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The United Nations has a goal to end AIDS by 2030 with targets of 95% of all people with HIV diagnosed, 95% on treatment and 95% having a suppressed viral load—and for these targets to be achieved within all sub-populations and groups.[[1]] This is particularly challenging in countries with a concentrated epidemic, such as among gay and bisexual men (GBM), who are often the priority group for reaching the goal. Other groups affected by HIV, who sometimes constitute small numbers of people, also require attention.

Aotearoa New Zealand is a low HIV prevalence country, with the epidemic largely concentrated in GBM.[[2]] Women in low-prevalence countries are often perceived as being at low risk for HIV infection by both themselves and medical professionals,[[3]] which results in less testing, late diagnosis[[4,5]] and barriers to treatment and support services.[[3,6]] Each of these are contributing factors towards the increased risk of HIV progressing to an AIDS diagnosis and poorer long-term outcomes.[[5,7]] Stigma and discrimination can also lead to hesitancy to test.[[6,8]] Once diagnosed, women can feel socially isolated particularly if HIV support services are mostly designed for gay men.[[6]]

Women living with HIV also have particular needs in the areas of sexual and reproductive health, clinical management and emotional wellbeing.[[3,9,10]] New Zealand has a network of Infectious Disease Specialists, based mostly in the large urban centres, where people diagnosed with HIV are referred to for treatment. Some of these centres also have a team of HIV nurse specialists, social workers and access to other allied health professionals for the care and support of patients. Positive Women Incorporated was established in 1990 to support and empower women and their families living with or affected by HIV and to provide services unique to women. More recently, Toitū te Ao was established as a Kaupapa Māori organisation to support and uphold the mana of Māori women living with HIV.

New Zealand aims to eliminate local transmission of HIV.[[11]] The total number of people diagnosed with HIV each year has been declining since 2016,[[12]] but to reach the goal it is important to tailor HIV testing, treatment and support services to those who need them most. To date there is a lack of published data on women diagnosed and living with HIV to guide the response. We therefore describe the characteristics of women diagnosed with HIV and AIDS over the last 25 years and women thought to be living with HIV in New Zealand at the end of 2020.

Methods

Data sources

Since 1996, the AIDS Epidemiology Group (AEG) at the University of Otago has undertaken enhanced surveillance of HIV, whereby anonymous information on individuals newly diagnosed with HIV in New Zealand has been sought from the clinician who requested the HIV confirmatory test. From 2002, data have also been received from laboratories performing HIV viral load (VL) testing in order to capture information on people living with HIV in New Zealand who had their initial HIV diagnosis overseas. From 2017, HIV became notifiable under the Health (Protection) Amendment Act 2016.

In New Zealand, an individual with HIV infection is defined as having AIDS when they first develop one of a number of specific AIDS-defining conditions.[[13]] Clinicians diagnosing AIDS are required to notify the case using unnamed coded information, and to complete a case report.

Information on women known to be infected with HIV who give birth has been collected by the AEG via the New Zealand Paediatric Surveillance Unit since 1998.

Definitions

Women diagnosed with HIV include all women (including transgender) diagnosed in New Zealand since the beginning of 1996 to the end of 2020. This excludes women who were previously diagnosed overseas.

The estimated number of women living with diagnosed HIV in New Zealand at the end of 2020 includes women first diagnosed in New Zealand between the years 1996 and 2020, as well as those previously diagnosed overseas and notified to the AEG through VL testing, for whom no information has been received to say they had died or gone overseas.

Variables and analysis

From the AEG database, demographic data for women include age and place of residence at the time of diagnosis, current age (calculated as at the end of December 2020), and prioritised ethnicity.[[14]] Mode of acquisition was categorised into heterosexual contact, injecting drug use (IDU) (including women for whom both IDU and heterosexual contact were reported as possible modes of acquisition), mother-to-child transmission and other or not reported. Place of likely acquisition was categorised as New Zealand, overseas or unknown. Clinical data included the site of, and reason for testing, sexual partner’s risk status, previous negative HIV test, and CD4 cell count (available since 2005) categorised to <350 cells/mm³ and 350+ with a CD4 cell count of less than 350 considered a late diagnosis.[[15]] The characteristics of women diagnosed in New Zealand are presented in two time periods (1996–2010 and 2011–2020) to identify and describe any change over these years. Descriptive analysis was undertaken using Stata SE Version 17. Denominator data for the rate of women diagnosed with HIV was the estimated resident all-female population as in December each year, and for women living with diagnosed HIV the denominator was the estimated resident female population aged 15 and over as in December 2020.[[16]]

Results

Women diagnosed in New Zealand

A total of 634 women (18 of whom were transgender) were newly diagnosed with HIV in New Zealand over the 25 years from 1996 to the end of December 2020—18% of all diagnoses in this time. The main mode of acquisition was heterosexual contact (82%). Most women (76%) were aged less than 40 years at the time of diagnosis, however, in the past 10 years the proportion of women aged >40 years at the time of diagnosis has increased (37% compared to 19% between 1996 and 2010) (Table 1).

Almost half of the women (42%) were residing in the Northern region (wider Auckland and Northland District Health Board areas) at the time of diagnosis. The main site of HIV testing was at a general practice (40%) and the main reasons for testing were because of symptoms (19%), or a history of risk (14%). Overall, 13% tested as part of immigration screening and 14% refugee screening. The latter declined from 17% in 1996–2010 to 7% in 2011–2020. Forty three (7%) women were diagnosed through antenatal testing—32 after the introduction of routine antenatal screening in 2006.

The majority (73%) of women diagnosed in the earlier years had acquired HIV overseas (Figure 1) and were mostly of African (52%) or Asian (19%) ethnicity (Table 1). The 3-year average shows a sharp rise to 2005–2007 followed by a rapid decline. In the last 10 years (2011–2020), there has been a similar number of women acquiring HIV overseas and in New Zealand (Figure 1) with wider representation from different ethnic groups (Table 1). The average annual rate of all women diagnosed in the 15 years from 1996 to 2010 was 1.43 per 100,000 females and in the past 10 years almost halved to 0.80 per 100,000.

View Figures & Tables.

Women with HIV acquired in New Zealand

Table 2 shows the age, ethnicity, sexual partner’s risk status, previous negative test, and CD4 count information of the 180 women (including 14 transgender) who were reported to have acquired HIV in New Zealand between 1996 and 2020 (10% of all locally acquired HIV diagnoses in this time). The ethnicity of these women differs from that of the overall group diagnosed in New Zealand, with a greater proportion being Māori (20%) or of European (41%) ethnicity. The age is similar to the overall group diagnosed in New Zealand, and there was a greater proportion of older women diagnosed in 2011–2020 (33/82; 40%) than in 1996–2010 (19/98; 19%). Since 2005 (when CD4+ count information was first collected), 43% had a CD4 count less than 350 cells/mm³ at the time of diagnosis and were therefore considered a late diagnosis. Only a third had ever had a previous HIV test. Of the 14 transgender people, 5 were Māori, 4 European and 5 Pasifika or other ethnicity. Two had a CD4 count less than 350 cells/mm³ at the time of diagnosis, and 4 had had a previous negative HIV test.

Women diagnosed with AIDS

A total of 128 women were diagnosed with AIDS (Table 3), an average of 6.2 women per year in the years 1996 to 2010, and 3.5 women per year between 2011 and 2020 (Figure 2). Māori women made up 11% of women diagnosed with AIDS, 27% Asian, 35% Middle Eastern, Latin American or African, 21% European, and 6% Pasifika. The most common clinical indicator of AIDS was an opportunistic infection (67%) such as pneumocystis pneumonia, oesophageal candidiasis and cerebral toxoplasmosis. Tuberculosis was frequently reported in the earlier years between 1996 and 2010 (n=27/93; 29%) but has reduced considerably since then (n=3/35; 9%). The mean age at the time of an AIDS diagnosis was 40 years (standard deviation 12.85 years). Seventy-two percent (n=92) had an AIDS diagnosis within three months of their HIV diagnosis and were therefore considered a late diagnosis of HIV (Table 3). A total of 33 women have died from AIDS over the 25 years (Figure 2).

Women living with diagnosed HIV

Of the women who had been notified with HIV between 1996 and 2020 (either diagnosed in New Zealand or previously diagnosed overseas), 184 had died (n=42) or gone overseas (n=142), leaving an estimated 570 living with diagnosed HIV in New Zealand at the end of 2020 (27.3 per 100,000 females aged 15 and over). Three quarters (77%) are aged 40 or more, and over a third (38%) are aged over 50 years. African (39%), European (22%) and Asian (20%) women make up the greatest proportion, followed by Māori (6%) and Pasifika (6%). The main mode of acquisition was heterosexual contact (78%), mother-to-child transmission (3%), injecting drug use (2%) and for the remainder the mode was unknown or not reported. Nineteen are transgender women.

Births to women with diagnosed HIV

Between 1998 and 2020, 192 children were born in New Zealand to women with diagnosed HIV. None of these children have been infected with HIV. The majority of women (82%) were diagnosed before their pregnancy, and 34 (18%) diagnosed during their pregnancy. Almost all of the women received antiretroviral treatment (97%). Delivery was by caesarean section for 53% and vaginal delivery for 46%. The majority of women did not breastfeed their children (95%).

Discussion

From routine surveillance data we have shown that the number of women diagnosed with HIV in New Zealand has remained low over the past 25 years, particularly women who acquired HIV in this country. Of concern, however, is the high proportion of women who were diagnosed late. Women living with diagnosed HIV in New Zealand are predominantly older and ethnically diverse.

A strength of our study is the use of national surveillance data collected consistently over a long period of time. Overall, there has been a high return of case report forms from clinicians in this time (89%), however, data are incomplete for some specific questions such as assessment of risk history. Information was obtained from clinicians at the time of diagnosis therefore some data such as the place of residence and whether women are still living in New Zealand may have subsequently changed.

The number of women diagnosed in New Zealand in the earlier years was mostly women who acquired HIV overseas—largely from high HIV prevalence countries in sub-Saharan Africa. Changes to the immigration policy in 2005[[17]] included introducing HIV testing as part of the visa requirements and is the likely reason for the subsequent decline. The average annual rate of all women diagnosed with HIV in the past 10 years (0.80 per 100,000 female population) has remained steady and is similar to Australia (0.83).[[18]] However, most Western European countries, for example the United Kingdom (4.49), Denmark (2.04) and Germany (1.42),[[19]] reported higher rates most likely due to a high proportion of people originating from a country outside of where they were diagnosed. The New Zealand visa requirements were recently reviewed in October 2021 and HIV was removed from the list of medical conditions deemed likely to impose considerable costs to the health system.[[20]] HIV testing remains a requirement for visa applicants intending to stay for more than 12 months, with applications from people with HIV to be considered on a case-by-case basis. Continued surveillance is essential to show how these changes in immigration might impact on the overall number of people notified with HIV in New Zealand and whether there is any increase in women first diagnosed overseas but requiring care in New Zealand.

The HIV epidemic in New Zealand has been concentrated in GBM,[[2]] with women making up only 10% of locally acquired infection. About half of these infections have been from sexual contact with a partner traditionally considered to be at high risk such as a bisexual man, a person from a high prevalence country or a person who injects drugs. Such high risk is potentially reduced in the current era of prevention referred to as “Undetectable=Untransmissable” (U=U)[[21]] whereby the risk of transmitting HIV sexually from a person living with HIV who has an undetectable viral load is negligible.[[22]] To be undetectable, however, depends on a high level of people testing for HIV and adherence to HIV treatment in those who are diagnosed. Prevention of HIV in women therefore depends on overall national prevention and control strategies.

Of some initial concern was that 20% of women with locally acquired HIV were Māori, which is higher than the 16% of Māori women aged 15–64 years in the population. However, after removing the five Māori transgender women from this group, the proportion is reduced to 17%. This constitutes 31 women over a 25-year period—approximately one Māori woman per year. To reach the goal of elimination of transmission of HIV in Māori women, and to support Māori women living with HIV in New Zealand, the articles of Te Tiriti o Waitangi need to be upheld, including kāwanatanga (ensuring meaningful representation and participation at all levels), tino rangatiratanga (self-determination), and ōritetanga (ensuring equity between Māori and other citizens of New Zealand).[[23]]

Almost half of the women who acquired HIV in New Zealand were diagnosed late. Similar rates of late diagnosis amongst women have also been reported in Australia (24% in Australian born; 51% in overseas born women),[[6]] Western Europe (54%),[[5]] and the United Kingdom (51%).[[24]] An analysis of late diagnosis of people diagnosed with HIV in New Zealand from 2011–2020 showed minimal reduction in the proportion of late diagnosis in women from the previous period of 2005–2010. The main risk factors for late diagnosis in both heterosexual women and men were older age (40+) and being of an ethnic group other than European (unpublished data). New Zealand has no specific guidelines for HIV testing in women—apart from the universal offer of testing for all pregnant women, through which 32 women have been diagnosed since its introduction in 2006. Instead, women are included in the overall recommendations for testing that are in accordance with the 2006 US Centers for Disease Control.[[25]] These aim to promote more frequent testing and to “normalise” testing but still recommend testing for persons who are considered high risk and those seeking assessment for sexually transmitted infections (STIs).[[26,27]] For almost half of the women in our database, however, the risk status of their partner was unknown or not reported, which has been a reason for late diagnosis in other studies.[[28,29]] The number of women diagnosed late, and the small proportion who had a recent previous HIV test, indicates that more needs to be done to raise awareness of HIV testing among healthcare providers and among women themselves. Moreover, increasing age at the time of diagnosis, as seen in our data, has been reported in other countries. Reasons for this are varied, such as change in risk behaviour patterns, health-seeking behaviour, testing programmes and patterns, levels of stigma and low perceptions of risk by healthcare providers, particularly for older women.[[5,8,30]] Further research is required to understand testing rates and patterns in New Zealand that could guide further testing policies and other possible testing options and sites; for example, opportunistic testing in different types of healthcare settings such as gynaecology clinics, emergency departments, or primary care, and greater access to free HIV and other testing for sexually transmitted infections.

The number of women diagnosed with AIDS has been consistently low and declined even further in the past 10 years—a trend also seen in other high-income countries.[[19]] While this is encouraging, it would be possible to see no AIDS diagnoses in New Zealand if women are tested and diagnosed early.

Women currently living with diagnosed HIV in New Zealand are of diverse ethnicities and are mostly aged over 40. PHARMAC (the Pharmaceutical Management Agency responsible for government subsidised medications including ART) reported 453 women on subsidised ART in mid-June 2020. Our estimated number of 570 women currently living with HIV is likely to be an overestimate as those who have moved overseas since diagnosis cannot be completely ascertained, but could also reflect barriers to access to treatment for some women, especially non-European.[[23,29,31]] To uphold tino rangatiratanga for Māori women and provide culturally appropriate services to women of diverse ethnic backgrounds is essential for overcoming such barriers. Meeting the changing needs of women as they age is also important.[[10]] Further research is needed to assess how these needs are being met in New Zealand.

The risk of mother-to-child transmission of HIV is markedly reduced by antiretroviral treatment (ART) and having a suppressed viral load.[[32]] HIV antenatal screening is therefore vital for ensuring women know their status and have the opportunity to receive ART. A total of 192 women diagnosed with HIV have given birth in New Zealand since the beginning of routine surveillance in 1998, 34 of whom were diagnosed during their pregnancy, and none of these children have been infected with HIV. Implementation of universal, opt-out antenatal testing of HIV began in 2006 and since 2007 there have been no children with perinatally acquired HIV born in New Zealand, giving testament to the importance of ensuring this screening is maintained to a high standard and is accessible to all women.

In conclusion, it is to be acknowledged that the number of women diagnosed in New Zealand has remained low. More work, however, is required to prevent late diagnosis by ensuring timely and accessible testing, diagnosis and access to treatment that aligns and partners with Māori women and women of other key affected ethnic groups, as well as transgender women.

Summary

Abstract

Aim

We describe the characteristics of women diagnosed with HIV and AIDS in Aotearoa New Zealand over the last 25 years, and of women living with HIV in New Zealand in order to guide the response for HIV prevention and care.

Method

Data on women diagnosed with HIV and AIDS in New Zealand (1996–2020) were collected through routine surveillance case reports from healthcare providers. CD4 cell count <350 cells/mm³ was considered a late diagnosis. Women living with HIV by 31 December 2020 included those first diagnosed in New Zealand and those previously diagnosed overseas.

Results

A total of 634 women have been diagnosed with HIV (18% of all diagnoses in this time): most cases were acquired through heterosexual contact (82%). Twenty-eight percent (n=180/634) acquired HIV in New Zealand, of whom 43% were diagnosed late. AIDS was diagnosed in 128 women (72% within three months of HIV diagnosis). An estimated 570 women (77% aged >40 years) were living with diagnosed HIV at the end of 2020.

Conclusion

The number of women diagnosed with HIV each year in New Zealand has remained steady over recent years. More timely testing and diagnosis is essential to ensure women with HIV have access to appropriate treatment and support.

Author Information

Ashleigh de Gouw: Research Assistant, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Susan McAllister: AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Jane Bruning: National Coordinator, Positive Women Inc., Auckland. Judith Mukakayange: Burnett Foundation, Auckland. Jerram Bateman: Research Fellow, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Patricia Priest: Epidemiological Advisor, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin.

Acknowledgements

The AIDS Epidemiology Group at the University of Otago is funded by the Ministry of Health to undertake epidemiological surveillance of HIV infection and AIDS in New Zealand. The authors wish to acknowledge Milly Stewart from Toitū te Ao for her input and advice on this paper.

Correspondence

Sue McAllister: Department of Preventive and Social Medicine, University of Otago, PO Box 56, Dunedin 9054.

Correspondence Email

sue.mcallister@otago.ac.nz

Competing Interests

Nil.

1)      UNAIDS. 2025 AIDSTargets: Putting people living with HIV and communities at risk at the centre 2022.Available from: https://aidstargets2025.unaids.org/assets/images/prevailing-against-pandemics_en.pdf.

2)      Saxton PJW, McAllisterSM, Thirkell CE, et al. Population rates of HIV, gonorrhoea and syphilis diagnosesby sexual orientation in New Zealand. Sex Transm Infect. 2022;98(5):376-379 doi:10.1136/sextrans-2021-055186.

3)      Kowalska J, Aebi‐PoppK, Loutfy M, et al. Promoting high standards of care for women living with HIV:position statement from the Women Against Viruses in Europe Working Group. HIV Med.2018;19(2):167-73. doi:10.111/hiv.12565.

4)      Dickson N, McAllisterS, Sharples K, Paul C. Late presentation of HIV infection among adults in New Zealand:2005–2010. HIV Med. 2012;13(3):182-9. doi:10.111/j.1468-1293.2011.00959.x.

5)      Mårdh O, Quinten C,Kuchukhidze G, et al. HIV among women in the WHO European Region - epidemiologicaltrends and predictors of late diagnosis, 2009-2018. Euro Surveill. 2019;24(48):1900696.doi: 10.2807/1560-7917.ES.2019.24.48.1900696.

6)      Moreira C, BougheyA, Ryan KE, et al. Two decades of surveillance data show late presentation amonga diverse group of women diagnosed with HIV in Victoria, Australia. Aust NZ J PublicHealth. 2019;43(5):413-418. doi:10.1111/1753-6405.12910.

7)      May M, Gompels M,Delpech V, et al. Impact of late diagnosis and treatment on life expectancy in peoplewith HIV-1: UK Collaborative HIV Cohort (UK CHIC) Study. BMJ. 2011;343:d6016. doi:10.1136/bmj.d6016.

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11)   New Zealand Government.Government sets out plan to eliminate HIV transmission in New Zealand. Press release2022 Jul 30. Available from: https://www.beehive.govt.nz/release/government-sets-out-plan-eliminate-hiv-transmission-new-zealand.

12)   AIDS EpidemiologyGroup. AIDS New Zealand 2022. Issue 81. Available from: https://www.otago.ac.nz/aidsepigroup/otago827752.pdf.

13)   Centers for DiseaseControl and Prevention. AIDS-Defining Conditions. Morbidity and Mortality WeeklyReport. 2008;57(RR10);9.

14)   Ministry of Health.HISO 10001:2017 Ethnicity Data Protocols Wellington: Ministry of Health; 2017. Availablefrom: https://www.health.govt.nz/system/files/documents/publications/hiso_10001-2017_ethnicity_data_protocols_21_apr.pdf.

15)   Antinori A, CoenenT, Costagiola D, et al. Late presentation of HIV infection: a consensus definition.HIV Med. 2011;12(1):61-4. doi:10.1111/j.1468-1293.2010.00857.x.

16)   Statistics New Zealand.Infoshare 2022. Available from: https://infoshare.stats.govt.nz/default.aspx?AspxAutoDetectCookieSupport=1.

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20)    Immigration New Zealand. Removal of HIV infection fromthe list of high-cost medical conditions. Visa Pak Issue 491. 2021. Available from: https://www.immigration.govt.nz/documents/visa-paks/3-december-2021-removal-of-hiv-infection-from-the-list-of-high-cost-medical-conditions.pdf.

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The United Nations has a goal to end AIDS by 2030 with targets of 95% of all people with HIV diagnosed, 95% on treatment and 95% having a suppressed viral load—and for these targets to be achieved within all sub-populations and groups.[[1]] This is particularly challenging in countries with a concentrated epidemic, such as among gay and bisexual men (GBM), who are often the priority group for reaching the goal. Other groups affected by HIV, who sometimes constitute small numbers of people, also require attention.

Aotearoa New Zealand is a low HIV prevalence country, with the epidemic largely concentrated in GBM.[[2]] Women in low-prevalence countries are often perceived as being at low risk for HIV infection by both themselves and medical professionals,[[3]] which results in less testing, late diagnosis[[4,5]] and barriers to treatment and support services.[[3,6]] Each of these are contributing factors towards the increased risk of HIV progressing to an AIDS diagnosis and poorer long-term outcomes.[[5,7]] Stigma and discrimination can also lead to hesitancy to test.[[6,8]] Once diagnosed, women can feel socially isolated particularly if HIV support services are mostly designed for gay men.[[6]]

Women living with HIV also have particular needs in the areas of sexual and reproductive health, clinical management and emotional wellbeing.[[3,9,10]] New Zealand has a network of Infectious Disease Specialists, based mostly in the large urban centres, where people diagnosed with HIV are referred to for treatment. Some of these centres also have a team of HIV nurse specialists, social workers and access to other allied health professionals for the care and support of patients. Positive Women Incorporated was established in 1990 to support and empower women and their families living with or affected by HIV and to provide services unique to women. More recently, Toitū te Ao was established as a Kaupapa Māori organisation to support and uphold the mana of Māori women living with HIV.

New Zealand aims to eliminate local transmission of HIV.[[11]] The total number of people diagnosed with HIV each year has been declining since 2016,[[12]] but to reach the goal it is important to tailor HIV testing, treatment and support services to those who need them most. To date there is a lack of published data on women diagnosed and living with HIV to guide the response. We therefore describe the characteristics of women diagnosed with HIV and AIDS over the last 25 years and women thought to be living with HIV in New Zealand at the end of 2020.

Methods

Data sources

Since 1996, the AIDS Epidemiology Group (AEG) at the University of Otago has undertaken enhanced surveillance of HIV, whereby anonymous information on individuals newly diagnosed with HIV in New Zealand has been sought from the clinician who requested the HIV confirmatory test. From 2002, data have also been received from laboratories performing HIV viral load (VL) testing in order to capture information on people living with HIV in New Zealand who had their initial HIV diagnosis overseas. From 2017, HIV became notifiable under the Health (Protection) Amendment Act 2016.

In New Zealand, an individual with HIV infection is defined as having AIDS when they first develop one of a number of specific AIDS-defining conditions.[[13]] Clinicians diagnosing AIDS are required to notify the case using unnamed coded information, and to complete a case report.

Information on women known to be infected with HIV who give birth has been collected by the AEG via the New Zealand Paediatric Surveillance Unit since 1998.

Definitions

Women diagnosed with HIV include all women (including transgender) diagnosed in New Zealand since the beginning of 1996 to the end of 2020. This excludes women who were previously diagnosed overseas.

The estimated number of women living with diagnosed HIV in New Zealand at the end of 2020 includes women first diagnosed in New Zealand between the years 1996 and 2020, as well as those previously diagnosed overseas and notified to the AEG through VL testing, for whom no information has been received to say they had died or gone overseas.

Variables and analysis

From the AEG database, demographic data for women include age and place of residence at the time of diagnosis, current age (calculated as at the end of December 2020), and prioritised ethnicity.[[14]] Mode of acquisition was categorised into heterosexual contact, injecting drug use (IDU) (including women for whom both IDU and heterosexual contact were reported as possible modes of acquisition), mother-to-child transmission and other or not reported. Place of likely acquisition was categorised as New Zealand, overseas or unknown. Clinical data included the site of, and reason for testing, sexual partner’s risk status, previous negative HIV test, and CD4 cell count (available since 2005) categorised to <350 cells/mm³ and 350+ with a CD4 cell count of less than 350 considered a late diagnosis.[[15]] The characteristics of women diagnosed in New Zealand are presented in two time periods (1996–2010 and 2011–2020) to identify and describe any change over these years. Descriptive analysis was undertaken using Stata SE Version 17. Denominator data for the rate of women diagnosed with HIV was the estimated resident all-female population as in December each year, and for women living with diagnosed HIV the denominator was the estimated resident female population aged 15 and over as in December 2020.[[16]]

Results

Women diagnosed in New Zealand

A total of 634 women (18 of whom were transgender) were newly diagnosed with HIV in New Zealand over the 25 years from 1996 to the end of December 2020—18% of all diagnoses in this time. The main mode of acquisition was heterosexual contact (82%). Most women (76%) were aged less than 40 years at the time of diagnosis, however, in the past 10 years the proportion of women aged >40 years at the time of diagnosis has increased (37% compared to 19% between 1996 and 2010) (Table 1).

Almost half of the women (42%) were residing in the Northern region (wider Auckland and Northland District Health Board areas) at the time of diagnosis. The main site of HIV testing was at a general practice (40%) and the main reasons for testing were because of symptoms (19%), or a history of risk (14%). Overall, 13% tested as part of immigration screening and 14% refugee screening. The latter declined from 17% in 1996–2010 to 7% in 2011–2020. Forty three (7%) women were diagnosed through antenatal testing—32 after the introduction of routine antenatal screening in 2006.

The majority (73%) of women diagnosed in the earlier years had acquired HIV overseas (Figure 1) and were mostly of African (52%) or Asian (19%) ethnicity (Table 1). The 3-year average shows a sharp rise to 2005–2007 followed by a rapid decline. In the last 10 years (2011–2020), there has been a similar number of women acquiring HIV overseas and in New Zealand (Figure 1) with wider representation from different ethnic groups (Table 1). The average annual rate of all women diagnosed in the 15 years from 1996 to 2010 was 1.43 per 100,000 females and in the past 10 years almost halved to 0.80 per 100,000.

View Figures & Tables.

Women with HIV acquired in New Zealand

Table 2 shows the age, ethnicity, sexual partner’s risk status, previous negative test, and CD4 count information of the 180 women (including 14 transgender) who were reported to have acquired HIV in New Zealand between 1996 and 2020 (10% of all locally acquired HIV diagnoses in this time). The ethnicity of these women differs from that of the overall group diagnosed in New Zealand, with a greater proportion being Māori (20%) or of European (41%) ethnicity. The age is similar to the overall group diagnosed in New Zealand, and there was a greater proportion of older women diagnosed in 2011–2020 (33/82; 40%) than in 1996–2010 (19/98; 19%). Since 2005 (when CD4+ count information was first collected), 43% had a CD4 count less than 350 cells/mm³ at the time of diagnosis and were therefore considered a late diagnosis. Only a third had ever had a previous HIV test. Of the 14 transgender people, 5 were Māori, 4 European and 5 Pasifika or other ethnicity. Two had a CD4 count less than 350 cells/mm³ at the time of diagnosis, and 4 had had a previous negative HIV test.

Women diagnosed with AIDS

A total of 128 women were diagnosed with AIDS (Table 3), an average of 6.2 women per year in the years 1996 to 2010, and 3.5 women per year between 2011 and 2020 (Figure 2). Māori women made up 11% of women diagnosed with AIDS, 27% Asian, 35% Middle Eastern, Latin American or African, 21% European, and 6% Pasifika. The most common clinical indicator of AIDS was an opportunistic infection (67%) such as pneumocystis pneumonia, oesophageal candidiasis and cerebral toxoplasmosis. Tuberculosis was frequently reported in the earlier years between 1996 and 2010 (n=27/93; 29%) but has reduced considerably since then (n=3/35; 9%). The mean age at the time of an AIDS diagnosis was 40 years (standard deviation 12.85 years). Seventy-two percent (n=92) had an AIDS diagnosis within three months of their HIV diagnosis and were therefore considered a late diagnosis of HIV (Table 3). A total of 33 women have died from AIDS over the 25 years (Figure 2).

Women living with diagnosed HIV

Of the women who had been notified with HIV between 1996 and 2020 (either diagnosed in New Zealand or previously diagnosed overseas), 184 had died (n=42) or gone overseas (n=142), leaving an estimated 570 living with diagnosed HIV in New Zealand at the end of 2020 (27.3 per 100,000 females aged 15 and over). Three quarters (77%) are aged 40 or more, and over a third (38%) are aged over 50 years. African (39%), European (22%) and Asian (20%) women make up the greatest proportion, followed by Māori (6%) and Pasifika (6%). The main mode of acquisition was heterosexual contact (78%), mother-to-child transmission (3%), injecting drug use (2%) and for the remainder the mode was unknown or not reported. Nineteen are transgender women.

Births to women with diagnosed HIV

Between 1998 and 2020, 192 children were born in New Zealand to women with diagnosed HIV. None of these children have been infected with HIV. The majority of women (82%) were diagnosed before their pregnancy, and 34 (18%) diagnosed during their pregnancy. Almost all of the women received antiretroviral treatment (97%). Delivery was by caesarean section for 53% and vaginal delivery for 46%. The majority of women did not breastfeed their children (95%).

Discussion

From routine surveillance data we have shown that the number of women diagnosed with HIV in New Zealand has remained low over the past 25 years, particularly women who acquired HIV in this country. Of concern, however, is the high proportion of women who were diagnosed late. Women living with diagnosed HIV in New Zealand are predominantly older and ethnically diverse.

A strength of our study is the use of national surveillance data collected consistently over a long period of time. Overall, there has been a high return of case report forms from clinicians in this time (89%), however, data are incomplete for some specific questions such as assessment of risk history. Information was obtained from clinicians at the time of diagnosis therefore some data such as the place of residence and whether women are still living in New Zealand may have subsequently changed.

The number of women diagnosed in New Zealand in the earlier years was mostly women who acquired HIV overseas—largely from high HIV prevalence countries in sub-Saharan Africa. Changes to the immigration policy in 2005[[17]] included introducing HIV testing as part of the visa requirements and is the likely reason for the subsequent decline. The average annual rate of all women diagnosed with HIV in the past 10 years (0.80 per 100,000 female population) has remained steady and is similar to Australia (0.83).[[18]] However, most Western European countries, for example the United Kingdom (4.49), Denmark (2.04) and Germany (1.42),[[19]] reported higher rates most likely due to a high proportion of people originating from a country outside of where they were diagnosed. The New Zealand visa requirements were recently reviewed in October 2021 and HIV was removed from the list of medical conditions deemed likely to impose considerable costs to the health system.[[20]] HIV testing remains a requirement for visa applicants intending to stay for more than 12 months, with applications from people with HIV to be considered on a case-by-case basis. Continued surveillance is essential to show how these changes in immigration might impact on the overall number of people notified with HIV in New Zealand and whether there is any increase in women first diagnosed overseas but requiring care in New Zealand.

The HIV epidemic in New Zealand has been concentrated in GBM,[[2]] with women making up only 10% of locally acquired infection. About half of these infections have been from sexual contact with a partner traditionally considered to be at high risk such as a bisexual man, a person from a high prevalence country or a person who injects drugs. Such high risk is potentially reduced in the current era of prevention referred to as “Undetectable=Untransmissable” (U=U)[[21]] whereby the risk of transmitting HIV sexually from a person living with HIV who has an undetectable viral load is negligible.[[22]] To be undetectable, however, depends on a high level of people testing for HIV and adherence to HIV treatment in those who are diagnosed. Prevention of HIV in women therefore depends on overall national prevention and control strategies.

Of some initial concern was that 20% of women with locally acquired HIV were Māori, which is higher than the 16% of Māori women aged 15–64 years in the population. However, after removing the five Māori transgender women from this group, the proportion is reduced to 17%. This constitutes 31 women over a 25-year period—approximately one Māori woman per year. To reach the goal of elimination of transmission of HIV in Māori women, and to support Māori women living with HIV in New Zealand, the articles of Te Tiriti o Waitangi need to be upheld, including kāwanatanga (ensuring meaningful representation and participation at all levels), tino rangatiratanga (self-determination), and ōritetanga (ensuring equity between Māori and other citizens of New Zealand).[[23]]

Almost half of the women who acquired HIV in New Zealand were diagnosed late. Similar rates of late diagnosis amongst women have also been reported in Australia (24% in Australian born; 51% in overseas born women),[[6]] Western Europe (54%),[[5]] and the United Kingdom (51%).[[24]] An analysis of late diagnosis of people diagnosed with HIV in New Zealand from 2011–2020 showed minimal reduction in the proportion of late diagnosis in women from the previous period of 2005–2010. The main risk factors for late diagnosis in both heterosexual women and men were older age (40+) and being of an ethnic group other than European (unpublished data). New Zealand has no specific guidelines for HIV testing in women—apart from the universal offer of testing for all pregnant women, through which 32 women have been diagnosed since its introduction in 2006. Instead, women are included in the overall recommendations for testing that are in accordance with the 2006 US Centers for Disease Control.[[25]] These aim to promote more frequent testing and to “normalise” testing but still recommend testing for persons who are considered high risk and those seeking assessment for sexually transmitted infections (STIs).[[26,27]] For almost half of the women in our database, however, the risk status of their partner was unknown or not reported, which has been a reason for late diagnosis in other studies.[[28,29]] The number of women diagnosed late, and the small proportion who had a recent previous HIV test, indicates that more needs to be done to raise awareness of HIV testing among healthcare providers and among women themselves. Moreover, increasing age at the time of diagnosis, as seen in our data, has been reported in other countries. Reasons for this are varied, such as change in risk behaviour patterns, health-seeking behaviour, testing programmes and patterns, levels of stigma and low perceptions of risk by healthcare providers, particularly for older women.[[5,8,30]] Further research is required to understand testing rates and patterns in New Zealand that could guide further testing policies and other possible testing options and sites; for example, opportunistic testing in different types of healthcare settings such as gynaecology clinics, emergency departments, or primary care, and greater access to free HIV and other testing for sexually transmitted infections.

The number of women diagnosed with AIDS has been consistently low and declined even further in the past 10 years—a trend also seen in other high-income countries.[[19]] While this is encouraging, it would be possible to see no AIDS diagnoses in New Zealand if women are tested and diagnosed early.

Women currently living with diagnosed HIV in New Zealand are of diverse ethnicities and are mostly aged over 40. PHARMAC (the Pharmaceutical Management Agency responsible for government subsidised medications including ART) reported 453 women on subsidised ART in mid-June 2020. Our estimated number of 570 women currently living with HIV is likely to be an overestimate as those who have moved overseas since diagnosis cannot be completely ascertained, but could also reflect barriers to access to treatment for some women, especially non-European.[[23,29,31]] To uphold tino rangatiratanga for Māori women and provide culturally appropriate services to women of diverse ethnic backgrounds is essential for overcoming such barriers. Meeting the changing needs of women as they age is also important.[[10]] Further research is needed to assess how these needs are being met in New Zealand.

The risk of mother-to-child transmission of HIV is markedly reduced by antiretroviral treatment (ART) and having a suppressed viral load.[[32]] HIV antenatal screening is therefore vital for ensuring women know their status and have the opportunity to receive ART. A total of 192 women diagnosed with HIV have given birth in New Zealand since the beginning of routine surveillance in 1998, 34 of whom were diagnosed during their pregnancy, and none of these children have been infected with HIV. Implementation of universal, opt-out antenatal testing of HIV began in 2006 and since 2007 there have been no children with perinatally acquired HIV born in New Zealand, giving testament to the importance of ensuring this screening is maintained to a high standard and is accessible to all women.

In conclusion, it is to be acknowledged that the number of women diagnosed in New Zealand has remained low. More work, however, is required to prevent late diagnosis by ensuring timely and accessible testing, diagnosis and access to treatment that aligns and partners with Māori women and women of other key affected ethnic groups, as well as transgender women.

Summary

Abstract

Aim

We describe the characteristics of women diagnosed with HIV and AIDS in Aotearoa New Zealand over the last 25 years, and of women living with HIV in New Zealand in order to guide the response for HIV prevention and care.

Method

Data on women diagnosed with HIV and AIDS in New Zealand (1996–2020) were collected through routine surveillance case reports from healthcare providers. CD4 cell count <350 cells/mm³ was considered a late diagnosis. Women living with HIV by 31 December 2020 included those first diagnosed in New Zealand and those previously diagnosed overseas.

Results

A total of 634 women have been diagnosed with HIV (18% of all diagnoses in this time): most cases were acquired through heterosexual contact (82%). Twenty-eight percent (n=180/634) acquired HIV in New Zealand, of whom 43% were diagnosed late. AIDS was diagnosed in 128 women (72% within three months of HIV diagnosis). An estimated 570 women (77% aged >40 years) were living with diagnosed HIV at the end of 2020.

Conclusion

The number of women diagnosed with HIV each year in New Zealand has remained steady over recent years. More timely testing and diagnosis is essential to ensure women with HIV have access to appropriate treatment and support.

Author Information

Ashleigh de Gouw: Research Assistant, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Susan McAllister: AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Jane Bruning: National Coordinator, Positive Women Inc., Auckland. Judith Mukakayange: Burnett Foundation, Auckland. Jerram Bateman: Research Fellow, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Patricia Priest: Epidemiological Advisor, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin.

Acknowledgements

The AIDS Epidemiology Group at the University of Otago is funded by the Ministry of Health to undertake epidemiological surveillance of HIV infection and AIDS in New Zealand. The authors wish to acknowledge Milly Stewart from Toitū te Ao for her input and advice on this paper.

Correspondence

Sue McAllister: Department of Preventive and Social Medicine, University of Otago, PO Box 56, Dunedin 9054.

Correspondence Email

sue.mcallister@otago.ac.nz

Competing Interests

Nil.

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The United Nations has a goal to end AIDS by 2030 with targets of 95% of all people with HIV diagnosed, 95% on treatment and 95% having a suppressed viral load—and for these targets to be achieved within all sub-populations and groups.[[1]] This is particularly challenging in countries with a concentrated epidemic, such as among gay and bisexual men (GBM), who are often the priority group for reaching the goal. Other groups affected by HIV, who sometimes constitute small numbers of people, also require attention.

Aotearoa New Zealand is a low HIV prevalence country, with the epidemic largely concentrated in GBM.[[2]] Women in low-prevalence countries are often perceived as being at low risk for HIV infection by both themselves and medical professionals,[[3]] which results in less testing, late diagnosis[[4,5]] and barriers to treatment and support services.[[3,6]] Each of these are contributing factors towards the increased risk of HIV progressing to an AIDS diagnosis and poorer long-term outcomes.[[5,7]] Stigma and discrimination can also lead to hesitancy to test.[[6,8]] Once diagnosed, women can feel socially isolated particularly if HIV support services are mostly designed for gay men.[[6]]

Women living with HIV also have particular needs in the areas of sexual and reproductive health, clinical management and emotional wellbeing.[[3,9,10]] New Zealand has a network of Infectious Disease Specialists, based mostly in the large urban centres, where people diagnosed with HIV are referred to for treatment. Some of these centres also have a team of HIV nurse specialists, social workers and access to other allied health professionals for the care and support of patients. Positive Women Incorporated was established in 1990 to support and empower women and their families living with or affected by HIV and to provide services unique to women. More recently, Toitū te Ao was established as a Kaupapa Māori organisation to support and uphold the mana of Māori women living with HIV.

New Zealand aims to eliminate local transmission of HIV.[[11]] The total number of people diagnosed with HIV each year has been declining since 2016,[[12]] but to reach the goal it is important to tailor HIV testing, treatment and support services to those who need them most. To date there is a lack of published data on women diagnosed and living with HIV to guide the response. We therefore describe the characteristics of women diagnosed with HIV and AIDS over the last 25 years and women thought to be living with HIV in New Zealand at the end of 2020.

Methods

Data sources

Since 1996, the AIDS Epidemiology Group (AEG) at the University of Otago has undertaken enhanced surveillance of HIV, whereby anonymous information on individuals newly diagnosed with HIV in New Zealand has been sought from the clinician who requested the HIV confirmatory test. From 2002, data have also been received from laboratories performing HIV viral load (VL) testing in order to capture information on people living with HIV in New Zealand who had their initial HIV diagnosis overseas. From 2017, HIV became notifiable under the Health (Protection) Amendment Act 2016.

In New Zealand, an individual with HIV infection is defined as having AIDS when they first develop one of a number of specific AIDS-defining conditions.[[13]] Clinicians diagnosing AIDS are required to notify the case using unnamed coded information, and to complete a case report.

Information on women known to be infected with HIV who give birth has been collected by the AEG via the New Zealand Paediatric Surveillance Unit since 1998.

Definitions

Women diagnosed with HIV include all women (including transgender) diagnosed in New Zealand since the beginning of 1996 to the end of 2020. This excludes women who were previously diagnosed overseas.

The estimated number of women living with diagnosed HIV in New Zealand at the end of 2020 includes women first diagnosed in New Zealand between the years 1996 and 2020, as well as those previously diagnosed overseas and notified to the AEG through VL testing, for whom no information has been received to say they had died or gone overseas.

Variables and analysis

From the AEG database, demographic data for women include age and place of residence at the time of diagnosis, current age (calculated as at the end of December 2020), and prioritised ethnicity.[[14]] Mode of acquisition was categorised into heterosexual contact, injecting drug use (IDU) (including women for whom both IDU and heterosexual contact were reported as possible modes of acquisition), mother-to-child transmission and other or not reported. Place of likely acquisition was categorised as New Zealand, overseas or unknown. Clinical data included the site of, and reason for testing, sexual partner’s risk status, previous negative HIV test, and CD4 cell count (available since 2005) categorised to <350 cells/mm³ and 350+ with a CD4 cell count of less than 350 considered a late diagnosis.[[15]] The characteristics of women diagnosed in New Zealand are presented in two time periods (1996–2010 and 2011–2020) to identify and describe any change over these years. Descriptive analysis was undertaken using Stata SE Version 17. Denominator data for the rate of women diagnosed with HIV was the estimated resident all-female population as in December each year, and for women living with diagnosed HIV the denominator was the estimated resident female population aged 15 and over as in December 2020.[[16]]

Results

Women diagnosed in New Zealand

A total of 634 women (18 of whom were transgender) were newly diagnosed with HIV in New Zealand over the 25 years from 1996 to the end of December 2020—18% of all diagnoses in this time. The main mode of acquisition was heterosexual contact (82%). Most women (76%) were aged less than 40 years at the time of diagnosis, however, in the past 10 years the proportion of women aged >40 years at the time of diagnosis has increased (37% compared to 19% between 1996 and 2010) (Table 1).

Almost half of the women (42%) were residing in the Northern region (wider Auckland and Northland District Health Board areas) at the time of diagnosis. The main site of HIV testing was at a general practice (40%) and the main reasons for testing were because of symptoms (19%), or a history of risk (14%). Overall, 13% tested as part of immigration screening and 14% refugee screening. The latter declined from 17% in 1996–2010 to 7% in 2011–2020. Forty three (7%) women were diagnosed through antenatal testing—32 after the introduction of routine antenatal screening in 2006.

The majority (73%) of women diagnosed in the earlier years had acquired HIV overseas (Figure 1) and were mostly of African (52%) or Asian (19%) ethnicity (Table 1). The 3-year average shows a sharp rise to 2005–2007 followed by a rapid decline. In the last 10 years (2011–2020), there has been a similar number of women acquiring HIV overseas and in New Zealand (Figure 1) with wider representation from different ethnic groups (Table 1). The average annual rate of all women diagnosed in the 15 years from 1996 to 2010 was 1.43 per 100,000 females and in the past 10 years almost halved to 0.80 per 100,000.

View Figures & Tables.

Women with HIV acquired in New Zealand

Table 2 shows the age, ethnicity, sexual partner’s risk status, previous negative test, and CD4 count information of the 180 women (including 14 transgender) who were reported to have acquired HIV in New Zealand between 1996 and 2020 (10% of all locally acquired HIV diagnoses in this time). The ethnicity of these women differs from that of the overall group diagnosed in New Zealand, with a greater proportion being Māori (20%) or of European (41%) ethnicity. The age is similar to the overall group diagnosed in New Zealand, and there was a greater proportion of older women diagnosed in 2011–2020 (33/82; 40%) than in 1996–2010 (19/98; 19%). Since 2005 (when CD4+ count information was first collected), 43% had a CD4 count less than 350 cells/mm³ at the time of diagnosis and were therefore considered a late diagnosis. Only a third had ever had a previous HIV test. Of the 14 transgender people, 5 were Māori, 4 European and 5 Pasifika or other ethnicity. Two had a CD4 count less than 350 cells/mm³ at the time of diagnosis, and 4 had had a previous negative HIV test.

Women diagnosed with AIDS

A total of 128 women were diagnosed with AIDS (Table 3), an average of 6.2 women per year in the years 1996 to 2010, and 3.5 women per year between 2011 and 2020 (Figure 2). Māori women made up 11% of women diagnosed with AIDS, 27% Asian, 35% Middle Eastern, Latin American or African, 21% European, and 6% Pasifika. The most common clinical indicator of AIDS was an opportunistic infection (67%) such as pneumocystis pneumonia, oesophageal candidiasis and cerebral toxoplasmosis. Tuberculosis was frequently reported in the earlier years between 1996 and 2010 (n=27/93; 29%) but has reduced considerably since then (n=3/35; 9%). The mean age at the time of an AIDS diagnosis was 40 years (standard deviation 12.85 years). Seventy-two percent (n=92) had an AIDS diagnosis within three months of their HIV diagnosis and were therefore considered a late diagnosis of HIV (Table 3). A total of 33 women have died from AIDS over the 25 years (Figure 2).

Women living with diagnosed HIV

Of the women who had been notified with HIV between 1996 and 2020 (either diagnosed in New Zealand or previously diagnosed overseas), 184 had died (n=42) or gone overseas (n=142), leaving an estimated 570 living with diagnosed HIV in New Zealand at the end of 2020 (27.3 per 100,000 females aged 15 and over). Three quarters (77%) are aged 40 or more, and over a third (38%) are aged over 50 years. African (39%), European (22%) and Asian (20%) women make up the greatest proportion, followed by Māori (6%) and Pasifika (6%). The main mode of acquisition was heterosexual contact (78%), mother-to-child transmission (3%), injecting drug use (2%) and for the remainder the mode was unknown or not reported. Nineteen are transgender women.

Births to women with diagnosed HIV

Between 1998 and 2020, 192 children were born in New Zealand to women with diagnosed HIV. None of these children have been infected with HIV. The majority of women (82%) were diagnosed before their pregnancy, and 34 (18%) diagnosed during their pregnancy. Almost all of the women received antiretroviral treatment (97%). Delivery was by caesarean section for 53% and vaginal delivery for 46%. The majority of women did not breastfeed their children (95%).

Discussion

From routine surveillance data we have shown that the number of women diagnosed with HIV in New Zealand has remained low over the past 25 years, particularly women who acquired HIV in this country. Of concern, however, is the high proportion of women who were diagnosed late. Women living with diagnosed HIV in New Zealand are predominantly older and ethnically diverse.

A strength of our study is the use of national surveillance data collected consistently over a long period of time. Overall, there has been a high return of case report forms from clinicians in this time (89%), however, data are incomplete for some specific questions such as assessment of risk history. Information was obtained from clinicians at the time of diagnosis therefore some data such as the place of residence and whether women are still living in New Zealand may have subsequently changed.

The number of women diagnosed in New Zealand in the earlier years was mostly women who acquired HIV overseas—largely from high HIV prevalence countries in sub-Saharan Africa. Changes to the immigration policy in 2005[[17]] included introducing HIV testing as part of the visa requirements and is the likely reason for the subsequent decline. The average annual rate of all women diagnosed with HIV in the past 10 years (0.80 per 100,000 female population) has remained steady and is similar to Australia (0.83).[[18]] However, most Western European countries, for example the United Kingdom (4.49), Denmark (2.04) and Germany (1.42),[[19]] reported higher rates most likely due to a high proportion of people originating from a country outside of where they were diagnosed. The New Zealand visa requirements were recently reviewed in October 2021 and HIV was removed from the list of medical conditions deemed likely to impose considerable costs to the health system.[[20]] HIV testing remains a requirement for visa applicants intending to stay for more than 12 months, with applications from people with HIV to be considered on a case-by-case basis. Continued surveillance is essential to show how these changes in immigration might impact on the overall number of people notified with HIV in New Zealand and whether there is any increase in women first diagnosed overseas but requiring care in New Zealand.

The HIV epidemic in New Zealand has been concentrated in GBM,[[2]] with women making up only 10% of locally acquired infection. About half of these infections have been from sexual contact with a partner traditionally considered to be at high risk such as a bisexual man, a person from a high prevalence country or a person who injects drugs. Such high risk is potentially reduced in the current era of prevention referred to as “Undetectable=Untransmissable” (U=U)[[21]] whereby the risk of transmitting HIV sexually from a person living with HIV who has an undetectable viral load is negligible.[[22]] To be undetectable, however, depends on a high level of people testing for HIV and adherence to HIV treatment in those who are diagnosed. Prevention of HIV in women therefore depends on overall national prevention and control strategies.

Of some initial concern was that 20% of women with locally acquired HIV were Māori, which is higher than the 16% of Māori women aged 15–64 years in the population. However, after removing the five Māori transgender women from this group, the proportion is reduced to 17%. This constitutes 31 women over a 25-year period—approximately one Māori woman per year. To reach the goal of elimination of transmission of HIV in Māori women, and to support Māori women living with HIV in New Zealand, the articles of Te Tiriti o Waitangi need to be upheld, including kāwanatanga (ensuring meaningful representation and participation at all levels), tino rangatiratanga (self-determination), and ōritetanga (ensuring equity between Māori and other citizens of New Zealand).[[23]]

Almost half of the women who acquired HIV in New Zealand were diagnosed late. Similar rates of late diagnosis amongst women have also been reported in Australia (24% in Australian born; 51% in overseas born women),[[6]] Western Europe (54%),[[5]] and the United Kingdom (51%).[[24]] An analysis of late diagnosis of people diagnosed with HIV in New Zealand from 2011–2020 showed minimal reduction in the proportion of late diagnosis in women from the previous period of 2005–2010. The main risk factors for late diagnosis in both heterosexual women and men were older age (40+) and being of an ethnic group other than European (unpublished data). New Zealand has no specific guidelines for HIV testing in women—apart from the universal offer of testing for all pregnant women, through which 32 women have been diagnosed since its introduction in 2006. Instead, women are included in the overall recommendations for testing that are in accordance with the 2006 US Centers for Disease Control.[[25]] These aim to promote more frequent testing and to “normalise” testing but still recommend testing for persons who are considered high risk and those seeking assessment for sexually transmitted infections (STIs).[[26,27]] For almost half of the women in our database, however, the risk status of their partner was unknown or not reported, which has been a reason for late diagnosis in other studies.[[28,29]] The number of women diagnosed late, and the small proportion who had a recent previous HIV test, indicates that more needs to be done to raise awareness of HIV testing among healthcare providers and among women themselves. Moreover, increasing age at the time of diagnosis, as seen in our data, has been reported in other countries. Reasons for this are varied, such as change in risk behaviour patterns, health-seeking behaviour, testing programmes and patterns, levels of stigma and low perceptions of risk by healthcare providers, particularly for older women.[[5,8,30]] Further research is required to understand testing rates and patterns in New Zealand that could guide further testing policies and other possible testing options and sites; for example, opportunistic testing in different types of healthcare settings such as gynaecology clinics, emergency departments, or primary care, and greater access to free HIV and other testing for sexually transmitted infections.

The number of women diagnosed with AIDS has been consistently low and declined even further in the past 10 years—a trend also seen in other high-income countries.[[19]] While this is encouraging, it would be possible to see no AIDS diagnoses in New Zealand if women are tested and diagnosed early.

Women currently living with diagnosed HIV in New Zealand are of diverse ethnicities and are mostly aged over 40. PHARMAC (the Pharmaceutical Management Agency responsible for government subsidised medications including ART) reported 453 women on subsidised ART in mid-June 2020. Our estimated number of 570 women currently living with HIV is likely to be an overestimate as those who have moved overseas since diagnosis cannot be completely ascertained, but could also reflect barriers to access to treatment for some women, especially non-European.[[23,29,31]] To uphold tino rangatiratanga for Māori women and provide culturally appropriate services to women of diverse ethnic backgrounds is essential for overcoming such barriers. Meeting the changing needs of women as they age is also important.[[10]] Further research is needed to assess how these needs are being met in New Zealand.

The risk of mother-to-child transmission of HIV is markedly reduced by antiretroviral treatment (ART) and having a suppressed viral load.[[32]] HIV antenatal screening is therefore vital for ensuring women know their status and have the opportunity to receive ART. A total of 192 women diagnosed with HIV have given birth in New Zealand since the beginning of routine surveillance in 1998, 34 of whom were diagnosed during their pregnancy, and none of these children have been infected with HIV. Implementation of universal, opt-out antenatal testing of HIV began in 2006 and since 2007 there have been no children with perinatally acquired HIV born in New Zealand, giving testament to the importance of ensuring this screening is maintained to a high standard and is accessible to all women.

In conclusion, it is to be acknowledged that the number of women diagnosed in New Zealand has remained low. More work, however, is required to prevent late diagnosis by ensuring timely and accessible testing, diagnosis and access to treatment that aligns and partners with Māori women and women of other key affected ethnic groups, as well as transgender women.

Summary

Abstract

Aim

We describe the characteristics of women diagnosed with HIV and AIDS in Aotearoa New Zealand over the last 25 years, and of women living with HIV in New Zealand in order to guide the response for HIV prevention and care.

Method

Data on women diagnosed with HIV and AIDS in New Zealand (1996–2020) were collected through routine surveillance case reports from healthcare providers. CD4 cell count <350 cells/mm³ was considered a late diagnosis. Women living with HIV by 31 December 2020 included those first diagnosed in New Zealand and those previously diagnosed overseas.

Results

A total of 634 women have been diagnosed with HIV (18% of all diagnoses in this time): most cases were acquired through heterosexual contact (82%). Twenty-eight percent (n=180/634) acquired HIV in New Zealand, of whom 43% were diagnosed late. AIDS was diagnosed in 128 women (72% within three months of HIV diagnosis). An estimated 570 women (77% aged >40 years) were living with diagnosed HIV at the end of 2020.

Conclusion

The number of women diagnosed with HIV each year in New Zealand has remained steady over recent years. More timely testing and diagnosis is essential to ensure women with HIV have access to appropriate treatment and support.

Author Information

Ashleigh de Gouw: Research Assistant, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Susan McAllister: AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Jane Bruning: National Coordinator, Positive Women Inc., Auckland. Judith Mukakayange: Burnett Foundation, Auckland. Jerram Bateman: Research Fellow, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin. Patricia Priest: Epidemiological Advisor, AIDS Epidemiology Group, Department of Preventive and Social Medicine, University of Otago, Dunedin.

Acknowledgements

The AIDS Epidemiology Group at the University of Otago is funded by the Ministry of Health to undertake epidemiological surveillance of HIV infection and AIDS in New Zealand. The authors wish to acknowledge Milly Stewart from Toitū te Ao for her input and advice on this paper.

Correspondence

Sue McAllister: Department of Preventive and Social Medicine, University of Otago, PO Box 56, Dunedin 9054.

Correspondence Email

sue.mcallister@otago.ac.nz

Competing Interests

Nil.

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