Despite huge progress in HIV treatment and prevention since the turn of the century, HIV stigma is still one of the most significant barriers to ending the HIV epidemic.
In this article, learn more about what HIV stigma is, witness real-world examples of stigma and discrimination, understand the impact it has on those living with HIV, and explore empowering strategies to combat these challenges. Together we can carve a path towards a world free from HIV misconceptions, empowering individuals with HIV to live their life to the fullest.
WHAT IS HIV-RELATED STIGMA?
HIV stigma can be defined as negative attitudes and beliefs directed toward individuals for simply having HIV.1 Examples of HIV stigma may include: believing that only certain groups of people can get HIV, passing moral judgments on people who are taking measures to prevent HIV, or feeling that people ‘deserve’ HIV because of their life choices.1
Discrimination is another part of this issue. Discrimination happens when people treat you unfairly because of these beliefs. Imagine a healthcare professional (HCP) not wanting to treat you, or someone not wanting to be around you just because you're living with HIV.1 That's HIV discrimination.
Stigma can be especially difficult for groups like men who have sex with men or the transgender community.2 In some countries, criminalisation and certain laws make it tougher for those living with HIV to access the care they need.3
Global examples of HIV stigma and discrimination
HIV stigma happens globally, but some countries and regions experience it more than others, primarily due to local laws, beliefs, and negative attitudes towards HIV. Here we cover examples of HIV stigma in countries within Africa, Asia, and Europe.
HIV stigma in Africa is well-documented. For example, in Uganda, discriminatory legal frameworks — such as the 'Anti-Homosexuality' bill enacted in 2023 — marginalise individuals, deter the disclosure of HIV status, and contribute to increased stigma.4 The 2023 bill criminalises same-sex acts with up to 10 years imprisonment, maintaining the death penalty for ‘aggravated homosexuality’ and criminalising the ‘promotion’ of homosexuality.4 Ultimately, this discourages many in Uganda from seeking testing or treatment.4
In South Africa, a survey on HIV stigma found that 75% of people living with HIV feel stigmatising attitudes are common.5 The same research found that 56% of respondents supported negative attitudes towards people living with HIV.5
In India, HIV stigma is also common; it was a key barrier in achieving UNAIDS’ global target of 90-90-90 in 2020 (90% of people living with HIV will know their status, 90% of those diagnosed will be on antiretroviral (ARV) medication, and 90% of those receiving ARVs will be virally suppressed).6 HIV stigma in India has meant that many people living with HIV have even reported fear of taking their HIV medication in front of family members.6 As a result, HIV stigma is hindering the United Nations’ (UN) 2030 goal to end the HIV epidemic by reducing new cases.
In Europe, an HIV Outcomes Report from 2019 (co-sponsored by ViiV Healthcare) highlighted HIV stigma and discrimination in countries like Germany and Romania.7 Germany struggles with stigma within its society and healthcare system, while in Romania, negative media campaigns from the late 1990s still continue to sway public opinion today.7
Globally, HIV-related legal actions against people living with HIV have occurred in at least 49 countries in the last 4 years, reflecting widespread HIV stigma in Europe, the United States, and beyond.8
HISTORY OF HIV STIGMA AND ITS CAUSES
The HIV/AIDS epidemic emerged in the early 1980s, and due to the lack of understanding about the virus, fear and misinformation led to widespread stigma and discrimination against those affected.9 HIV was initially associated with certain marginalised groups, such as men having sex with men, transgender people, and intravenous drug users, which further Fuelled prejudice and fear.2,9
Despite the development of highly active antiretroviral therapy (HAART) in the mid-1990s, the association of HIV/AIDS with people who injected drugs and the misconception of it being a ‘homosexual disease’ further contributed to the stigma surrounding the virus.10,11 Those with physically distinctive signs of HIV, including extreme weight loss and Kaposi’s sarcoma lesions, were also easily identified and readily discriminated against.11
However, as HIV stigma grew, so did the global efforts to combat it.
Combating HIV stigma: Examples
Key global efforts — like the 2001 UN Declaration of Commitment on HIV/AIDS and the 2023 World Health Organization (WHO) guidelines from the International AIDS Conference — showcase the ongoing global fight against HIV stigma.12,13
U=U, or undetectable equals untransmittable, ensures that individuals with undetectable levels of HIV have zero risk of transmitting the virus further.13 With an undetectable viral load and proper antiretroviral therapy (ART) adherence, there is no chance of transmitting HIV to sexual partners.13
Initiatives, programmes and campaigns such as ours at ViiV Healthcare and our collaborators’ continue to help reduce discrimination and increase awareness of HIV globally. For instance, the ‘HIV in view’ campaign (a special collaboration between ViiV Healthcare and Shutterstock Studios) battles HIV stigma by sharing the true picture and experiences of people living with HIV. Such campaigns are a far cry from the fear and uncertainty associated with HIV in the past.
TYPES OF HIV STIGMA – REAL-WORLD EXAMPLES
HIV stigma can happen in multiple settings and can come in different forms, such as social stigma (including interpersonal stigma and community stigma), organisational stigma, structural stigma, and self-stigma.14
Interpersonal stigma covers social circles that can influence individual behaviours (i.e. family, friends, peers, co-workers). Community stigma refers to relationships among organisations and institutions, including faith and community leaders.
Organisational HIV stigma may occur within institutions such as workplaces, health services, and religious or educational institutions. Structural stigma can be described as attitudes, practices, structures, services, and laws at higher levels that work against the interests of minority groups, such as individuals living with HIV.15
Lastly, ‘self-stigma’ involves internalised self-deprecating emotions and thoughts such as shame, self-blame, embarrassment, and low self-worth.16
Below, you can find more information on the various types of HIV stigma, along with insightful statistics and personal quotes of those affected.
WHAT ARE THE EFFECTS OF STIGMA AND DISCRIMINATION ON PEOPLE LIVING WITH HIV?
The effects of stigma can be profound and can have wide-ranging impacts on people living with HIV. Stigma may have a significant impact on mental health, relationships, intimacy, access to healthcare (such as HIV prevention and treatment), and career opportunities.17
RESEARCH ON HIV STIGMA AND DISCRIMINATION
Through research like the Positive Perspectives survey we are able to better understand the extent of stigma and discrimination in different settings and the knowledge gaps people have about HIV.
According to an online survey by The Harris Poll — covering 5,047 adults in Australia, Portugal, the UK and the USA — 76% of adults are unaware that effective HIV treatment renders the virus undetectable in the blood, preventing transmission to sexual partners.
Forty years on from the start of the HIV epidemic, these findings display the persistence of outdated and inaccurate views about HIV and U=U, hindering widespread awareness of the advances in HIV prevention and treatment.
An overwhelming majority (88%) of respondents believe there are still negative perceptions towards people living with HIV, even though the virus can now be effectively managed with ARV medication. Almost a third (30%) of people surveyed incorrectly believed HIV can be transmitted through kissing. Surveys like these reinforce the importance of anti-HIV stigma campaigns and education in ending HIV stigma globally.
A standardised tool, the People Living with HIV (PLHIV) Stigma Index, assesses how stigma and discrimination affect individuals with HIV globally.26 Conducted in over 100 countries, with around 100,000 participants, this research allows people to see what HIV stigma looks like in different parts of the world.26
Another example of a research tool is the Berger HIV Stigma Scale (Berger-HSS), a widely used 40-item measure designed to assess perceived stigma in individuals living with HIV.27 The Berger-HSS encompasses factors such as personalised stigma, disclosure concerns, concerns with public attitudes, and negative self-image.27
WAYS TO REDUCE HIV STIGMA
In order to end the HIV stigma, we must enact change on various levels, such as:
- On an individual level, by providing accurate information to individuals about HIV transmission, prevention, and treatment, whilst encouraging people to challenge and dispel misconceptions about HIV.28
- On an intrapersonal level, by challenging personal biases and beliefs about HIV, addressing mental health aspects, reducing self-stigma among individuals living with HIV.29
- On a community level, by conducting community-based awareness programmes to educate and reduce HIV stigma, establishing support systems to create a sense of belonging for individuals affected by HIV.28
- On an institutional level, by implementing non-discriminatory policies in healthcare, education, and employment, providing training for professionals to handle HIV-related issues without perpetuating stigma.28
- On a structural level, by advocating for legal changes to protect individuals from discrimination based on HIV status, addressing societal attitudes and norms that contribute to stigma.30
OUR WORK TOWARDS COMBATING HIV STIGMA
ViiV Healthcare is committed to providing continued education and driving HIV awareness to tackle the causes of stigma. Eliminating the fear and misinformation that lead to stigma is key if we are to support people’s emotional well-being and help make HIV a smaller part of people’s lives. The examples below are just a few instances of how ViiV is fighting to stop HIV stigma.
References:
- CDC. HIV Stigma. Centers for Disease Control and Prevention. https://www.cdc.gov/stophivtogether/hiv-stigma/index.html. Published November 3, 2022. Accessed January 4, 2024.
- de Villiers L, Thomas A, Jivan D, et al. Stigma and HIV service access among transfeminine and gender diverse women in South Africa - a narrative analysis of longitudinal qualitative data from the HPTN 071 (PopART) trial. BMC Public Health. 2020;20(1):1898. doi:10.1186/s12889-020-09942-5
- Semugoma P, Beyrer C, Baral S. Assessing the effects of anti-homosexuality legislation in Uganda on HIV prevention, treatment, and care services. SAHARA J. 2012;9(3):173-176. doi:10.1080/17290376.2012.744177
- Uganda: President’s failure to veto anti-LGBTI Bill an “abhorrent” violation of LGBTI rights. https://www.amnesty.org/en/latest/news/2023/05/president-must-veto-anti-lgbti-law/ Accessed January 4, 2024.
- Mokgatle M, Madiba S. Community Perceptions of HIV Stigma, Discriminatory Attitudes, and Disclosure Concerns: A Health Facility-Based Study in Selected Health Districts of South Africa. Int J Environ Res Public Health. 2023;20(14). doi:10.3390/ijerph20146389
- Ekstrand ML, Bharat S, Srinivasan K. HIV stigma is a barrier to achieving 90-90-90 in India. Lancet HIV. 2018;5(10):e543-e545. doi:10.1016/S2352-3018(18)30246-7
- Good Practices in the Long-Term Care of People Living with HIV: Learning from Country Experiences Germany and Romania. hivoutcomes.eu. https://hivoutcomes.eu/wp-content/uploads/2019/11/191128HIV-Outcomes-country-reports-GER-and-ROM_input-from-RO.pdf . Published 2019. Accessed January 11, 2024.
- HIV criminalisation cases recorded in 72 countries, including 49 in the last four years. AIDSMAP. https://www.aidsmap.com/news/jun-2019/hiv-criminalisation-cases-recorded-72-countries-including-49-last-four-years#. Published June 3, 2019. Accessed January 4, 2024.
- Why the HIV epidemic is not over. World Health Organisation. https://www.who.int/news-room/spotlight/why-the-hiv-epidemic-is-not-over. Accessed January 5, 2024.
- Lange JMA, Ananworanich J. The discovery and development of antiretroviral agents. Antivir Ther. 2014;19 Suppl 3:5-14. doi:10.3851/IMP2896
- Hedge B, Devan K, Catalan J, Cheshire A, Ridge D. HIV-related stigma in the UK then and now: to what extent are we on track to eliminate stigma? A qualitative investigation. BMC Public Health. 2021;21(1):1022. doi:10.1186/s12889-021-11000-7
- Summary of the Declaration of Commitment on HIV/AIDS Keeping the Promise Keeping the Promise.; 2001. https://www.unaids.org/sites/default/files/sub_landing/files/jc668-keepingpromise_en.pdf .
- The role of HIV viral suppression in improving individual health and reducing transmission. WHO. https://www.who.int/publications/i/item/9789240055179. Published July 22, 2023.
- Subu MA, Wati DF, Netrida N, et al. Types of stigma experienced by patients with mental illness and mental health nurses in Indonesia: a qualitative content analysis. Int J Ment Health Syst. 2021;15(1):77. doi:10.1186/s13033-021-00502-x
- Turan B, Hatcher AM, Weiser SD, Johnson MO, Rice WS, Turan JM. Framing Mechanisms Linking HIV-Related Stigma, Adherence to Treatment, and Health Outcomes. Am J Public Health. 2017;107(6):863-869. doi:10.2105/AJPH.2017.303744
- Turan B, Budhwani H, Fazeli PL, et al. How Does Stigma Affect People Living with HIV? The Mediating Roles of Internalized and Anticipated HIV Stigma in the Effects of Perceived Community Stigma on Health and Psychosocial Outcomes. AIDS Behav. 2017;21(1):283-291. doi:10.1007/s10461-016-1451-5
- The Positive Perspectives Survey Report A view into the lives of people living with HIV. https://edgesuite.gskstatic.com/Viiv/viivhealthcare/pdf_files/master/main/positive-perspectives-survey-report-finalcompressed.pdf. Published 2017. Accessed January 4, 2024.
- Oldenburg CE, Perez-Brumer AG, Hatzenbuehler ML, et al. State-level structural sexual stigma and HIV prevention in a national online sample of HIV-uninfected MSM in the United States. AIDS. 2015;29(7):837-845. doi:10.1097/QAD.0000000000000622
- Ferris France N, Byrne E, Nyamwanza O, et al. Wakakosha “You are Worth it”: reported impact of a community-based, peer-led HIV self-stigma intervention to improve self-worth and wellbeing among young people living with HIV in Zimbabwe. Front Public Health. 2023;11:1235150. doi:10.3389/fpubh.2023.1235150
- Rodger AJ, Brecker N, Bhagani S, et al. Attitudes and barriers to employment in HIV-positive patients. Occup Med . 2010;60(6):423-429. doi:10.1093/occmed/kqq077
- Nyblade L, Stangl A, Weiss E, Ashburn K. Combating HIV stigma in health care settings: what works? J Int AIDS Soc. 2009;12:15. doi:10.1186/1758-2652-12-15
- Diallo M Duncombe C Zuniga. An Exploratory Survey into the Quality of Life of PLHIV in 15 FTCs. International Association of Providers of AIDS Care. https://www.iapac.org/files/2019/09/FTCQOLSURVEYFINAL.pdf . Published September 2019. Accessed January 5, 2024.
- UNAIDS warns that HIV-related stigma and discrimination is preventing people from accessing HIV services. https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2017/october/20171002_confronting-discrimination. Accessed January 5, 2024.
- Babel RA, Wang P, Alessi EJ, Raymond HF, Wei C. Stigma, HIV Risk, and Access to HIV Prevention and Treatment Services Among Men Who have Sex with Men (MSM) in the United States: A Scoping Review. AIDS Behav. 2021;25(11):3574-3604. doi:10.1007/s10461-021-03262-4
- James T, Nkwonta C, Kaur A, Hart M, Brown M. A Qualitative Study of the Impact of HIV on Intimacy and Sexuality Among Older Childhood Sexual Abuse Survivors Living with HIV. Arch Sex Behav. 2022;51(5):2465-2472. doi:10.1007/s10508-021-02277-1
- Country Reports. People Living with HIV Stigma Index. https://www.stigmaindex.org/country-reports/. Published November 25, 2021. Accessed January 11, 2024.
- Saine ME, Moore TM, Szymczak JE, et al. Validation of a modified Berger HIV stigma scale for use among patients with hepatitis C virus (HCV) infection. PLoS One. 2020;15(2):e0228471. doi:10.1371/journal.pone.0228471
- Pulerwitz J, Michaelis A, Weiss E, Brown L, Mahendra V. Reducing HIV-related stigma: lessons learned from Horizons research and programs. Public Health Rep. 2010;125(2):272-281. doi:10.1177/003335491012500218
- Cook JE, Purdie-Vaughns V, Meyer IH, Busch JTA. Intervening within and across levels: a multilevel approach to stigma and public health. Soc Sci Med. 2014;103:101-109. doi:10.1016/j.socscimed.2013.09.023
- Mahajan AP, Sayles JN, Patel VA, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS. 2008;22 Suppl 2(Suppl 2):S67-S79. doi:10.1097/01.aids.0000327438.13291.62
- HIV Language Guide. NIAID.NIH. https://www.hptn.org/sites/default/files/inline-files/NIAID%20HIV%20Language%20Guide%20-%20March%202020.pdf. Published February 2020. Accessed December 2, 2023.