{"id":4946,"date":"2024-11-29T16:26:26","date_gmt":"2024-11-29T16:26:26","guid":{"rendered":"https:\/\/blogs.imperial.ac.uk\/imperial-medicine\/?p=4946"},"modified":"2024-11-29T16:41:34","modified_gmt":"2024-11-29T16:41:34","slug":"how-medicine-has-contributed-to-hiv-stigma","status":"publish","type":"post","link":"https:\/\/blogs.imperial.ac.uk\/imperial-medicine\/2024\/11\/29\/how-medicine-has-contributed-to-hiv-stigma\/","title":{"rendered":"How medicine and medical research has contributed to HIV stigma\u2013and how we challenge it"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" width=\"1181\" height=\"660\" class=\"size-full wp-image-4947 aligncenter\" src=\"https:\/\/blogs.imperial.ac.uk\/imperial-medicine\/files\/2024\/11\/Alan.png\" alt=\"Alan Winston\" \/><\/p>\n<p><strong><span class=\"TextRun SCXW134386166 BCX4\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW134386166 BCX4\">World AIDS Day<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\"> is a <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">vital opportunity<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\"> to raise awareness about HIV\/AIDS and hono<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">u<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">r those <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">whose lives <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">have been <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">a<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">ffected by the disease. <\/span><\/span><a class=\"Hyperlink HyperlinkGateOff SCXW134386166 BCX4\" href=\"https:\/\/Professor Alan Winston\" target=\"_blank\" rel=\"noreferrer noopener\"><span class=\"FieldRange SCXW134386166 BCX4\"><span class=\"TextRun Underlined UnderlinedGateOff SCXW134386166 BCX4\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW134386166 BCX4\" data-ccp-charstyle=\"Hyperlink\">Professor Alan Winston<\/span><\/span><\/span><\/a><span class=\"TextRun SCXW134386166 BCX4\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"> <span class=\"NormalTextRun SCXW134386166 BCX4\">from the <\/span><\/span><a class=\"Hyperlink HyperlinkGateOff SCXW134386166 BCX4\" href=\"https:\/\/www.imperial.ac.uk\/infectious-disease\/\" target=\"_blank\" rel=\"noreferrer noopener\"><span class=\"FieldRange SCXW134386166 BCX4\"><span class=\"TextRun Underlined UnderlinedGateOff SCXW134386166 BCX4\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"none\"><span class=\"NormalTextRun SCXW134386166 BCX4\" data-ccp-charstyle=\"Hyperlink\">Department of Infectious Disease<\/span><\/span><\/span><\/a><span class=\"TextRun SCXW134386166 BCX4\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"> <span class=\"NormalTextRun SCXW134386166 BCX4\">explores <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">how language and scientific definitions have contributed to <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">the <\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">stigma<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">tisation<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\"> of those li<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">ving with the disease<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\"> and emphasi<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">s<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">es the need for person-<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">centred<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\"> language and thoughtful scientific communication to reduce discrimination in medicine and medical research<\/span><span class=\"NormalTextRun SCXW134386166 BCX4\">.<\/span><\/span><span class=\"EOP SCXW134386166 BCX4\" data-ccp-props=\"{}\">\u00a0<\/span><\/strong><\/p>\n<hr \/>\n<h2><span data-contrast=\"auto\">The initial fear<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h2>\n<p><span data-contrast=\"auto\">Since AIDS\u2013Acquired Immune Deficiency Syndrome\u2013was first identified in the 1980s, along with its underlying cause\u2013the Human Immune Deficiency virus (HIV)\u2013 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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><!--more--><\/p>\n<h2><strong>Person-centred language\u00a0<\/strong><\/h2>\n<p><span data-contrast=\"auto\">The language we use both socially and in science and medicine has dramatically shifted over recent decades. In <\/span><span data-contrast=\"none\">June 1981, the US Centres for Disease Control and Prevention<\/span><span data-contrast=\"auto\"><a href=\"https:\/\/stacks.cdc.gov\/view\/cdc\/50022\"> published a report<\/a> describing five cases of AIDS-related pneumonia, describing these individuals as \u2018active homosexuals\u2019. 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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">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 \u2018HIV-infected\u2019 or \u2018HIV-positive\u2019 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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Another important consideration is regarding how we refer to people who do not have HIV in the scientific literature. Frequently, terms like \u2018healthy controls\u2019 are used. Whilst this may appear innocuous at first, the term \u2018healthy\u2019 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 \u2018healthy\u2019 controls? A term with less stigmatising language, and a person-first term, such as a control participant without HIV, would avoid such connotations.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h2><span data-contrast=\"auto\">Inadvertent use of definitions<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h2>\n<p><span data-contrast=\"auto\">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. <\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">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\u2019s 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%.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">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, \u00a0the <\/span><a href=\"https:\/\/ukc-word-edit.officeapps.live.com\/we\/wordeditorframe.aspx?ui=en-US&amp;rs=en-US&amp;wopisrc=https%3A%2F%2Fimperiallondon.sharepoint.com%2Fsites%2FFoMDigitalOperations%2F_vti_bin%2Fwopi.ashx%2Ffiles%2Fa7dcdca881844f66b51ce6e0a582551c&amp;wdlor=c2BDBCD8E-2605-E14B-8E7D-2CED6720E9D7&amp;wdenableroaming=1&amp;mscc=1&amp;hid=5D1A4967-0E8A-476B-951C-D332DC9C348B.0&amp;uih=sharepointcom&amp;wdlcid=en-US&amp;jsapi=1&amp;jsapiver=v2&amp;corrid=0ba4f21f-931d-9b87-6306-62a0205f3c1d&amp;usid=0ba4f21f-931d-9b87-6306-62a0205f3c1d&amp;newsession=1&amp;sftc=1&amp;uihit=docaspx&amp;muv=1&amp;cac=1&amp;sams=1&amp;mtf=1&amp;sfp=1&amp;sdp=1&amp;hch=1&amp;hwfh=1&amp;dchat=1&amp;sc=%7B%22pmo%22%3A%22https%3A%2F%2Fimperiallondon.sharepoint.com%22%2C%22pmshare%22%3Atrue%7D&amp;ctp=LeastProtected&amp;rct=Normal&amp;wdorigin=Sharing.ServerTransfer&amp;csc=1&amp;instantedit=1&amp;wopicomplete=1&amp;wdredirectionreason=Unified_SingleFlush\"><span data-contrast=\"none\">UK Civil Aviation Authority<\/span><\/a><span data-contrast=\"none\"> until recently required pilots with HIV\u2014despite being otherwise physically well\u2014to undergo additional medical screening, partly due to concerns about HAND, which differed from the standard screening for pilots without HIV.<\/span><span data-contrast=\"auto\"> 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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n<h2><span data-contrast=\"auto\">Reflecting on our roles<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/h2>\n<p><span data-contrast=\"auto\">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.<\/span><span data-ccp-props=\"{}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>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 [&hellip;]<\/p>\n","protected":false},"author":1747,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[296217],"tags":[296246,294,11193,211],"class_list":["post-4946","post","type-post","status-publish","format-standard","hentry","category-department-of-infectious-disease","tag-clinical-research","tag-global-health","tag-hiv","tag-public-health"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>How medicine and medical research has contributed to HIV stigma\u2013and how we challenge it - 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