HIV in the UK: Changes and Challenges; Actions and Answers The People Living With HIV Stigma Survey UK 2015 London STIGMA SURVEY UK 2015
LONDON The landscape for people living with HIV in the United Kingdom (UK) is dramatically different from what it was ten or twenty years ago. Advances in treatment mean the life expectancy of HIV positive people can be the same as that of the general population. Living with HIV in the age of undetectability and reduced risk of transmission should mean a better quality of life for people living with HIV. 1 However, despite some shifts in public attitudes, a considerable number of people in the UK still hold stigmatising attitudes towards people living with HIV. 2 Consequently, stigma remains a significant obstacle for many people living well with diagnosed HIV. The People Living with HIV Stigma Survey aimed to provide an evidence base of the HIV-related stigma and discrimination experienced by people living with HIV in the UK. Building on the experience of the 2009 People living with HIV Stigma Index, the 2015 survey was a collaborative cross sector community-led initiative that captured participants feelings and experiences with partners, family and friends, at work, in faith and in healthcare settings related to their HIV within the previous 12 months. 3 With a quarter of participants (361/1576) living in London, these survey findings provide a basis for understanding the lived experiences of HIV-positive people in the city today. This report is one of eleven report cards covering key findings of the UK Stigma Survey 2015. The reports were developed by community for community. We thank Public Health England for assistance in the data collection and analyses of the survey. All of the report cards and survey methodology can be downloaded from the UKStigmaSurvey website. HIV-related stigma is commonly understood as a process of devaluation and may constitute: Self or internalised stigma: the acceptance of negative self-beliefs associated with being HIV positive Anticipated or perceived stigma: the awareness of negative beliefs and expectation of negative treatment amongst people living with HIV Discrimination: the negative and devaluing treatment of people due to their status. These may fall within the purview of the law. 4 These different types of HIV-related stigma were measured in a number of ways in the survey. Participants were asked about negative and positive feelings in relation to their status to assess levels of self or internalised stigma. They were also asked if they had worried about or avoided situations in relation to their HIV to assess levels of anticipated or perceived stigma and, finally, whether they had experienced different treatment in relation to their HIV to capture discriminatory treatment. With the understanding that a person s experience of stigma may be different in their personal, social and working life, participants were asked to describe their experiences of stigma with partners, family and friends, and in their workplaces, faith communities and healthcare settings over the past 12 months. 1 Undetectability means a person s viral load, or the amount of virus in the blood of an HIV+ person, is lower than the amount a blood test can detect. Research has shown that when a person is undetectable they are not able to transmit the virus to another person (see: http://www.aidsmap.com/no-one-with-an-undetectableviral-load-gay-or-heterosexual-transmits-hiv-in-first-two-years-of-partner-study/page/2832748). 2 NAT (2016) Most Affected by HIV. Available at : http://www.nat.org.uk/hiv-in-the-uk/most-affected-by-hiv.aspx 3 In order to further explore how people living with HIV experience stigma, 40 semi-structured interviews were conducted with a representative sample by a community researcher. Many of the quotations used in the report cards come from these interviews 4 Strive. Measuring HIV Stigma and Discrimination, 2012. Available at: http://strive.lshtm.ac.uk/system/files/attachments/strive_stigma%20brief-a4.pdf (Accessed February 4th 2016) 2/12
Summary of findings in this report Most participants in London reported someone in their social circle or at work was aware of their status, and over half felt supported. Three times as many black, Asian or minority ethnic participants had not disclosed to anyone as UK-born white participants. Internalised stigma was common, with around half of participants reporting negative feelings related to their HIV in the last year, comparable to participants overall. Many participants also reported anticipated stigma in sexual relationships, along with worrying about being gossiped about, treatment in the workplace, and verbal harassment. More than half felt supported in primary care, with fewer avoiding dental care than overall participants, despite two in five fearing different treatment in primary care. Over half of participants in London had sought support in the last 12 months, comparable to participants overall. 1. Who took part? 1576 participants were recruited from community organisations and HIV clinics throughout the UK. 361 (23%) were living in London. 80% (n=287) of London participants were men and 4 individuals (1%) identified as trans. Nine out of ten (89%, n=256) male participants identified as men who have sex with men (MSM) and 61% (n=174) as white British or Irish. 8 (n=56) of female participants identified as heterosexual, and 8 (n=57) as black, Asian or minority ethnic (BAME). Half (5) were between 35 and 50 years old. 5% (n=20) had injected recreational or performance enhancing drugs and 3% (n=10) had been paid for sex in the last 12 months. Comparable to participants in the rest of the UK, 26% of people in London had struggled constantly or fallen behind on financial commitments in the last 12 months (31% among BAME participants and 3 of women). A third (29%) had sometimes or often gone short of food in the last year (41% of BAME participants and 49% of women). 6% 9% 17% White British/Irish Black/African/Caribbean Other white (not British/Irish) 17% 27% 24 and under 25-34 ETHNICITY 51% Mixed white, black, Asian Asian AGE GROUP 35-50 Over 50 20% Any other 5 Figure 1. Demographics of participants 3/12
HIV testing, diagnosis and treatment The majority of participants in London had been diagnosed with HIV in the UK (83%), 9% (n=27) of these in the last year (comparable to UK-wide surveillance data). The large majority of those diagnosed in the past 5 years in the UK reported being tested for HIV voluntarily (91%), while 5 participants felt they were made to take a test (2 men and 3 women). 9 of participants in London were currently on antiretroviral treatment; this was similar by gender and ethnicity, and to the overall population accessing HIV care in the UK. In the last year 2010-2014 2005-2009 1995-2004 9% 20% 21% 3 6% Decision to test for HIV among those diagnosed in the UK in the last 5 years 91% I took the decision myself to be tested (i.e. it was voluntary) I was made or pressured to take a test I was tested without my knowledge Before 1995 15% Figure 2. Time since diagnosis in the UK Figure 3. Decision to test for HIV among participants diagnosed in the UK in the last 5 years Changes and challenges 2. Telling others Almost all participants in London (9) reported that at least one member of their family or friend group, a partner, or someone in their workplace or faith setting was aware of their HIV status. Generally, participants felt well supported (Figures 4-8) and half (50%) felt empowered upon telling someone. More than three times as many BAME participants living in London had not told anyone about their HIV compared to non-bame participants (17% vs. 5%). Partners 80% of participants in London were sexually active in the last 12 months, 27% with only their main partner. Most had told their partner about their HIV. Two thirds of those with one partner felt well supported upon sharing their status with their partner, with fewer reporting good support from multiple partners. I was afraid that if I told my family, they would think it s a death wish, they would worry. They d bury me before I was even dead Man, Asian ethnicity, diagnosed 2005-2006 Sexually active with only main sexual partner 27% 90% 66% Percentage of people Main and others Multiple 2 46% 31% 38% 77% 87% Percentage of partners aware Percentage reporting good support Figure 4. Awareness of HIV status and support in sexual relationships 4/12
Family and friends Most participants reported at least one member of their family or friend group was aware of their status (63% and 81% respectively); over half of participants felt supported in these settings. All Almost all Some None No response 57% 55% 19% 1 29% 35% 19% 20% 4 15% Awareness among family Good support Figure 5. Awareness of HIV status and support among participants family members Awareness among friends Good support Figure 6. Awareness of HIV status and support among participants friends Faith One in four (26%) of the 151 participants in London who had ever been active in a religious community reported that someone in their faith group was aware of their status. Two in five (41%) of the 192 participants active in a faith group in the last year reported someone in the community was aware (compared to 29% in the UK overall). Most (71%) active in the last year felt well supported in their faith communities (compared to 61% in the UK overall). Ever active in faith community Active in the last 12 months 19% 26% 4 41% 69% 71% Aware Figure 7. Awareness of status and support in faith settings % of people Good support Workplace Half (53%) of the 248 participants currently working reported that someone in their workplace was aware of their HIV status; the majority felt well supported (69%). Yet, in the last year, 48 participants (13%) in London had decided not to apply for, or turned down, employment or a promotion due to their status. All Almost all Some None 47% 38% 10% 69% Awareness among employers and / or co-workers Good support Figure 8. Awareness of status and support in the workplace 5/12
Pressure to disclose to others Despite high levels of awareness and support, not all participants felt completely in control of disclosure, with a some feeling pressured to disclose their status to others in the last 12 months (Figure 9). Only main Main and others Multiple Sexual partners 8% Family 7% Friends 6% Workplace 3% Figure 9. Pressure to tell others in the last 12 months 3. Experiences of stigma and discrimination Felt and experienced stigma are affected by many factors, including gender, sexuality, It s amazing that despite the advances in ethnicity and socioeconomic position, along treatment, people s attitudes are still exactly with HIV status. The survey attempted to the same Woman, 48 years old, black ethnicity, examine these layers of stigma and measure diagnosed 1996 to what extent instances of worry, avoidance and discrimination could be attributed to participants HIV status. A significant proportion had worried about being stigmatised, and had avoided encounters or had experienced discriminatory treatment in the last 12 months (Figure 10). Many felt this was mainly due to their HIV status (rather than other factors). Proportions of participants in London who felt or experienced stigma were comparable to the overall sample. Although most participants felt well supported by their partners, relationships provided one of the most common sources of worry in the last year. A third of all participants feared being rejected by a sexual partner (37%) and had avoided sexual encounters (30%) in the last 12 mainly months due to their status, while a quarter (2) had experienced sexual rejection. In the last 12 months... % of all who report experience is due to HIV % of all who answered yes Have you worried about: Have you: Have you experienced: Figure 10. Worry, avoidance and discrimination in the last 12 months 6/12 Sexual rejection 37% 5 Gossip 2 4 Job security 1 26% Workplace treatment Verbal harassment Excluded - social gatherings Excluded - family gatherings Physical assault Avoided sex Avoided social gatherings Avoided family gatherings Avoided employment / promotion Left a job / income source Gossip Sexual rejection Verbal harassment Job change - consensual Excluded - family gatherings Excluded - social gatherings Lost job Refused employment / promotion Physical assault Job change - against wishes 10% 30% 48% 1 15% 2 8% 20% 3% 3% 1% 1% 17% 25% 1 2 10% 23% 10% 23% 10% 9% 2 2 7% 13% 9% 8% 8% 7% 7% 3 33%
3. Mental health and well being The majority of participants in London reported feeling positive about life (61%) and in control of their health (63%) with half (5) feeling as good as anyone else. I don t feel bad at all about my HIV Woman, 48 years old, black ethnicity, diagnosed 1996 Yet, around half reported feeling shame, guilt, low self-esteem and/or self-blame in relation to their HIV status in the last 12 months. Negative feelings varied with time since diagnosis: twice as many participants diagnosed in the past year had a poor self-image as those diagnosed more than 5 years ago (61% vs. 31%). Overall, 20% of participants reported suicidal ideation in the past 12 months (this was higher among those diagnosed in the past 12 months (3), and comparable to the 18% of people in the UK overall who reported suicidal ideation in the last year). 4. Healthcare The majority (89%) of participants in London stated that their GP was aware of their status, and three in five (59%) felt well supported. Fewer reported that their dentists were aware (55%), yet two thirds (68%) felt well supported. This was comparable to participants in the UK overall. At one point, I didn t want my GP to know because I thought the whole surgery would know Man, 61 years old, white ethnicity GP / Dentist aware No response GP / Dentist not aware 3% 8% Good support Good support Awareness & support in GP practice 91% 89% 59% 21% 8% 7% Moderate Low None No response 4 Awareness & support in dental practice 3% 55% 68% 18% 8% Moderate Low None No response Figure 11. Awareness and support in GP practice Figure 12. Awareness and support in dental practice Nevertheless, a large number of participants feared being treated differently to other patients in primary, outpatient and inpatient care. 13% had avoided GP care when required, and 8% had avoided dental care (compared to 1 in the UK overall). I haven t been to the dentist since becoming HIV positive because I ve somehow got the feeling that they wouldn t react too well to knowing my HIV status White MSM, 61, London, diagnosed 2012 7/12
Worried about being treated differently Avoided seeking care Felt refused or delayed treatment 3 37% 13% 5% 8% 7% 1% 19% 3% 3% 15% GP Dental practice STI clinic Outpatient Inpatient Figure 13. Worry, avoidance and feeling refused in healthcare settings A minority (8%) reported feeling pressured to tell others about their HIV by a healthcare worker in the past 12 months. No participants in London reported a healthcare worker had disclosed their status without consent in the last 12 months. 5. HIV and the law Challenging discrimination Nine people ( of participants in London) reported losing their job or another source of income due to their HIV status in the last 12 months, while 31 (9%) reported being denied insurance products (e.g. health, dental, life, or job protection) in the last year. Most (6) were aware of the Equality Act 2010, which provides protection against discrimination for people living with HIV in England, Wales and Scotland. However, the majority (28/31, 90%) who reported instances of discrimination did not seek legal redress under the Act s provisions. Reasons for not seeking redress included: lack of confidence that the outcome would be successful or feeling intimidated or scared to take action. One in five (21%) felt able to influence legal or rights matters affecting people living with HIV. Despite this, one third (3) of all participants had tried to personally address an issue of HIV-related stigma or discrimination and a quarter (25%) had been involved in a programme or project providing assistance to people living with HIV. Investigation or prosecution relating to HIV transmission No participants in London reported being investigated by the police in relation to their HIV status. Eight out of ten participants in London (83%) were aware that people have been prosecuted for recklessly transmitting HIV to a sexual partner. Nine in ten (88%) thought that both partners, regardless of HIV status, equally share responsibility for preventing transmission. One in seven participants (1) believed that transmission of HIV should be a criminal offence (compared to 23% across the UK); 30% were not sure. A third (35%) reported that the risk of criminal prosecution relating to HIV transmission had influenced decisions regarding disclosure of their status. 8/12
6. Support and advocacy Participants were asked whether they had sought support in relation to their HIV in the last 12 months. Overall over half (59%) reported seeking support and a third (3) had received support from a local HIV support organisation; this proportion was higher among participants who had felt suicidal (4). Local HIV support organisation Online Peer group NHS patient support group Local policy organisation Faith group Community group None Overall 3 15% 1 11% 6% 41% Diagnosed in last year 39% 25% 25% 25% - 3 Table 1: Sources of support in the last 12 months (participants could choose more than one) Despite 41% reporting they had not sought support of any kind, more than half of all participants in London (55%) reported offering emotional support to other people living with HIV in the last 12 months. Actions that participants in London would most like to advocate for are HIV education in schools, raising public awareness and knowledge, and providing emotional, educational and referral support to people living with HIV. Education in schools 66% Raising public awareness and knowledge 5 Providing support (emotional, physical and referral) Advocating for the rights of all people living with HIV Advocating for evidence-based media coverage of HIV Educating people living with HIV about living with HIV Advocating for and/or providing support to marginalised groups 40% 40% 29% 21% 1 Figure 14. Addressing stigma and discrimination for people living with HIV (participants could choose more than one) 9/12
Actions and Answers 8. Conclusions The survey findings show that stigma and discrimination continue to impact the lives of HIV positive people in the London today. Participants in London had broadly similar experiences in the past 12 months to those in the UK overall. Almost all people reported someone in their social or work environment was aware of their status, with over half feeling well supported. More participants in London had disclosed in a faith setting and reported good support than the UK overall. Three times as many BAME participants had not disclosed to anyone compared to non-bame people. This is an area that warrants further investigation. HIV-related stigma was most commonly reported in sexual relationships. Education targeted at the general public and people living with HIV on undetectability could impact highly on the stigma felt and experienced by people living with HIV in this setting. Over half reported negative feelings, or internalised stigma, related to their HIV in the last year, with fewer participants feeling positive about life and as good as anyone else than in the UK overall. This is an area that warrants further investigation. Overall, there is a need to improve support for people living with HIV including the provision of psychological and peer support especially in the year after diagnosis. Despite many being aware of the Equality Act 2010, few had sought redress for acts of discrimination under its provisions as they feared the outcome would not be successful or felt scared to take action. People living with HIV in London believe efforts to challenge HIV-related stigma and discrimination should focus on education in schools, raising public awareness, and providing emotional, physical and referral support to HIV positive people. Additionally, efforts to promote third sector offers, emphasising interventions geared towards the most at-risk groups and factoring in e-literacy and access to care and services, could additionally improve the quality of life of people living with HIV in London and the UK as a whole. 10/12
Appendix: Methodology and demographics Participants were recruited from over 120 cross-sector community organisations and 46 NHS HIV clinics throughout the UK. The survey was predominantly quantitative, with space for open comment after most questions where additional detail would help with clarification. There were comparatively more people from black, Asian and other minority ethnic (BAME) communities among participants in London (48% vs. 37% in the UK as a whole). Seven out of ten participants in London were working at the time of the survey. Figure 1. Regional distribution of all participants (n=1576) Participants were categorised into three socio-economic status (SES) groups according to education level, employment, size of residence and whether they had gone short of food or fallen behind on bills in the last 12 months. Over a third (37%) of participants in London were in the lowest SES group (43% of BAME participants vs. 30% of UK-born white participants), 21% were in the middle group, and 43% were in the highest SES group. Over half of women (5) compared to 3 of men had a low SES. Those who had been diagnosed less recently were more likely to be in the lowest SES group. The socio-economic distribution of participants in London was broadly similar to that of participants in the UK. 26% SECTOR OF EMPLOYMENT AT TIME OF SURVEY 13% 17% 19% 3 3 Private sector Public sector Voluntary sector Not currently working 43% SOCIOECONOMIC STATUS 21% 37% Lower SES Mid-level SES Higher SES Figure 2. Sector of employment at time of survey (n=361) Figure 3. Socioeconomic status (n=361) Two in five participants (4, n=151) had been active members of a religious community, (50% of BAME people and 59% of women). One in five (19%) were active in the last 12 months. Of the 151 participants who had ever been active, 86% identified as Christians (Figure 4). 1 of ever-active members had become more active in their faith since their diagnosis, 15% had become less active and had left their faith group completely. Employment Status Employed full time Employed part time Casual work Unemployed Volunteering Sick/disabled Looking after home Retired Percentage 50% 1 5% 19% 13% 18% 3% 6% Student Table 1. Employment status in last year (n=361) 11/12
About half (47%) of participants in London were in a relationship at the time of the survey (Figure 5). A fifth (18%) did not have a sexual partner in the last 12 months. 3% 3% 1% Christian Living with partner 31% RELIGIOUS AFFILIATION AMONG THOSE EVER ACTIVE IN A FAITH SETTING 86% Muslim Buddist Other Jewish Hindu With partner (not living together) 17% More than one partner 3% Single/no relationship 49% Figure 5. Relationship status at time of survey (n=361) Figure 4. Religious affiliation among those ever active in a faith setting (n=361) Supported by a grant from ViiV Healthcare 12/12