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 fueled 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.

  • Social HIV stigma

    Social stigma attached to HIV includes feelings of isolation from someone’s local community or social circle. ‘The Positive Perspectives Survey Report’ (an international survey of people living with HIV conducted by ViiV Healthcare) includes a variety of insightful HIV stigma statistics.17

    For example, over half of the people surveyed (53%) had experienced social stigma in the last year.17 A third (33%) indicated they had experienced physical stigma (e.g. instances of being shunned or abandoned by someone, harassment, or violence) in the last year. 17 As well as this, nearly half (46%) stated they had experienced verbal HIV stigma (e.g. gossip, taunting, scolding, labelling) in the last year.17

    The report highlights that a staggering 82% of HIV-positive respondents had experienced some form of stigma or discrimination within the past year, demonstrating the emotional challenges faced by people living with HIV.17

    Read about Tom's personal experience with social stigma

    For example, Tom, a person living with HIV, stated that: “After I was diagnosed, and I became undetectable, I started dating again… the HIV shouldn't have been an issue, but it always seemed to be a barrier in relationships.” Tom's account illustrates the HIV-related stigma still faced today within interpersonal relationships despite achieving an undetectable HIV status. This emphasises the urgent need for broader societal understanding and support.

  • Structural HIV stigma

    Structural stigma refers to any form of law or policy that results in the creation or reinforcement of HIV stigma.

    This form of HIV stigma can exist at a global, national, state or regional level and includes any law or policy – including legislative frameworks and governmental policy.18

    Read about an American’s personal perspective of structural HIV stigma

    In the Positive Perspectives research, a 50-plus-year-old woman from the USA discusses issues that still remain with legislative frameworks. For example, she says, "The stigma and criminal law around HIV has not changed much at all since the beginning. That’s 30 plus years, and stigma and criminal law [are] still the same, especially in rural areas.” This key account highlights that there is still a long way to go in reducing HIV stigma and discrimination.

  • HIV self-stigma

    Self-stigma includes feelings of self-blame, guilt, lack of worth, and need for secrecy.19 This form of HIV stigma is not limited to any single socio-economic group; it is seen across an array of populations where stigma and/or discrimination is present within any social class, gender or ethnicity. The Positive Perspectives survey found that 61% of individuals living with HIV stated they had experienced self-stigma in the last year and that half (50%) also said they believed HIV limits their lives.17

  • HIV and stigma in the workplace

    HIV stigma and discrimination remain a barrier to employment; employment rates for people living with HIV are consistently found to be below the national averages.20 The Positive Perspectives survey report found that 68% of those surveyed have not disclosed their HIV status to their colleagues, and many of these people will feel they are unable to do so due to organisational HIV stigma and discrimination.17 By spreading awareness about HIV and actively seeking to combat stigma in the workplace, employers can help to reduce discrimination.

  • HIV and stigma in the healthcare setting

    Research has shown that HCPs in some countries may seek to minimise contact with people living with HIV, delay or deny them treatment, demand additional payment for services and/or isolate them from other patients.21 Despite the benefits of openly talking to HCPs, nearly 30% of people living with HIV in the Positive Perspectives survey were not very comfortable raising concerns around their HIV management with their HCP.17

    Read about Kimberly’s personal experience of HIV stigma in a Detroit hospital

    Kimberly Smith, Head of Research & Development at ViiV Healthcare, discusses her first experience of HIV stigma when she supported the Detroit AIDS Project, aiming to educate healthcare providers on HIV. She says, “I encountered a particular hospital that removed people being treated for AIDS-related illnesses from the general patient population and separated them into an isolated wing hidden behind a red door.”

    This distinction reinforced societal stigma towards HIV-positive individuals, a practice not unique to that hospital, highlighting the broader issue of labelling and isolating people living with HIV.

    Read about a German woman’s personal experience of HIV stigma at the dentist

    Another quote depicting HIV stigma is from a young woman from Germany discussing a visit to the dentist: “A dentist put on three pairs of gloves when he found out [I had HIV].”

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

  • HIV stigma effects on mental health

    The Fast-Track Cities Quality of Life Survey evaluated key indicators relating to the quality of life of people living with HIV across 15 cities worldwide. It identified critical barriers to improving quality of life, with 38% of respondents indicating a diagnosis of anxiety and/or depression.22 Negative trends in this regard are particularly high in Europe and North America.22 Positive Action programmes aim to overcome the effects of HIV stigma on mental health in community-based settings.

  • HIV stigma effects on healthcare

    HIV stigma and discrimination have been recognised as barriers to treatment by UNAIDs.23 Stigma can be a barrier to HIV prevention and treatment for many reasons, including the fear of being stigmatised or discriminated against on an institutional and social level if one’s HIV status is revealed.24

    Stigma can also deter people from accessing prevention methods such as pre-exposure prophylaxis (PrEP) and harm reduction services like clean needle exchanges, especially in settings where these services are associated with judgement or disapproval. Therefore, HIV stigma can exacerbate existing inequalities and discourage targeted prevention and treatment efforts within populations that are already stigmatised, such as Black gay men.24

  • HIV stigma effects on relationships and intimacy

    In some communities, people living with HIV fear stigma and rejection from their families and loved ones.

    Individuals who experience rejection in their household or community may depart from their homes and/or alter their daily routines. HIV also continues to have a profound impact on intimate and sexual relationships.25 A greater awareness of “treatment as prevention”, such as the U=U campaign and the effective use of PrEP, can help reduce fear and stigma within relationships.

    Read about a Burundi woman’s personal experience of HIV stigma impacting her relationship

    A quote regarding HIV stigma from a Burundi woman who is open about her status but also anxious states: “I don’t know if I can get married when I am HIV positive! The way young men treat young women living with HIV makes them depressed and give up hope for the future.” Quotes such as these demonstrate how HIV stigma can impact people's relationships.

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

  • Assessing how we think about HIV

    By identifying and addressing negative thoughts and feelings about HIV within oneself or among loved ones, we can contribute to breaking down the stigma associated with the virus. Educational materials and support programmes developed for people living with HIV should include information on understanding and identifying self-stigma and provide tools to effectively address this.

    One of the best ways to reduce stigma is to be immersed in the lives of people living with HIV, hear their stories and learn the facts. You can also test your HIV knowledge, learn why words matter, and explore many more resources.

  • Assessing how we talk about HIV

    Language can be used to build stereotypes and stigma surrounding those living with HIV; a positive perspective and narrative surrounding HIV should be used in conversation and in the media to promote understanding of HIV and the people it affects.

    Here are some examples of language that may be stigmatising to people living with HIV and preferred wordings to use instead:31

    • ‘HIV infection’/’HIV-infected people’ - “Infection” carries the stigma of being contagious or a threat. Instead, you could say: HIV, people living with HIV, acquiring HIV.
    • ‘AIDS’ - “AIDS” should be used only when describing specifically AIDS (the end stage of HIV). HIV can be inclusive of both HIV and AIDS when the reference is not specific, as in “the HIV epidemic.” To learn more about the difference between HIV and AIDS, head to our HIV FAQs page.
    • ‘Died of AIDS’ - this assumes that AIDS is uniformly fatal, which is incorrect. Instead, you could say: “died from complications related to HIV” or “died of an AIDS-related illness.”

    To find out more about stigmatising language around HIV, visit the NIAID HIV Language Guide.

  • Improving HIV education

    The Positive Perspectives survey found that 64% of participants living with HIV believe that better education can help address/minimise stigma. Better education and funding from government, public and private sectors should be provided to communicate the facts about HIV and promote the use of inclusive language, whether in the workplace, faith settings, youth centres, refugee camps or other community-based settings.17 The public can also participate in online petitions to support the release of government funding.

  • Providing support in the workplace and healthcare setting

    Specific measures to prevent HIV-related discrimination and stigma should be embedded within broader anti-discrimination written policies, practices, and the culture in organisational settings, including in the workplace, education, and healthcare. Such measures should be monitored and implemented with zero tolerance for discrimination.

  • Zero discrimination in legal frameworks

    Existing discriminatory legislation must be repealed, and the enforcement of laws against physical or verbal abuse based on HIV status is critical. Establishing independent committees with representation from people living with HIV is vital. These committees should scrutinise governments, representative bodies, and healthcare systems to prevent prejudice or discrimination from influencing funding and policy decisions.

  • HIV stigma reduction interventions - how can you get involved?

    People can actively show their support to help end HIV stigma by:

    • Reaching out to local HIV service organisations for volunteering opportunities such as participating in fundraising events, assisting with onsite or mobile testing and providing language skills.
    • Engaging with the community and spreading educational material online and in person. Getting involved in HIV awareness days e.g. HIV Testing Day, Zero HIV Stigma Day or LGBTQ+ pride events, to support national observance.
    • Using pledge cards or other means to help raise money for HIV/human rights charities, posting on websites, blogs, social media channels and other digital outlets.

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.

  • Positive Action programmes

    The ViiV Positive Action programmes are a collection of strategic and community-based initiatives that address key behavioural and structural barriers that may increase the vulnerability of people living with HIV. These programmes seek to address the individual challenges affecting key populations and to, directly and indirectly, tackle HIV stigma and discrimination.

  • Tackle HIV campaign

    In June 2020, Welsh rugby star Gareth Thomas started the ‘Tackle HIV’ stigma campaign in partnership with ViiV Healthcare and the Terrence Higgins Trust (THT) after hearing first-hand how stigma and self-stigma deeply affect people living with HIV. ViiV is also an active participant in the THT back-to-work programme, supporting people living with HIV to reintegrate into the world of work.

  • HIV in view

    The expanded gallery of our HIV in view campaign features individuals living with HIV from various countries globally, sharing their rich and rewarding life experiences. ‘HIV in view’ was then followed by the ‘In Conversation’ series, featuring candid videos where individuals openly discuss their experiences of living with HIV.

    Watch the videos now

  • Being Seen

    ‘Being Seen’ is an award-winning weekly podcast by ViiV Healthcare, produced by Harley and Co and presented and narrated by writer and activist Darnell Moore. Each episode explores the role that culture plays in resolving how we see ourselves and how we are seen by others.

    Being Seen encourages the creation of more accurate cultural portrayals of the queer and gay Black male experiences in the US in order to reduce stigma and change perceptions around living with HIV.

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  29. 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
  30. 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
  31. 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.

NP-GBL-HVX-COCO-240011 | February 2024

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