HIV in the UK: Changes and challenges; actions and answers The People Living With HIV Stigma Survey UK 2015 Transgender and non-binary participants STIGMA SURVEY UK 2015
Transgender and non-binary participants 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. HIV positive trans people may be stigmatised based on their gender identity in addition to their HIV status. I am a trans woman. People are still afraid of things they do not understand Trans woman, 50 years old,white non-british ethnicity and living in Scotland, diagnosed 2000 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 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. With 31 trans participants out of the 1576 people who completed the survey, these findings provide an initial understanding of the lived experiences of HIV-positive trans people in the UK today. 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). 2/12
Summary of findings in this report Trans participants continue to experience HIV-related stigma and discrimination in both social and healthcare settings Anticipated stigma in sexual relationships was most commonly reported Less than half of all trans participants felt well supported in primary care settings Around half of trans participants reported negative feelings related to their HIV, or internalised stigma, in the last 12 months, comparable to the overall population A third had sought support from a local HIV organisation in the last year, similar to participants overall Changes and challenges 1. Who took part? Of the 1576 participants that took part in the survey, 31 were trans (2%). This proportion is higher than the number of people seen for HIV care in the UK in 2015 who identified as trans (0.1%). Almost half of trans participants were between 35 and 50 years old. 84% (n=26) reported having sex with men, and 48% (n=15) were black, Asian or minority ethnic (BAME). Of the trans participants surveyed, (n=4) had been paid for sex in the last 12 months, and (n=2) had injected recreational drugs in the last 12 months. It is important to note that being paid for sex and injecting drug use can be a risk factor in a number of communities. Hardship was not uncommon among trans people living with HIV; a third (35%, n=11) reported sometimes or often going short of food, while a quarter (2, n=7) struggled constantly to keep up or had fallen behind on financial commitments in the last 12 months. 5 This was not dissimilar to the overall survey population. 7% GENDER 61% Trans female Trans male Gender queer/non binary Other 7% ETHNICITY White British Black/African/Caribbean Mixed white, black, Asian Asian Other white (not British/Irish) Other Missing 7% AGE GROUP 48% 24 and under 25-34 35-50 Over 50 Missing Figure 1. Participant demographics HIV testing, diagnosis and treatment The majority (77%, n=24) of trans participants had first been diagnosed with HIV in the UK. Over three-quarters of these had been diagnosed more than five years ago (this is comparable to UK-wide surveillance data). Of the 4 participants diagnosed in the UK in the last 5 years, 2 reported being tested voluntarily and 2 stated they were tested without their knowledge. The majority (81%, n=25) were currently on antiretroviral treatment. This is slightly lower than the overall population accessing HIV care in the UK, however only 3 participants stated they were not on antiretroviral treatment and 3 did not respond. 5 More demographic information is available in the appendix. 3/12
In the last year 0% 2010-2014 17% 2005-2009 38% 1995-2004 25% <1995 No response 29% Figure 2. Time since diagnosis in the UK I think people are surprised, and knowing that someone like me can be HIV positive seems to open up people s thinking - they consider my circumstances (infected through rape) and think about how it isn t something people bring upon themselves Gender queer/ non-binary, 23 years old,living in Scotland, diagnosed 2010 2. Telling others Almost all trans participants (87%, n=27) 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. Many participants felt well supported upon telling someone (Figures 3-7) and around (n=13) felt empowered by sharing their status. Partners 81% (n=25) of trans participants were sexually active in the last 12 months, (n=13) with only their main partner. A high proportion of partners were aware of participants HIV status (Figure 6). Overall, participants felt well supported upon sharing their status. Family and friends Disclosure among family and friends varied considerably. Over half of participants felt well supported upon sharing their status in these settings. Sexually active with only main sexual partner Main and others Multiple 2 40% 58% 60% 71% 92% 100% Percentage of people Percentage of partners aware Percentage reporting good support Figure 3. Awareness of HIV status and support in sexual relationships [Disclosing] has strengthened some of my most important relationships Trans woman, 43 years old, white British ethnicity and living in East Midlands, diagnosed 2012 All Almost all Some None No response 48% 52% 61% 48% 52% Awareness among family Good support Figure 4. Awareness of HIV status and support among participants family members Awareness among family Good support Figure 5. Awareness of HIV status and support among participants friends Faith Aware Good support 7 of the 12 participants (58%) of who were active in a religious community reported that someone in the community was aware of their status and over half felt well supported. Of the 6 participants active in the last 12 months, 3 reported that someone was aware of their status, and 2 of these felt well supported. Ever active in faith community Active in the last 12 months 50% 58% 57% 6 Figure 6. Awareness of HIV status and support in faith settings 4/12
Workplace Over half (5, n=10) of the 19 participants currently working reported that someone in their workplace was aware of their HIV status, while 80% (n=8) felt good support. However, in the last year, 6 people () had decided not to apply for, or turned down, employment or a promotion due to their HIV status, compared to 12% of all participants. 80% 37% 47% All Almost all Some None I don t think I would have kept my job, I think schools just don t deal with difficult things very well Trans woman, 51 years old, white British ethnicity and living in London, diagnosed 1992 11% 5% 0% No response Awareness among employers and / or co-workers Good support Figure 7. Awareness of HIV status and support in the workplace Pressure to tell others Despite high levels of awareness and support, not all participants felt completely in control of telling others about their HIV status, with 2 (n=8) reporting pressure from family members and 20% (n=6) reporting pressure from sexual partners to inform others of their status in the last 12 months. These proportions were higher among trans participants than in the overall sample. 5 Only main Main and others Sexual partners 5% 15% Family 2 Friends Workplace Faith Figure 8. Pressure to tell others in the last 12 months 3. Experiences of stigma and discrimination Felt and experienced stigma are affected by many factors. The survey attempted to examine these layers of stigma and measure to what extent instances of worry, avoidance and discrimination were due to participants HIV status A significant proportion had worried about being stigmatised, had avoided encounters or had experienced discriminatory treatment in the last 12 months (Figure 9). Many felt this was mainly due to their HIV status (rather than other factors), but this varied across questions. I ve been positive now for nearly most of my life and the stigma is still as it was, it s just my living outcomes are better now Trans woman, 51 years old, white British ethnicity and living in London, diagnosed 1992 Because I have this kind of intersexual duality of being trans and being HIV+, people ask me if I ve been involved in sex work, people have no concept of the reality Trans woman, 51 years old, white British ethnicity and living in London, diagnosed 1992 5 See national report card for comparison 5/12
In the last 12 months... % of all who report experience due to HIV % of all who answered yes Gossip Sexual rejection 2 2 Have you worried about: Verbal harassment Excluded - family gatherings Job security 39% 35% 29% Excluded - social gatherings 2 29% Workplace treatment Physical assault Avoided sex 39% 55% Avoided family gatherings Have you: Avoided social gatherings Avoided employment / promotion Left a job / income source 29% Gossip Sexual rejection 25% Verbal harassment 25% Excluded - family gatherings 2 Have you experienced: Job change - consensual Excluded - social gatherings Refused employment / promotion Lost job Physical assault Job change - against wishes Figure 9. Worry, avoidance and discrimination in the last 12 months Although most participants felt supported by their partners, relationships provided one of the most common sources of worry in the last year. Many feared being rejected by a sexual partner (2, n=8) and had avoided sexual encounters (39%, n=12) due to their HIV status in the last 12 months, while fewer (, n=5) had been rejected by a partner. It makes me [wary] of trying to form a relationship Trans woman, 58 years old, white British ethnicity and living in West Midlands, year of diagnosis unknown A higher proportion of trans participants reported being excluded from family gatherings (2 and 9% respectively) and experiencing physical assault ( and 5%) (Figure 10). However, due to the low number of trans participants in relation to the overall number of participants, all comparisons should be treated with caution. 6/12
Trans participants who reported discrimination Trans participants who attributed discrimination to their HIV 45% 40% 39% All participants who reported discrimination All participants who attributed discrimination to their HIV 35% 30% 25% 20% 15% 5% 25% 30% 25% 20% 19 2 9% 9% 8% 8% 5% 5% 0% Gossip Sexual rejection Verbal harassment Job change Excluded - consensual family gatherings Excluded social gatherings Lost job Refused employment /promotion Phusical assault Job change - against wishes Figure 10. Discrimination in the last 12 months: trans and all participants 4. Mental health and well being Over two fifths of trans participants reported feeling positive about life (45%, n=14) and as good as anyone else (45%, n=14), while over half felt in control of their health (58%, n=18) in the last 12 months. Yet, around half of trans participants reported feeling shame, guilt, and low self-esteem in relation to their HIV status in the last 12 months, comparable to the overall study sample. 35% (n=11) had a poor self-image in relation to their HIV. Overall, (n=4) of participants reported suicidal ideation in the last 12 months (compared to 18% of participants overall in relation to their HIV). 5. Healthcare Of the 74% (n=23) who reported that their GP practice was aware of their status, 4, (n=10) felt well supported (Figure 11). Fewer, (58%, n=18) reported that their dental practice was aware, and fewer felt well supported (3, n=6) (Figure 12). [Whenever] under pressure to disclose to a new GP, I often feel judged and ashamed Trans woman, 37 years old, black African ethnicity and living in the North West, diagnosed 2006 GP / Dentist aware No response GP / Dentist not aware Disclosure & support in GP practice 74% 4 22% 22% 9% 4% Good support Moderate Low None No response Disclosure & support in dental practice 58% 3 17% 3 11% Good support Moderate Low None No response Figure 11. Disclosure and support in GP practice Figure 12. Disclosure and support in dental practice 7/12
In the last 12 months, 48% (n=15) and 45% (n=14) of all trans participants worried about being treated differently to other patients at their general and dental practice respectively, 2 (n=7) avoided seeking care in either setting when required, and (n=5) and 2 (n=7) felt their treatment had been delayed or refused respectively. A similar trend was found in other health care settings with the exception of sexual health clinics (Figure 13). The proportion of trans participants who worried, avoided or were treated differently in healthcare settings was higher than that of all participants. 6 Almost 2 in 10 () felt pressured by a healthcare worker to disclose their status to others in the last 12 months. 48% Worried about being treated differently Avoided seeking care Felt refused or delayed treatment 45% 2 2 2 2 29% 0% GP Dental practice STI clinic Outpatient Inpatient Figure 13. Worry, avoidance and feeling refused in healthcare settings 11 trans participants reported a healthcare worker had discussed their status with another healthcare worker without their consent in the last 12 months 6. HIV and the law Challenging discrimination Two trans participants () reported being denied insurance products (e.g. health, dental, life, or job protection) in the last year. When approached about life insurance as soon as I [disclosed] that I had [HIV] they put the phone down Trans woman, 58 years old, white British ethnicity living in West Midlands, year 6 See national report card for comparison 8/12
Most (71%, n=22) were aware of the Equality Act 2010, which provides protection against discrimination for people living with HIV in England, Wales and Scotland. However, the three participants () 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, fear of media attention and/or insufficient financial resources. Less than one in five (18%, n=5) felt able to influence legal or rights matters affecting people living with HIV. Despite this, one third (n=10) of all participants had tried to address an issue of HIV-related stigma or discrimination, while 2 (n=8) had been involved in a programme or project providing assistance to people living with HIV. Investigation or prosecution relating to HIV transmission One of the survey s trans participants had been investigated by the police in relation to their HIV status in the last 12 months. No trans participants was prosecuted in relation to their HIV status in the last 12 months. Overall, 87% (n=27) of participants were aware that people have been prosecuted for recklessly transmitting HIV to a sexual partner. 8 (n=26) thought that both partners, regardless of HIV status, equally share responsibility for preventing transmission. However, one in four participants (n=8) believed that transmission of HIV should be a criminal offence; 39% (n=12) were not sure. Two in five (n=12) reported that the risk of criminal prosecution relating to HIV transmission has influenced decisions regarding disclosure of their status When we were going to [ ] court, my barrister, who was a top barrister said, we re going to keep secret that you re HIV [positive]. Everything else is going to come out, but we ll keep that secret. I asked why [ ] and he said because it creates a moral picture of you. It won t be helpful in court, it incensed me that in [ ] 2012 [ ] that would still be the case, and he was a top barrister, he was a human rights barrister and he was speaking the truth in a sense Trans woman, 51 years old, white British ethnicity and living in London, diagnosed 1992 7. Support and advocacy Participants were asked whether they had sought support in relation to their HIV in the last 12 months. Overall around two thirds of trans participants had reported seeking support and almost a third (, n=10) had received support from a local HIV support organisation; half of participants who had felt suicidal (n=2) and one quarter of those who experienced HIV-related discrimination (n=5) had sought support from a local HIV organisation in the last 12 months. Local HIV support organisation Online Peer group NHS patient support group Local policy organisation Faith group Community group None Table 2. Sources of support Trans participants (n=31) 9/12 All participants (n=1576) 30% 11% 5% 2% 1% 3
Despite (n=10) reporting they had not sought support of any kind, 65% (n=20) of trans participants reported offering emotional support to other people living with HIV in the last 12 months I run groups for newly diagnosed people, helping others with their diagnosis also helps me Trans woman, 58 years old, white British ethnicity and living in London, diagnosed 1985 Actions for which people would most like to advocate are HIV education in schools, and raising public awareness and knowledge (Figure 14). More trans participants believed that advocating for and/or providing support for marginalised groups was important than participants overall ( and 11% respectively). Education in schools Raising public awareness and knowledge Advocating for and/or providing support to marginalised groups Providing support (emotional, physical and referral) Advocating for the rights of all people living with HIV 35% 52% Advocating for evidence-based media coverage of HIV Educating people living with HIV about living with HIV 2 2 Figure 14. Addressing stigma and discrimination for trans people living with HIV 10/12
Actions and Answers 8. Conclusions Survey findings show that trans people generally are more vulnerable to HIV-related stigma and discrimination than other HIV positive people. The majority of trans people indicated that they had told someone in their social or professional circle about their HIV status. Comparable to the overall study population, more than half of trans participants felt supported upon telling someone. However, twice as many trans people reported being physically assaulted compared to other people living with HIV, and almost three times as many had been excluded from family gatherings because of their status. Trans participants most commonly reported avoiding sexual encounters, comparable to participants overall, and fear of sexual rejection, with fewer having actually experienced sexual rejection. Around half of trans participants reported feelings of internalised stigma, indicating a need for psychosocial services, notably quality peer support. Some trans people reported they had not informed their GP or dentist about their status, while less than half of those who had disclosed felt supported. Additionally, around half feared being treated differently in primary care. GP and dental staff could engage in HIV competency training to help reduce avoidance of care among trans individuals. Most trans participants believe efforts to address stigma and discrimination should focus on better HIV education in schools, raising public awareness, and advocating for and supporting marginalised groups of people living with HIV. Furthermore, a broader understanding of the needs of HIV positive trans people is required is necessary to successfully challenge HIV-related stigma and discrimination. 11/12
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. Forty qualitative interviews were also conducted with a representative sample of people living with HIV in the UK. 27% 8% SECTOR OF EMPLOYMENT AT TIME OF SURVEY 21% 31% Private sector Public sector Voluntary sector Not currently working No response Figure 1. Sector of employment at time of survey (n=31) Seven out of ten trans participants (71%) were working at the time of the survey and 12% had been a volunteer in the last 12 months. 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 (35%) were in the lowest SES group, 2 were in the middle group, and 39% were in the highest SES group, comparable to the overall study population. 41% Socioeconomic status 35% Lower SES Mid-level SES Higher SES Two in five participants (39%, n=12) had been active members of a religious community. (n=6) were currently active members. Of those who had ever been an active member of a religious community, 10 participants (8) identified as Christians. 77% (n=24) of participants were in a relationship at the time of the survey (Figure 19). 2 Employment Status Percentage Figure 2. Socioeconomic status (n=31) Employed full time 45% Employed part time Living with partner With partner (not living together) Casual work Unemployed 2 More than one partner 2% Volunteering Single/no relationship Figure 5. Relationship status (n=31) Sick/disabled Looking after home Retired Student Table 1. Employment status at time of survey (n=31) Supported by a grant from ViiV Healthcare 12/12