnosed with HIV 78% were white and 67% were UK-born.
Heterosexual contact was the second largest infection route for new diagnoses in North East residents in 2021 (40%). Infections in African-born persons accounted for 42% of all heterosexually-acquired cases in 2021 (n=8), compared to 33% (n=16) in 2012. Infections in UK-born persons accounted for 53% of all heterosexually acquired cases in 2021.
Injecting drug use accounted for 2% of new diagnoses in North East residents.
The black African ethnic group represented 20% of all newly diagnosed North East residents in 2021 (compared to 23% in 2020 and 17% in 2012). A small proportion of new diagnoses in 2021 were in the black Caribbean ethnic group (2%).
The number of new diagnoses in 2021 was highest in the groups of:
- males aged 25 to 34 years
- females aged 35 to 44 years
Late diagnoses
People who are diagnosed late have a tenfold risk of mortality within one year of diagnosis compared to those diagnosed promptly, and they also have increased healthcare costs (2). Reducing late HIV diagnoses is one of the indicators in the Public Health Outcomes Framework.
It is of particular concern that a large proportion of North East residents with HIV are diagnosed late (40% from 2019 to 2021, compared to 43% in England), as defined by a CD4 count of less than 350 cells/mm3 at diagnosis.
In the North East, heterosexuals were more likely to be diagnosed late (41% of males, 32% of females) than GBMSM (34%). The black African ethnic group was less likely to be diagnosed late than the white ethnic group (36% and 45% respectively).
People living with diagnosed HIV
The 2,018 people living with diagnosed HIV in the North East in 2021 was 2% higher than 2020 and 37% higher than 2012. This increase is mainly due to the effectiveness of HIV treatment. Free and effective antiretroviral therapy (ART) has transformed HIV from a fatal infection into a chronic, manageable condition. People living with HIV in the UK can now expect to live into old age if diagnosed promptly. It is now widely understood that effective HIV treatment results in an ‘undetectable’ viral load which protects individuals living with HIV from passing on the virus to others. The key message is that Undetectable = Untransmittable (U=U). People with HIV who maintain an undetectable viral load for at least 6 months do not transmit HIV.
The diagnosed prevalence rate of HIV in the North East in 2021 was one per 1,000 residents aged 15 to 59 years. This was lower than the 2 per 1,000 observed in England as a whole. No local authorities in the North East had a diagnosed HIV prevalence rate in excess of 2 per 1,000 population aged 15 to 59 years in 2021, which is the threshold for expanded HIV testing.
In 2021, 40% of those living with diagnosed HIV in the North East were aged between 35 and 49 years, and 45% were aged 50 years and over (up from 26% in 2012). Males represented 74% of North East residents living with diagnosed HIV in 2021 and females represented 26%.
In 2021, 69% of North East residents living with diagnosed HIV were from the white ethnic group and 22% were from the black African ethnic group. However, due to the relative sizes of the white and black African ethnic group populations, the rate per 1,000 population aged 15 to 59 years was much higher in the black African ethnic group (19 per 1,000) than in the white ethnic group population (one per 1,000).
Continuum of HIV care
In England, excluding London in 2021, 99% of HIV diagnosed residents were receiving ART. Of these, 99% were virally suppressed (viral load <200) and were very unlikely to pass on HIV, even if having sex without condoms (untransmissible virus). This compares to 99% in England as a whole receiving ART and 99% of these virally suppressed.
For North East residents diagnosed in 2021, the proportion starting treatment within 91 days of diagnosis for the period 2019 to 2021 was 84%. This compares to 84% for England.
People living with undiagnosed HIV
In 2021, it is estimated that 5% (Credible Interval (CrI) 4% to 7%) of people living with HIV in England, excluding London were undiagnosed. This equates to an estimated 3,039 (CrI 2,305 to 4,410) undiagnosed people.
It is estimated that 1,000 GBMSM in England, outside London, are undiagnosed (CrI 500 to 1,900) and 1,900 heterosexuals (CrI 1,400 to 3,000), including 800 from the black African ethnic group. In England, outside London, the proportion undiagnosed varied by exposure group, with the highest proportion undiagnosed among people living with HIV who inject drugs (8%, CrI 1% to 27%), heterosexual women (8%, 6% to 12%) and heterosexual men (7%, 4% to 20%), excluding the black African ethnic group.
HIV testing
A total of 20,519 people were tested in specialist SHSs in the North East in 2021, a decrease of 50% since 2017. The HIV testing coverage at specialist SHSs in the North East was 44%, which compares to 46% across England. HIV testing coverage in specialist SHSs in the North East is higher in men (60%) than women (36%) and highest in GBMSM (75%).
Some HIV tests are performed in settings other than at SHSs; these include tests done through online consultations. It is not currently possible to include these in the HIV testing coverage measure. There are 2 reasons for this:
- online and other non-specialist SHSs are not mandated by the British Association of Sexual Health and HIV (BASHH) to offer an HIV test to everyone
- they may not code and report the outcome of an HIV test in their GUMCAD submissions
Internet testing was the main route of access to HIV testing in England in 2021 but was disproportionately accessed by GBMSM, especially outside London (1). Testing has recovered for GBMSM, with the number tested in England in 2021 (~180,000) exceeding that observed in 2019 (~160,000) (1). For other groups, the recovery of testing appears slower. In 2021, test offer rates in specialist SHSs remained at 2020 levels, lower than in 2019, especially for heterosexual men and heterosexual and bisexual women (1).
Since 2020, the proportion of HIV testing that takes place through online services has risen sharply. Consequently, clients may not be fully coded in relation to HIV testing if they were referred to online testing following triage by a specialist SHS, or they were referred to specialist SHS following online testing (where further testing, treatment or care was required). Work is ongoing to ensure that this activity is fully captured in future reports.
Pre-Exposure Prophylaxis (PrEP)
In 2021, 4% of HIV-negative North East residents accessing SHSs in England were defined as having PrEP need (7% nationally), among whom 53% initiated or continued PrEP (70% nationally). Of those with PrEP need, 65% had this need identified at a clinical consultation. Among GBMSM, the group with greatest need, these proportions were 51%, 58% and 69%. Consistent use of PrEP can be an efficacious and effective intervention to prevent HIV acquisition.
Despite PrEP being routinely available through specialist SHS, awareness, accessibility and uptake of primary prevention initiatives is variable for different population groups (3). Addressing this disparity is key to HIV prevention.
HIV Action Plan
The 2022 to 2025 HIV Action Plan (jointly developed by the Office for Health Improvement and Disparities (OHID) and UK Health Security Agency (UKHSA)) aims to reduce HIV transmission by 80% and HIV-related and preventable deaths and AIDS by 50% between 2019 and 2025 (3). This will be achieved by (3):
- ensuring equitable access and uptake of HIV prevention programmes
- scaling up HIV testing in line with national guidelines
- optimising rapid access to treatment and retention in care
- improving the quality of life for people living with HIV
- addressing stigma
While there has been considerable progress towards ending HIV transmission in the UK, the interim ambitions of the HIV Action Plan were adversely impacted by COVID-19 (4). To ensure the goals are reached, a number of prevention areas need to be prioritised, these include (3):
- PrEP access for all
- scaling up of partner notification
- increasing HIV testing among heterosexual men and women
- improving retention to care
- monitoring inequalities in all aspects of HIV prevention
The further ambition to achieve zero new HIV infections, AIDS and HIV-related deaths in England by 2030 will require significant improvement in diagnoses for heterosexuals and the black African ethnic group (3).
A North East HIV Action Plan Implementation Group, with colleagues from HIV Clinical Network, OHID, North East and North Cumbria Integrated Care Board (NE&NC ICB), the voluntary sector, Association of Directors of Public Health (ADPH), local authorities and UKHSA North East is being established to identify and address the priority areas for action.
Charts, tables and maps
Figure 1. New HIV diagnoses per 100,000 population (all ages) by UKHSA region of residence, 2021
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
Figure 1 is a bar graph showing that the North East rate of new HIV diagnoses (3.2 per 100,000) is the third lowest by UKHSA region and below the England rate in 2021.
Figure 2. New HIV diagnoses per 100,000 population (all ages) by upper tier local authority of residence, North East residents, 2021
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
Figure 2 is a bar graph showing Sunderland (8 per 100,000) having the highest rate of new HIV diagnoses and Northumberland (2 per 100,000) the lowest, in the North East. Sunderland, Middlesbrough, Redcar and Cleveland, Stockton, South Tyneside and Hartlepool had rates above the regional rate.
Figure 3. New HIV diagnoses and deaths, the North East, 2012 to 2021
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission. Numbers may rise as we receive more reports and more information. This will impact on interpretation of trends in more recent years. New HIV diagnoses are shown by UK region of residence at diagnosis. Deaths are also shown by UK region of residence at diagnosis which in some instances may not be the same as UK region of death. Deaths in people living with HIV may not be related to HIV in all cases, and this is likely to become increasingly true as people accessing treatment reach older ages. Charts in previous years’ reports showed deaths by region of death, rather than region of residence at diagnosis, and so the trend for deaths cannot be compared directly with that seen in earlier reports. Region of residence at diagnosis has been used for deaths due to better data quality in more recent years.
Figure 3 is a line graph showing the number of new HIV diagnoses in the North East in 2021 (85) was slightly higher compared to 2020 but below pre-pandemic years. The number of deaths (14) was slightly lower compared to 2020. In recent years, ascertainment of deaths has been enhanced by the National HIV Mortality Review. Additional deaths due to COVID-19 were reported during the pandemic in people living with HIV.
Figure 4. New HIV diagnoses by probable route of infection (adjusted for missing route of infection information), North East residents, 2012 to 2021 [note 1]
Asterisk (*) represents not previously diagnosed abroad (NPDA).
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
[note 1] Numbers may rise as further reports are received and more information is obtained on area of residence of those diagnosed. This is more likely to affect more recent year, particularly 2021. This will impact on interpretation of trends in more recent years.
Figure 4 is a line graph showing sex between men as the most common cause of new HIV diagnoses in the North East, followed by sex between men and women.
Figure 5a. Number of new HIV diagnoses by age group and gender, North East residents, 2021
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
Figure 5a shows the number of new HIV diagnoses were highest in the group of males aged 25 to 34 years and highest in the group of females aged 35 to 44 years. Forty percent of new diagnoses were made in people aged 45 years and over and 19% were 55 and over. No new HIV diagnoses were made in people under 15 years of age.
Figure 5b. Number of new HIV diagnoses by age group and probable route of infection, male North East residents aged 15 to 64 years, 2021
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
Figure 5b shows 56% of new HIV diagnoses in men to be attributable to ‘sex between men’ as probable route of infection. Of these diagnoses, 36% were in the 25 to 34 year age group, followed by 24% in 45 to 54 year age group. For ‘all other exposures’, the 45 to 54 year age group had the highest number of new diagnoses (36%).
Figure 6. Number of new HIV diagnoses by ethnic group (adjusted for missing ethnic group information), North East residents, 2012 to 2021 [note 2]
Asterisk (*) represents not previously diagnosed abroad (NPDA).
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
[note 2] Numbers may rise as further reports are received and more information is obtained on area of residence of those diagnosed. This is more likely to affect more recent year, particularly 2021. This will impact on interpretation of trends in more recent years.
Figure 6 is a line graph showing the highest number of new HIV diagnoses remained in the white ethnic group, with lower numbers of new diagnoses in ‘all other ethnic groups’ and the black African ethnic group.
Figure 7. Number of new HIV diagnoses by world region of birth (adjusted for missing world region of birth information), North East residents, 2012 to 2021 [note 3]
Asterisk (*) represents not previously diagnosed abroad (NPDA).
The number of new diagnoses will depend on accessibility of testing as well as infection and transmission.
[note 3] Numbers may rise as further reports are received and more information is obtained on area of residence of those diagnosed. This is more likely to affect more recent year, particularly 2021. This will impact on interpretation of trends in more recent years.
Figure 7 is a line graph showing the number of new HIV diagnoses by region of birth was highest in UK-born individuals, followed by African-born individuals.
Figure 8. Percentage of new HIV diagnoses by upper tier local authority of residence that were diagnosed late, North East, aged 15 years and over, 2019 to 2021 [note 4]
[note 4] Only includes new diagnoses in those aged 15 years or older with no prior diagnosis abroad and for which a CD4 count was reported within 91 days of diagnosis; late diagnosis defined as CD4 count <350 cells/mm3.
The underlying population will impact on the proportion diagnosed late, for example MSM are less likely to be diagnosed late.
Figure 8 is a bar graph showing the percentage of new HIV diagnoses that were diagnosed late in 2019 to 2021, was highest in Northumberland (60%) and lowest in Darlington (25%). Northumberland, Sunderland and Gateshead were above the region rate (40.1%). Percentages are calculated as the number of new HIV diagnoses diagnosed late divided by the number not diagnosed late per local authority. The numbers involved are relatively low.
Figure 9a. Percentage of new HIV diagnoses by probable route of infection that were diagnosed late, North East residents, aged 15 years and over, 2019 to 2021 [note 5]
[note 5] Only includes new diagnoses in those aged 15 years or older with no prior diagnosis abroad and for which a CD4 count was reported within 91 days of diagnosis; late diagnosis defined as CD4 count <350 cells/mm3. Proportions are only shown for the sex between men, heterosexual contact (males), heterosexual contact (females) and injecting drug use exposure groups and are withheld for any of these categories if they contain fewer than 5 late diagnoses.
Figure 9a is a bar graph showing that by probable route of infection, heterosexual contact (in males) had the highest percentage (41%) for new HIV diagnoses that were diagnosed late in North East residents.
Figure 9b. Percentage of new HIV diagnoses by ethnic group that were diagnosed late, North East residents, aged 15 years and over, 2019 to 2021 [note 6]
[note 6] Only includes new diagnoses in those aged 15 years or older with no prior diagnosis abroad and for which a CD4 count was reported within 91 days of diagnosis; late diagnosis defined as CD4 count <350 cells/mm3. Proportions are only shown for the white, black African and black Caribbean ethnic groups and are withheld for any of these ethnic group categories if they contain fewer than 5 late diagnoses.
Figure 9b is a bar graph showing the percentage of new HIV diagnoses that were diagnosed late was highest in black Caribbean. However, the total number diagnosed was small for this ethnic group and the number of new diagnoses made in North East residents was highest in the white ethnic group.
Figure 10. Percentage of new HIV diagnoses that were diagnosed late by probable route of infection and year of first UK HIV diagnosis, North East residents, aged 15 years and over, 2012 to 2021 [note 7]
[note 7] Only includes new diagnoses in those aged 15 years or older with no prior diagnosis abroad and for which a CD4 count was reported within 91 days of diagnosis; late diagnosis defined as CD4 count <350 cells/mm3.
Figure 10 is a line graph showing the percentage of new HIV diagnoses that were diagnosed late was highest in sex between men and women (58%), followed by sex between men (41%). This trend was the same in 2020 but reversed in 2019. It is likely that the COVID-19 pandemic impacted this trend due to changes in testing behaviour and availability.
Figure 11. Diagnosed HIV prevalence per 1,000 residents aged 15 to 59 years by UKHSA region, 2021
Figure 11 is a bar graph showing that diagnosed HIV prevalence by UKHSA region was lowest in the North East (1.1 per 1,000) and highest in London (5.4 per 1,000).
Figure 12. Number of residents living with diagnosed HIV and accessing care, the North East, 2012 to 2021
Figure 12 is a line graph showing an increasing trend in the number of North East residents living with diagnosed HIV from 2012 to 2021. This is due to advances in testing and HIV care.
Figure 13. Number of residents living with diagnosed HIV and accessing care by probable route of transmission (adjusted for missing information), the North East, 2021
Figure 13 is a bar graph showing the number of North East residents living with diagnosed HIV was highest in sex between men for probable route of transmission, followed by sex between men and women. Numbers were lowest among those whose likely transmission route was via injecting drug use, via blood or being a healthcare worker (HCW) or mother to child transmission.
Figure 14. Percentage of residents with diagnosed HIV and accessing care by age group, the North East, 2012 and 2021
Figure 14 is a bar graph showing that in all age groups, except those aged 50 years and over, the percentage of residents with diagnosed HIV and accessing care was lower in 2021 compared to 2012. This is largely due to higher numbers of new diagnoses in previous years compared to current, with those affected moving into older age groups and lower numbers of new diagnoses feeding into younger age groups.
Figure 15. Diagnosed HIV prevalence per 1,000 residents by ethnic group (all ages), the North East, 2021
Figure 15 is a bar graph showing that diagnosed HIV prevalence per 1,000 residents was highest in the black African (19.5) ethnic group and lowest in the white (0.5) and Asian (0.4) ethnic groups. Notably the North East has a small population of black African and black Caribbean ethnic groups.
Figure 16. Diagnosed HIV prevalence per 1,000 residents aged 15 to 59 years by local authority, the North East, 2021
Figure 16 is a bar graph showing diagnosed HIV prevalence per 1,000 residents (aged 15 to 59 years) in the North East was highest in Newcastle and lowest in Redcar and Cleveland. Prevalence in Newcastle, Gateshead, Middlesbrough, Darlington and North Tyneside were above the region rate (1.1).
Figure 17. Diagnosed HIV prevalence per 1,000 residents aged 15 to 59 years by local authority, the North East, 2021
Figure 17 is a map of the North East region showing Northumberland, South Tyneside, County Durham, Hartlepool and Redcar and Cleveland having a diagnosed HIV prevalence of under one per 1,000 population (15 to 59 years) and all other North East local authorities between 2 and 5 per 1,000 population.
Figure 18. The continuum of HIV care, England excluding London, 2021
Figure 18 is a bar graph showing 95% of people living with HIV are diagnosed, 99% of these are on treatment and 99% of these are virally suppressed within England (excluding London). These figures are above the UNIAIDS 90:90:90 target.
Figure 19. HIV test coverage by population group, North East residents, 2017 to 2021
Note, the proportion of eligible attendees at specialist SHSs who accepted a HIV test. An eligible attendee is defined as a patient attending specialist SHS at least once during a calendar year. Patients known to be HIV positive, or for whom a HIV test was not appropriate, or for whom the attendance was related to sexual and reproductive health (SRH) care only, are excluded.
Figure 19 is a line graph showing GBMSM to have the highest HIV test coverage in North East residents from 2017 to 2021. This is above the coverage for ‘all’ population groups. After a drop in coverage in 2020 attributable to restrictions during the COVID-19 pandemic, testing has picked up slightly in 2021 but remains below pre-pandemic coverage for all population groups. Test coverage currently only includes individuals attending SHSs.
Information on data sources
HIV and AIDS New Diagnoses and Deaths (HANDD) collects information on new HIV diagnoses, AIDS at diagnosis and deaths among people diagnosed with HIV. Information is received from laboratories, specialist SHSs, GPs and other services where HIV testing takes place in England, Wales and Northern Ireland. The Recent Infection Testing Algorithm (RITA) and CD4 surveillance scheme are linked to HANDD to assess trends in recent and late diagnoses. Data is deduplicated across regions and therefore figures may differ from country-specific data.
The Survey of Prevalent HIV Infections Diagnosed (SOPHID) began in 1995 and was a cross-sectional survey of all adults living with diagnosed HIV infection who attend for HIV care in England, Wales and Northern Ireland. SOPHID collected information about the individual’s place of residence along with epidemiological data including clinical stage and antiretroviral therapy (ART). In 2015, SOPHID reporting in England was replaced by the HIV & AIDS Reporting System (HARS) which captures information at every attendance for HIV care.
Date of data extract is January 2023. Updates to HANDD and SOPHID/HARS made after this date will not be reflected in this report.
Confidence intervals for rates in the figures have been calculated to the 95% level using the Byar’s method; confidence intervals for percentages have been calculated to the 95% level using the Wilson Score method (see APHO Public Health Guide). Confidence intervals presented in the text are produced by Bayesian analysis.
Office for National Statistics (ONS) mid-year estimates for 2020 were used as a denominator for rates for 2021.
The data behind charts showing absolute numbers has been adjusted for missing information. However, unless stated otherwise, the numbers in the summary section are the numbers as reported, that is unadjusted counts. Where charts are displaying adjusted data, this is indicated in the chart title.
The denominators for all percentages exclude records for which information was unknown, that is the proportion of new diagnoses where probable route of infection was sex between men would be calculated using new diagnoses for which route of infection was known as the denominator.
Except for deaths in Figure 3, all analyses in this report are residence-based. Information about a patient’s place of residence is not collected by HANDD. Reports to this database are cross-linked to the database of people accessing care for HIV, HARS.
Numbers may change as more information becomes available to assign area of residence to cases and historical data is refreshed accordingly.
Further information
For further information, access the Sexual and Reproductive Health Profiles.
Find more information on local sexual health data sources on GOV.UK.
Find more information in Sexually transmitted infections: North East data
Find more information in the national HIV report: 2021.
Local authorities have access to additional HIV and STI intelligence via the Data Exchange and the HIV and STI web portal. They should also have received a set of tables containing HIV data specific to their authority. They should contact geraldine.leong@ukhsa.gov.uk if they do not have access to this information.
About the Field Service
The Field Service was established in 2018 as a national service comprising geographically dispersed multi-disciplinary teams integrating expertise in Field Epidemiology, Real-time Syndromic Surveillance, Public Health Microbiology and Food, Water and Environmental Microbiology to strengthen the surveillance, intelligence and response functions of UKHSA.
You can contact your local Field Service team at FES.NorthEast@ukhsa.gov.uk
If you have any comments or feedback regarding this report or the Field Service, contact josh.forde@ukhsa.gov.uk
Acknowledgements
We would like to thank:
- local sexual health and HIV clinics for supplying the HIV data
- the Institute of Child Health
- UKHSA Centre for Infectious Disease Surveillance and Control (CIDSC) HIV and STI surveillance teams for collection, analysis and distribution of data
References
1. Lester J, Martin V, Shah A, Chau C, Mackay N, Newbigging-Lister A and others. HIV testing, PrEP, new HIV diagnoses, and care outcomes for people accessing HIV services The annual official statistics data release (data to end of December 2021) 2022
2. Byrne R, Curtis H, Sullivan A, Freedman A, Chadwick D and Burns F. A National Audit of late diagnosis of HIV: action taken to review previous healthcare among individuals with advanced HIV; 2018 British HIV Association
3. Department of Health and Social Care UK. Towards Zero – An action plan towards ending HIV transmission, AIDS and HIV-related deaths in England – 2022 to 2025 UK Government White Paper 2022
4. Martin V, Lester J, Adamson L, Shah A, Mackay N, Chau C and others. HIV Action Plan Monitoring and Evaluation Framework: Report summarising progress from 2019 to 2021 2022