February 26, 2021, by School of Medicine

30 at 30: Transforming Healthcare: HIV  

February marks LGBT+ History Month, a time to learn about and acknowledge the history of LGBT+ people. We consider the marginalisation faced by this community, and the momentous strides taken towards equality, as well as acknowledging the remaining steps toward an equal future that we need to take. The LGBT+ community has long been viewed as a homogenous group of people who are other to “everyone else,” often perceived in only the stereotypes of effeminate, camp men and butch, masculine women, despite enormous variation of experiences, presentations, and identities across this community. LGBT+ history is vast and complex, especially around healthcare, with many key events taking place in the past 50 years. Homophobia in science, healthcare, policy, and the media played a key role in the AIDS epidemic of the 1980s representing AIDS as a ‘gay disease’, only serving to escalate discrimination and stigma and restrict medical intervention. HIV/AIDS has decimated the community, taking the lives of 32.7 million people, and directly impacting the lives of millions more since the condition was officially recognised 40 years ago. From this devastating loss of a generation, among LGBT+ people anyone older than 35 is typically considered a community “elder.” It is also vital to acknowledge the mental health impact of the AIDS crisis associated with this loss, and the pervasive homophobia surrounding it that our LGBT+ elders who lived through this traumatic time face. Although a strong stigma lingers around those most commonly affected by HIV, the healthcare available for people with HIV has improved enormously thanks to the persistence of LGBT+ activists and allies including groups like ACT UP and Queer Nation. Today HIV is treatable and more manageable, with many people living long lives with the condition. With effective treatment lowering the viral load of HIV, an undetectable viral load means the virus is untransmissible through sex, significantly lowering the rate of transmission. The homophobic attitudes towards AIDS in the UK were in no way helped by the enactment of Section 28 in 1988 which criminalised any suggestion that homosexuality is acceptable. This legislation restricted any positive representation of LGBT+ people and the vital message of acceptance, particularly in education settings. Multiple legal attacks were made using Section28 stopping the funding of some HIV/AIDS focussed public health initiatives. Today, the discourse around Gender Recognition Reform reflects the rhetoric around Section 28, suggesting we could be approaching another era of censorship and bigotry under the guise of protecting children. It can be truly challenging to repeatedly have your identity, legal rights, and sense of belonging questioned and ridiculed by the national media or even by those who should be our advocates. At times it can feel like history repeats itself within this community, as battles once faced by LGB people, are now redirected towards transgender and non-binary people. As well as the re-emergence of possible censorship, LGBT+ people have faced pathologisation with homosexuality included in the DSM until the 3rd edition in 1974 only removed following the incredible activism of the Gay Liberation movement of the late 60s to mid-80s. Meanwhile transgender people remain pathologised in the ICD-11 with the diagnosis of ‘gender incongruence’, previously listed as Gender Identity Disorder. Although at present this diagnosis for gender incongruence can enable access to medical intervention to reduce gender dysphoria, it is likely this pathological perspective will evolve further in the next 50 years. As LGBT+ visibility is increased with the age of the internet, and access to equal rights has improved through the Marriage (Same Sex Couples) Act 2013 and the Equality Act 2010 in the UK, it is easy to believe we have made it to a point of equality and homophobia is a thing of the past. However, there is still a long way to go in the fight for equality. Homophobia and transphobia are still common within society, negatively impacting the health, wellbeing, and livelihoods of LGBT+ people. Despite repeated condemnation of harmful conversion ‘therapy’, this remains legal in the UK. In healthcare, homophobic prejudice is demonstrated by 14% LGBT+ people including over 30% of trans and non-binary people delaying or avoiding accessing healthcare services because they anticipate discrimination and mistreatment from healthcare professionals. This anticipatory concern is not unfounded with Stonewall’s LGBT in Britain report 2018 finding 25% of LGBT+ people experience inappropriate curiosity from clinicians, 10% have been outed by healthcare staff without their consent, while 16% of trans people and 2% of cisgender LGB people have been refused healthcare for being LGBT+. The future of LGBT+ inclusive healthcare needs to advocate for equitable treatment of LGBT+ patients and carers, ensuring equal access to healthcare services free from discrimination and prejudice – something we certainly do not yet provide. Although some LGBT+ history is behind us, much of it continues to be made today and tomorrow. The healthcare community is not an innocent party in LGBT+ history nor in the present experiences of LGBT+ people, but it could become a key ally in the future with the dedicated support of all healthcare professionals.

Russell T Davies’ Channel 4 dramatization “It’s a Sin!” takes us back to the early 1980s when HIV was beginning to impact on the United Kingdom and the rest of the world. As a student nurse during these times, it brought back many memories of the early days of the virus and the confusion and misunderstandings that took place both within healthcare and within wider society. Whilst thought to be more historical in nature, most reports began in 1981 with the identification of Pneumocystis carinii pneumonia and an aggressive form of cancer, Kaposi’s sarcoma, being identified in previously healthy young gay men. In 1982 another group of young gay men presented with severe immunodeficiency, which was believed to be sexual in nature leading to the term Gay-Related Immunodeficiency Disease. In the same year in Africa, Uganda reported a fasting disease that was occurring in individuals and it was termed ‘slim’. In the US the Centre for Disease Control believed these to be similar in approach and coined the term Acquired Immune Deficiency Syndrome or AIDS to explain the variety of symptoms that appeared to be linking the diseases together. In 1983 the Pasteur Institute in France discovered a new retrovirus that they believed could be the cause of AIDS called Lymphadenopathy-Associated Virus (LAV) and a year later the National Cancer Institute announced they had found the cause of AIDS to be a retrovirus named HTLV-lll. In joint statement in 1984 both Institutes agreed that LAV and HTLV-lll were the same retrovirus and two years later the International Committee on the Taxonomy of Viruses stated that the virus will now be known as Human Immunodeficiency Virus or HIV. 

The nursing and medical treatment of individuals of HIV in these early times was a response to the symptoms that individuals presented with. Unfortunately, many found their immune system so deficient that they lost their lives and staff provided excellent end of life care, changing much in the end of life care landscape. Patients with HIV became pioneers for others who came after them and volunteered to undertake early drug and treatment trials without any full understanding of whether they were going to be effective. These trials could sometimes be painful or exacerbate their symptoms as researchers attempted to find the best ways to cure the disease. Nurses started to expand their knowledge of care and took risks with their patients to ensure their final days of life were full of compassion, caring and love. It was not unusual to see HIV care being provided by staff without uniforms to help reduce the barriers between the patient and the nursing staff. Nursing and Medical Staff also encouraged patients to explore their bucket lists as much as possible. Jane Bruton, a ward sister on a HIV ward in London at the time, tells how she supported a patient to ride on the back of a motorcycle despite him being sick and dying a few days afterwards because it was one of his strongest desires (YouTube: AIDS: Doctors and Nurses tell their Stories 2017). 

The introduction of antiretroviral therapies began to change the landscape of HIV as numbers continued to grow and, as more medications became available, combined treatments or Highly Active Antiretroviral therapies started to have a more positive effect on maintaining the health of individuals, allowing longer life expectancies and reduced episodes of accompanying ill health. As therapies and regimes became more sophisticated, an announcement in 2008 by a group of Swiss Physicians made the world start to consider HIV in a different light. They announced that someone on antiretroviral therapies, who maintained an undetectable viral load for six months and who engaged with health care could not transmit the virus to another person. Nearly 10 years later, organisations across the world endorsed the message that Undetectable = Untransmissible (U=U). This anti-stigma slogan has become the statement of HIV care and yet there are still individuals who are unaware of its meaning or existence. In a recent THT survey, they found that only 19% of the population were aware of U=U and what it means.  

In the United Kingdom, new transmissions of HIV have begun to decrease. According to Public Health England at the end of 2019 there was a 40% decrease in transmissions among men who have sex with men and a 33% reduction in transmission among individuals who engaged in heterosexual sex. HIV is now considered a long-term condition and nursing staff focus their care on health maintenance and health prevention activities, exploring the impact of health inequalities on their clients. 

Over this period, I have been fortunate to serve as an active member of the National Association of HIV Nurses. Our development of research, education and clinical practice for nurses caring for people with HIV has changed focus to meet the continuing transformation of this speciality and those individuals we support. I am extremely grateful to the clients I have met along my journey in HIV care and their willingness to better the care and experiences of those coming after them. I am also proud to say that I worked alongside some of the most prominent nurses, doctors and other health professionals in HIV care in the United Kingdom and other parts of the world. I look forward with hope and enthusiasm to the future of HIV nursing and medicine to see where we can take it from here. This virus, and its effects on people, has definitely led to a transformation in healthcare that is still taking place. 

By John McLuskey, Associate Professor/ Director of Undergraduate Education, School of Health Sciences

Posted in 30 Years of Nursing