World AIDS Day is a vital opportunity to raise awareness about HIV/AIDS and honour those whose lives have been affected by the disease. Professor Alan Winston from the Department of Infectious Disease explores how language and scientific definitions have contributed to the stigmatisation of those living with the disease and emphasises the need for person-centred language and thoughtful scientific communication to reduce discrimination in medicine and medical research.
The initial fear
Since AIDS–Acquired Immune Deficiency Syndrome–was first identified in the 1980s, along with its underlying cause–the Human Immune Deficiency virus (HIV)– people living with HIV have encountered immense discrimination and stigma. Whilst this was partly driven by fear of the disease itself and the devastating clinical consequences of HIV without treatment, we should acknowledge that both physicians and scientists have contributed to this stigma. Here, I highlight how this has been mediated through language and scientific definitions. Although these contributors have likely not been intentional, going forward, we need to learn from past experiences and carefully consider how, as clinicians, clinical researchers and scientists, our work can focus on reducing the stigma and discrimination that has surrounded HIV for so many decades.
Person-centred language
The language we use both socially and in science and medicine has dramatically shifted over recent decades. In June 1981, the US Centres for Disease Control and Prevention published a report describing five cases of AIDS-related pneumonia, describing these individuals as ‘active homosexuals’. Whilst we can all clearly appreciate this language was stigmatising, harmful, and would not be used in contemporary scientific reports today, I would highlight that what we consider to be modern appropriate language and what we read in many scientific journals still requires substantial improvement.
One approach to enable such improvement is person-first language, which takes the approach, as the names suggests, of putting the person first, rather than a disease or condition. In the context of HIV, such language refers to a person who is living with HIV rather than an ‘HIV-infected’ or ‘HIV-positive’ individual, which dehumanises the person, reducing them to a condition or infection, and perpetuates stigma by failing to recognise their humanity. Person-first language is by no means new; however adoption of this language into scientific outputs has been slow, and even in HIV-specific journals, it has only been implemented recently. Part of our duty is to ensure such appropriate wording is relayed across the wider scientific literature and to ensure that in journals that have yet to formally adopt this language, our writing is person-centred.
Another important consideration is regarding how we refer to people who do not have HIV in the scientific literature. Frequently, terms like ‘healthy controls’ are used. Whilst this may appear innocuous at first, the term ‘healthy’ is not only misleading but has other connotations. I highlight that this term is misleading as often in studies, control populations have minimal medical screening, so to state that such individuals are healthy is an assumption that should not be made. This term also suggests that peoples with HIV may not be healthy. For most people with HIV on antiretroviral therapy, life expectancy is very similar to that of the general population, so why would we refer to control populations in clinical research as ‘healthy’ controls? A term with less stigmatising language, and a person-first term, such as a control participant without HIV, would avoid such connotations.
Inadvertent use of definitions
One aspect of my clinical work and research is brain health in people with HIV. Thankfully, in recent years, with the advent of effective HIV-treatment, cases of HIV-associated dementia have become rare, except in people who present with very advanced disease. This is one of the great success stories of modern HIV treatment. However, some people with HIV on effective antiretroviral treatment do experience symptoms of cognitive decline.
In an attempt to categorise such symptoms and move away from the historical AIDS-dementia classification, a new criterion was proposed in 2007 to define cognitive health in person with HIV, known as the HAND criteria (HIV-associated neurocognitive disorders). Although this classification was proposed by the scientific community with the best intentions, the definition was based on formal cognitive testing rather than on an individual’s symptoms, and inadvertently classified around 40% of persons with HIV as having a cognitive disorder. The actual burden of mild cognitive impairment in any population, including people with HIV, is challenging to ascertain, with the true burden in people with HIV likely well below 5%.
This classification understandably led to anxiety for communities living with HIV regarding cognitive health and has also led to direct discrimination and stigma in the workplace. For example, the UK Civil Aviation Authority until recently required pilots with HIV—despite being otherwise physically well—to undergo additional medical screening, partly due to concerns about HAND, which differed from the standard screening for pilots without HIV. In South Africa, recent publications citing these criteria have raised concerns regarding the cognitive ability of long-distance drivers who are living with HIV to undertake their working roles safely.
Although significant flaws in this definition have been recognised for many years, it has taken almost 20 years to establish an international working group to propose a clinically relevant definition, to move away from such criteria, and fully appreciate the negative and stigmatising consequences this has had for persons with HIV.
Reflecting on our roles
Sadly, HIV is still surrounded by mysteries and stigma. As clinicians and scientists, part of our role is to be advocates for the populations we care for and the clinical conditions our research focuses on. We all need to be cognisant that the way we express our work, and the formats we use to exchange our work, have wider implications, and we should utilise all tools available to reduce stigma, both for people with HIV and other marginalised populations.