HIV in the UK: Changes and Challenges; Actions and Answers The People Living With HIV Stigma Survey UK 2015 England STIGMA SURVEY UK 2015
ENGLAND 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 1576 participants were recruited from community organisations and HIV clinics throughout the UK. 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 UK Stigma Survey website. This report card focuses on the experiences of the 865 participants living in England. 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. A person with undetectable virus is extremely unlikely to transmit the virus to another person. See: http://www.aidsmap.com/noone-with-an-undetectable-viral-load-gay-or-heterosexual-transmits-hiv-in-first-two-years-of-partner-study/page/2832748 2 National AIDS Trust. HIV Public Knowledge and Attitudes, 2014 http://www.nat.org.uk/media/files/pdf%20documents/mori_2014_report_final.pdf 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%20 brief-a4.pdf (Accessed February 4th 2016). 2/14
Summary of findings in this report Disclosure to partners, family and friends was high, with over half of participants feeling well supported Felt and experienced stigma was most common in sexual relationships, and many worried about and experienced being gossiped about, along with fearing negative treatment in the workplace Half of participants in England reported negative feelings related to their status in the last year; more in the North West reported a poor self image A significant number of people feared discriminatory treatment in primary care, with some avoiding the GP and dentist when care was required A third of participants in England sought help from a local HIV organisation in the last 12 months while more than half had sought support of some kind related to their HIV 1. Who took part? 1576 participants were recruited from community organisations and HIV clinics throughout the UK. 865 (55%) were living in England. 290 (34%) lived in the Northeast, Northwest or Yorkshire and the Humber, 186 (22%) in East Anglia, the East Midlands or West Midlands, and 389 (45%) in the Southeast or Southwest. Three quarters (75%, n=638) were men and 14 individuals (2%) identified as trans. Most male participants (80%, n=511) identified as men who have sex with men (MSM), and female participants (6, n=199), as heterosexual. The majority (78%, n=499) of men identified as white British or Irish, and 70% (n=150) of women as black, Asian or minority ethnic (BAME). Over half of participants (52%) were between 35 and 50 years old. In the last 12 months, 38 individuals (4%) had injected recreational or performance drugs and 19 (2%) had been paid for sex. Hardship was not uncommon among people living with HIV in England; 27% (n=232) of people had struggled constantly or fallen behind on financial commitments in the last 12 months (35% among BAME participants and 36% of women). A third (31%) had sometimes or often gone short of food in the last year (38% of BAME participants and women respectively). 5 1% 6% White British / Irish Black/African/Caribbean Other white (not British/Irish) 29% 17% 24 and under 25-34 2 ETHNICITY 65% Mixed white, black, Asian Asian Any other AGE GROUP 35-50 Over 50 52% Figure 1. Demographics of participants 5 A quarter of participants in the North (25%) and in the East and Midlands (24%), and 30% of participants in the South, had constantly struggled with or fallen behind on bills in the last year. A third in all regions (30% in the North and in the East and Midlands, and 31% in the South) had sometimes or often gone short of food. 3/14
HIV testing, diagnosis and treatment The majority of participants in England had been diagnosed with HIV in the UK (89%), 8% of these in the last year. Most diagnosed in the past 5 years in the UK reported being tested for HIV voluntarily, while 32 (12%) participants felt they were made or pressured to take a test (no regional differences were observed). One participant stated they felt made to take a test for an overseas job application. 91% of participants were currently on antiretroviral treatment (ART); this was similar by gender, ethnicity and region, and to the overall population accessing HIV care in the UK. Of the 9% (n=66) who weren t on ART, 44 were men (40 MSM), 21 were women (12 BAME), and 1 was trans; 19 were diagnosed in the last year. 1% In the last year 8% 2010-2014 2005-2009 1995-2004 Before 1995 9% 26% 27% 29% 8% 12% Decision to test for HIV among those diagnosed in the UK in the last 5 years 79% Yes, 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 No response No response 1% 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 England (94%) 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. Over half of participants felt well supported upon informing someone of their status (Figures 4-8) and 46% felt empowered. A quarter of BAME participants (24%) had never discussed their diagnosis with anyone, compared to 12% of white UK-born people. I ve had my ups and downs, some guys will just straight away dismiss you and tell you that, no sorry they don t want to get involved, I don t want to catch it. Some will pretend that they are ok with it, but actually their actions are different Woman, 29 years old, black African ethnicity and living in Brighton, diagnosed 2007 It s always there in my mind. I get paranoid as well. I know that no one knows unless I tell them, but I m worried. Some generations think that there is a certain way that someone with HIV or AIDS should look. Now, with medication, we walk among them. That is always in my mind, even with perfect strangers Man, 35 years old, living in Fareham and diagnosed in 2004 4/14
Partners Three quarters (75%) of participants in England were sexually active in the last 12 months, two in five (39%) with only their main partner. Most reported their sexual partners were aware of their status; the majority of participants with only one sexual partner reported feeling well supported, while fewer of those with multiple partners felt good support. Family and friends Percentage of people Percentage of partners aware Percentage reporting good support Sexually active with only main sexual partner Main and others Multiple 14% 22% 39% 45% 51% 64% 69% 84% 90% Figure 4. Awareness of HIV status and support in sexual relationships Disclosure varied considerably among participants family and friends, with most having told someone. Three in five felt supported in either setting. I did feel at the time that having cancer is also a bit more acceptable than me telling them that I have HIV Man, 46 years old, living in Huddersfield, diagnosed 2001 I went to see him, and all he said was I think that s disgusting, you need to leave my house. That really stopped me from telling other people, it s only one day when I confided in another friend, that he went that s ridiculous, I wish you d have told me sooner Woman, 49 years old, white ethnicity and living in Bournemouth, diagnosed 2008 61% All Almost all Some None No response 62% 46% 62% 38% 18% 14% 28% 12% 16% 2 2% 2% Awareness among family Good support Awareness among friends Good support Figure 5. Awareness of HIV status and support among participants family members Figure 6. Awareness of HIV status and support among participants friends Workplace Almost half (47%) of the 594 participants currently working reported that someone in their workplace was aware of their HIV status and 64% felt well supported. In the last year, 82 (14%) had decided not to apply for, or turned down, employment or a promotion due to their status. The fear of people knowing is far worse than the [reality] of people knowing Man, 44 years old, white ethnicity and living in Liverpool diagnosed 2000 All Almost all Some None No response 6% 7% 34% 52% 1% Awareness among employers and / or co-workers 64% Good support Figure 7. Awareness of HIV status in the workplace 5/14
Faith One in five (22%) of the 348 participants who had ever been active in a religious community reported that at least one member of their faith group was aware of their status. Slightly more (26%) of the 192 participants active in a faith group in the last year reported someone in the community was aware. Around half of participants active in a religious community felt well supported. Ever active in faith community Active in the last 12 months 22% 22% 26% 40% 5 58% % of people Aware Good support Figure 8. Awareness of HIV status and support in faith settings Pressure to disclose to others Only main Main and others Multiple Despite high levels of awareness and support, not all participants felt completely in control of disclosure, with some feeling pressured to disclose their status to others in the last 12 months (Figure 9). Sexual partners Family Friends Workplace 2% 2% 2% 6% 7% 5% 11% Faith 0% Figure 9. Pressure to tell others in the last 12 months 3. Experiences of stigma and discrimination There are certain places where I won t talk Felt and experienced stigma are affected by many factors, including gender, sexuality, ethnicity about my status; I find it very difficult to talk and socioeconomic position, along with HIV status. The survey attempted to examine these about HIV in mainstream work places because layers of stigma and measure to what extent instances they of don t worry, know avoidance anything about and discrimination HIV. I find it could be attributed to participants HIV status. difficult because I am not being myself, I can t talk about myself. I have this part of my life A significant proportion had worried about that The I way hide that Woman, people 60 think years about old, black HIV, it s African almost being stigmatised, had avoided encounters or ethnicity that you and are living assumed in Scotland, to diagnosed have some 2003 sort had experienced discriminatory treatment in of dirty lifestyle Woman, 49 years old, white the last 12 months (Figure 10). Many felt this ethnicity and living in Bournemouth, diagnosed was mainly due to their HIV status (rather than 2008 other factors). 6/14
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: Gossip Sexual rejection Workplace treatment Job security Excluded - social gatherings Verbal harassment 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 3 % 4% 5% 5% 14% 12% 12% 15% 6% 12% 11% 8% 12% 3 10% % 28% 19% 29% 21% 19% 9% 18% 9% 9% 9% 7% 7% 2% 4% 2% 4% 48% 35% 46% 26% 24% 2 2 36% 22% 20% 26% 38% 51% Figure 10. Worry, avoidance and discrimination in the last 12 months Although most participants felt well supported by their partners, relationships provided one of the most common sources of worry in the last year. Over a third of participants feared being rejected by a sexual partner (35%) and had avoided sexual encounters (36%) in the last 12 months due to their status. A fifth (19%) had experienced sexual rejection in the last year due to their HIV. I go through that as well, thinking that people won t want me because I have HIV Man, 44 years old, living in Somerset, diagnosed 2005 It makes me [wary] of trying to form a relationship Trans woman, 58 years old, white ethnicity and living in the West Midlands, year of diagnosis unknown 7/14
3. Mental health and well being More than half of participants in England reported feeling positive about life (68%), in control of their health (62%) and as good as anyone else (57%) in the last 12 months. Regional variation in positive feelings was observed, with more of those in the East and Midlands feeling positive about life (78%) and as good as anyone else (67%), and fewer of those in the South (56%) feeling in control of their health. Yet, around half of participants in England overall reported feeling shame, guilt, low self-esteem and/or self-blame in relation to HIV doesn t exist in a vacuum, it feeds on things that are already there. There was already a lot of internalised stigma before I had HIV, I wasn t comfortable with my sexuality, with myself Man, 44 years old, white ethnicity and living in Liverpool, diagnosed 2000 I do self-stigmatise, Am I good enough? Outwardly, anyway, I m very committed to the fact that I don t hide it, and it s part of my mission to make it more normal and OK Man, 38 years old, white ethnicity and living in Suffolk, diagnosed 2013 their HIV status in the last 12 months; over a third (37%) had a poor self image. Negative feelings varied with time since diagnosis: half (51%) of those diagnosed in the past year had a poor self-image compared to a third (32%) of those diagnosed more than 5 years ago. Self-image also varied by region, with 41% of participants in the North reporting a poor self-image in the last 12 months (50% in the North West), compared to 29% of those in the East and Midlands, and 36% in the South. Knowing that I can t transmit the virus to my partner who is negative, because I have an undetectable viral load is beyond empowering, it has given me my sexual freedom back Woman, 38 years old, white ethnicity and living in West Yorkshire, diagnosed 2011 Overall, 17% of participants reported suicidal ideation. This was higher among those diagnosed in the past 12 months (31%) and varied by region; 21% of participants in the North, 11% of participants in the East and/ or Midlands, and 17% of participants in the South reported suicidal ideation in the last year. 4. Healthcare Almost all (91%) of participants in England stated that their GP was aware of their status, and three in five (59%) felt well supported upon sharing their status. Fewer reported that their dentists were aware (55%), yet a similar proportion (60%) felt well supported after disclosing. These proportions did not differ between regions. GP / Dentist aware No response GP / Dentist not aware Good support Good support 5% 7% Awareness & 4% 5% support in GP practice 91% 59% 21% Moderate Low None 40% Awareness & support in dental practice 56% 60% 22% Moderate Low None 9% 5% 7% No response 4% 10% 5% 4% No response Figure 11. Awareness and support in GP practice Figure 12. Awareness and support in dental practice 8/14
Nevertheless, a significant number of participants feared being treated differently to other patients in primary, and outpatient and inpatient, care. Moreover, 1 had avoided GP care when required, and 16% had avoided dental care. No regional differences were observed. When I went to a new dentist about a year ago, when filling out the forms, I didn t really want to get into the discussion, it just felt really awkward. And then there s also the concern: does it give them grounds to decline to treat you? Man, 41 years old, white ethnicity and living in Southampton, diagnosed 2012 Worried about being treated differently Avoided seeking care Felt refused or delayed treatment 40% 30% 1 16% 20% 21% 5% 6% 6% 2% 4% 4% 5% 4% GP Dental practice STI clinic Outpatient Inpatient Figure 13. Worry, avoidance and feeling refused in healthcare settings In the last 12 months, one in 10 (11%) felt pressured by a healthcare worker to inform others of their status while a small number of participants also reported a healthcare worker had discussed their status to others without their consent. 5. HIV and the law Twenty-three people ( of all participants in England) reported losing their job or another source of income due to their HIV status in the last 12 months, while one in eight (1) reported being denied insurance products (e.g. health, dental, life, or job protection) in the last year. Most (59%) 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 (66/91, 7) 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, feeling intimidated or scared to take action and/or insufficient financial resources. Less than one in five (17%) felt able to influence legal or rights matters affecting people living with HIV. Despite this, one third (35%) of all participants had tried to personally address an issue of HIV-related stigma or discrimination. 9/14
Investigation or prosecution relating to HIV transmission Nine people (1%) had been investigated by the police in relation to their HIV status in the past 12 months (6 in the Southeast, 2 in East Midlands in 1 in the North East). One person in Yorkshire was prosecuted in relation to their HIV status in the past 12 months. Overall, 87% of participants in England were aware that people have been prosecuted for recklessly transmitting HIV to a sexual partner. Nine in ten (89%) thought that both partners, regardless of HIV status, equally share responsibility for preventing transmission. However, one in four participants (2) believed that transmission of HIV should be a criminal offence; 38% were not sure. Two in five (41%) reported that the risk of criminal prosecution relating to HIV transmission had influenced decisions regarding disclosure of their status. 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 (58%) of participants had reported seeking support and almost a third (30%) had received support from a local HIV support organisation; this proportion was higher among participants diagnosed recently (39%), who had felt suicidal (48%) and who experienced HIV-related discrimination (40%) in the last year. Seeking support from local HIV organisation was also more common in the Northwest (39%) and Southwest (37%) and less so in the West Midlands (19%), Yorkshire (21%) and East Anglia (25%). One in five (18%) sought support online in the past year; only 10% of BAME individuals turned to online support. Despite 42% reporting they had not sought support of any kind, half of all participants reported offering emotional support to other people living with HIV in the last 12 months. Local HIV support organisation Online Peer group NHS patient support group Local policy organisation Faith group Community group None Overall 30% 18% 11% 8% 4% 1% 42% Diagnosed in last year 39% 25% 18% 7% 5% 0% 31% Table 2. Sources of support in the last 12 months 10/14
Actions that participants in England 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 (Figure 14). Education in schools Raising public awareness and knowledge 58% 68% 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 39% 3 29% 26% Advocating for and/or providing support to marginalised groups 11% Figure 14. Addressing stigma and discrimination for people living with HIV 11/14
Actions and Answers 8. Conclusions Overall, the survey findings show that stigma and discrimination continue to impact the lives of HIV positive people in the England today. Most people had told someone about their HIV status, yet there are still some who choose not to discuss their status, notably twice as many BAME as UK-born white individuals; this is an area that warrants further investigation, as there are clear psychological advantages to discussing one s status. Overall, the majority of participants reported good levels of support from those aware of their status. However, many worried about negative treatment, and some experienced HIV-related discriminatory treatment. Findings indicate that sexual relationships are particularly difficult to navigate for people living with HIV. Fear of sexual rejection was reported by a third, with fewer (one in five) reporting a partner had rejected them due to their status in the last year. Knowledge of undetectability could impact highly on the stigma felt by people living with HIV in sexual relationships, and further education regarding undetectability targeted at community members and the general public is important. Half of participants reported feelings of internalised stigma, and many had a poor self-image. This was especially pronounced among participants in the North of England. There is a need to improve support for people living with HIV throughout England, including the provision of psychological and peer support especially in the year after diagnosis. A third of participants stated they had gone without food and/or struggled to keep up with financial commitments in the last 12 months; economic hardship was particularly pronounced among BAME participants and women. 6 Further research on the linkages between poverty and at-risk populations, as well as the effect of poverty on adherence and health outcomes among people living with HIV, is recommended. Despite widespread awareness of anti-discrimination laws, seeking redress for discrimination was uncommon among participants. Organisations should ensure they have up-to-date non-discrimination policies in place. I wanted to be in control of my HIV and not have my HIV control me. That s kind of where I am now Woman, 49 years old, white ethnicity and living in Bournemouth, diagnosed 2008 A third had sought support from a local organisation in the last 12 months. Survey participants believe that stigma needs to be addressed across society, with public awareness campaigns and better HIV education in schools. 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 England. 6 See appendix for information on socioeconomic status 12/14
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 UK-born men and fewer women from black, Asian and other minority ethnic (BAME) communities among participants in England. Almost two thirds of participants were born in the UK and of white ethnicity. Seven out of ten participants in England (69%) were working at the time of the survey and 12% had been a volunteer in the last 12 months. 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. Overall about a third (34%) were in the lowest SES group, 24% were in the middle group, and 42% were in the highest SES group. Almost half (47%) of BAME participants and 27% of MSM were in the low SES group, while 47% of women compared to 30% of men had a low SES. Those who had been diagnosed less recently were more likely to be in the lowest SES group, as were those living in the South of England (39%). 29% 1 SECTOR OF EMPLOYMENT AT TIME OF SURVEY 34% Private sector Public sector Voluntary sector Not currently working 41% Socioeconomic status 35% Lower SES Mid-level SES Higher SES 24% 2 Figure 2. Sector of employment at time of survey (England, n=865) Figure 3. Socioeconomic status (England, n=865) Two in five participants (40%, n=348) had been active members of a religious community (68% of BAME individuals and 62% of women). One in five (22%) were active in the last 12 months. 85% of ever-active members identified as Christians (Figure 4). 16% of ever-active members (1 of men and 20% of women) had become more active in their faith since their diagnosis, 12% had become less active and 8% 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 49% 14% 4% 15% 11% 15% 13/14 Student Table 1. Employment status in last year (England, n=865)
About half (55%) of participants in England were in a relationship at the time of the survey (Figure 5). Almost a quarter (24%) did not have a sexual partner in the last 12 months. 1%1% 7% RELIGIOUS AFFILIATION AMONG THOSE EVER ACTIVE IN A FAITH SETTING 85% Christian Other Muslim Buddist Jewish Hindu Living with partner With partner (not living together) More than one partner Single/no relationship 1% 15% Figure 5. Relationship status at time of survey (England, n=865) 40% 44% Figure 4. Religious affiliation among those ever active in a faith setting (England, n=865) Supported by a grant from ViiV Healthcare 14/14