The field of human immunodeficiency virus (HIV) has undergone significant development since the first clinical observations of acquired immune deficiency syndrome (AIDS) in 1981. HIV has gone from being an almost invariably life-limiting disease to a life-changing chronic condition. Effective treatments have been developed, ensuring a very good prognosis for those diagnosed and treated early. Both the efficacy and tolerability of treatments have improved considerably over the years. HIV testing is widespread. More recently, unequivocal evidence has emerged showing that patients on effective antiretroviral therapy (ART) who have an undetectable HIV viral load cannot infect their sexual partners—popularly referred to as ‘undetectable=untransmittable’ or ‘U=U’. With the advent of pre-exposure prophylaxis (PrEP), an additional highly effective layer of protection against the virus has emerged.
These impressive developments in HIV medicine have paved the way for the ambitious aspiration, and genuine belief, that HIV can be eliminated. In 2014, the Joint United Nations Programme on HIV/AIDS (UNAIDS) set the ambitious 90-90-90 target, that is, for 90% of people living with HIV to be aware of their positive serostatus, for 90% of them to be on effective treatment, and for 90% of patients with diagnosed HIV to have an undetectable viral load. In 2018, it was confirmed that the United Kingdom (UK) had surpassed these targets, achieving 92-98-97, respectively (Public Health England, 2019). In 2019, Matt Hancock, the UK Secretary of State for Health and Social Care, declared the UK’s commitment to end all new HIV transmissions by 2030.1 Collectively, medical innovation, institutional commitment, and public aspiration may well make this commitment a reality. Yet, there remain at least two significant challenges to achieving this ambitious target, which constitute the foci of this volume.
First, it is clear that, while HIV patients are increasingly enjoying better physical health outcomes as a result of developments in HIV medicine, the unabating insidious stigma that surrounds the virus continues to cause psychological distress to those diagnosed and living with HIV. What is the impact of an HIV diagnosis on the identity of the individual? How does it affect their psychological well-being? How do HIV patients in distress cope and, perhaps more importantly, how can they be supported to cope effectively? These questions are important because existing research suggests that people with decreased psychological well-being are at greater risk of poor health outcomes (Jaspal & Lopes, 2020).
Second, not all groups in society experience HIV in quite the same way. There is evidence of health inequalities in minority groups—along the usual fault lines of ethnicity, sexuality and gender. Trans women—a key population in the HIV epidemic—face a major burden in relation to HIV infection. Global data show that they are much more likely to acquire HIV and that those who do are much less likely to be diagnosed early, to receive and adhere to treatment, and to experience as good a prognosis as patients from other groups in society (see Chapter 3). Trans women experience many other social and psychological stressors which can put them at disproportionately high risk of HIV but also of poorer general health outcomes.
This book focuses on the experiences, identities and psychological wellbeing of trans women living with HIV in the UK. It explores theory and research into HIV among trans women, on the one hand, and examines interview data from a sample of trans women living with HIV in the UK, on the other hand. Three key questions lie at the heart of this volume:
- How do trans women living with HIV experience their diagnosis and the ‘stressors’ associated with the condition?
- How do they perceive and manage HIV disclosure?
- How does the experience of living with HIV shape identity and psychological wellbeing among trans women?
Case Studies
In order to illustrate the significance of these questions, two case studies of trans women living with HIV are presented. The cases are real but individuals’ names have been replaced by pseudonyms and some details have been changed to prevent identification:
Case Study 1: Sally, a 51-Year-Old Trans Woman Living with HIV
Sally was assigned male sex at birth but, even as a child, felt like a girl. She never attempted to explain these feelings to her family or friends because she did not know how to and thought they wouldn’t understand. As an adolescent, Sally felt attracted to boys and thought that she might be gay. At the time, this was not socially acceptable but it felt more acceptable than telling people that she felt like a girl. Sally was rejected by her parents and bullied by her peers. She felt very lonely. At the age of 18, Sally left home and decided to transition away from her family. She met her former partner Jim with whom she started to use alcohol and recreational drugs. She became involved in sex work so that they could maintain their lifestyle. During the course of her work, Sally was violently assaulted several times. In the early 90s, Jim died of AIDS and that year Sally also tested positive for HIV. This added a further layer of complexity to her already complex life. Given that no HIV treatments were available at the time, Sally was told that she would probably not survive for much longer. Desolate and bereft, she confided in a friend who was sympathetic but concerned about catching HIV through even casual contact with her. Sally managed to survive long enough to receive HIV treatment when it was introduced in 1996. Although Sally is in relatively good physical health, she still feels traumatised by her near-death experience. She feels lonely and isolated and, given that she has never really been supported by others, is mistrustful of others. This is further compounded by the fact that she is often ridiculed by people in the street because she does not pass as a cisgender woman.
Case Study 2: Pritika, a 25-Year-Old Trans Woman Living with HIV
Pritika was born in India and moved to London to study at university. Pritika concealed from her parents the fact that she was trans because of the stigma surrounding hijras2 in India. When she started her university education, Pritika joined the lesbian, gay, bisexual and trans (LGBT) student society and befriended Jess, a trans woman, in whom she confided. Jess shared with Pritika her own story of transitioning at the age of 18 and provided her with support to begin her own gender transition. Away from her parents in India, Pritika felt empowered to think seriously about transitioning. Pritika went to see her GP but soon became frustrated with her GP’s response and the time the process was taking. Healthcare professionals did not seem to believe what she was telling them and kept on asking her if she was sure about her feelings. Dismayed at the medical response, she purchased hormones online and began to self-medicate. After a few months, she noticed some significant bodily changes which made her appearance feel more aligned to her gender identity. Pritika also met her boyfriend on a mobile social networking application and they developed a sexual relationship, rarely using condoms. She was not particularly knowledgeable about the risk of HIV given that the topic was never really discussed in India. A few months later, Pritika tested positive for HIV during a routine sexual health screening organised at her university. Her test result was confirmed at the local sexual health clinic and she was encouraged to begin HIV medication. However, Pritika was nervous about beginning treatment because of what she had heard about side effects and, especially, what the implications might be for her gender transition. Pritika preferred to focus on her transition, felt that h...