Hiv And Aids: Stigma And Discrimination
Why there is stigma related to HIV and AIDS? Discover more about the prejudice against those living with HIV or AIDS.
From the moment scientists identified HIV and AIDS, social responses of fear, denial, stigma and discrimination have accompanied the epidemic. Discrimination has spread rapidly, fueling anxiety and prejudice against the groups most affected, as well as those living with HIV or AIDS. It goes without saying that HIV and AIDS are as much about social phenomena as they are about biological and medical concerns. Across the world the global epidemic of HIV/AIDS has shown itself capable of triggering responses of compassion, solidarity and support, bringing out the best in people, their families and communities. But AIDS is also associated with stigma, repression and discrimination, as individuals affected by HIV have been rejected by their families, their loved ones and their communities. This rejection holds as true in the rich countries of the north as it does in the poorer countries of the south.
Why there is stigma related to HIV and AIDS?
Factors which contribute to HIV/AIDS-related stigma:
- HIV/AIDS as punishment
- HIV/AIDS as a crime
- HIV/AIDS as war
- HIV/AIDS as horror
- HIV/AIDS as otherness
Forms of HIV/AIDS-related stigma and discrimination
Women and stigma
“My mother-in-law tells everybody, ‘Because of her, my son got this disease. My son is a simple as good as gold-but she brought him this disease.”
Families
Employment
Respond To The Needs Of Stigmatized Populations
In Brazil, formative research showed that truck drivers, a population often at increased risk of HIV infection, were wary of HIV services because of the stigma attached to accessing them., In response, Horizons and partners tested a model combining HIV-related services with other health services and targeted them to truckers. A health unit was established inside a border customs station in southern Brazil that provided a variety of services, including voluntary counseling and testing for HIV and sexually transmitted infections , syndromic management of STIs, and HIV/STI information, as well as basic health services not related to sexual health .
At baseline, less than half of the respondents had ever had an HIV test. By follow-up, the number of truckers who had ever had an HIV test increased by 49% in the intervention site, but only by 15% in the comparison site . The majority of participants reported that they found the services useful and nonstigmatizing.
The Roots Of Hiv Stigma
While the quality of life has improved enormously for people with HIV in the past 30 years, many of the same social and psychological barriers remain.
Ultimately, HIV is not like any other disease, at least not in the way that the public perceives it. What separates it from other illnesses like cancer or heart disease is that, like a communicable disease, those infected are often seen as vectors for transmission. Blame is frequently assigned, and not just to the infected individual but to an entire population, whether they be gay men, injecting drug users, or people of color.
Even before the AIDS epidemic began in the early 80s, many of these groups were already stigmatized, labeled by some as being either promiscuous or irresponsible. By the time the first wave of infections hit, the rapid spread of the disease through these communities only helped reinforce negative stereotypes. As a result, the people most at risk of HIV were often sent into hiding, either for fear of abandonment, discrimination, or abuse.
Discomfort with sexuality also plays a major role in the stigmatization of HIV. Even in otherwise progressive cultures, sexuality can often incite intense feelings of embarrassment or shame, particularly when related to homosexuality, sexually active women, or sex among youth.
All of these issues can’t help but contribute to feelings of stigmatization, both real and perceived, and may explain why 20% of the 1.2 million Americans living with HIV remain wholly untested.
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Despite Significant Medical Progress There Is Still A Stigma Surrounding Hiv In The Workplace That Needs To Be Addressed Says Drew Dalton
Fear of HIV and Aids, fuelled by media speculation, a growth of infections among the mainstream population, an outpouring of activism and a medical establishment struggling to get to grips with it, put pressure on the British government to act where it had not before.
This led to the then Conservative government launching the Dont Die of Ignorance campaign in 1987, complete with images of dropping tombstones, icebergs and a leaflet through every door in the nation. It announced that Aids was here, and anybody could be at risk of contracting it.
Sadly, this came seven years too late for many people and, because of this inaction, many died of the virus. Today, the lived reality of HIV has altered in how it is treated, yet there are more people living with HIV now than in the 1980s and 1990s.
Since 1996, when antiretroviral therapies were announced, those living with HIV have been offered fresh hope, and with this combination of drugs many people diagnosed with HIV no longer die of Aids, resulting in longer lives. It is expected that they should also have a better quality of life.
After my own research project, looking at the lives of people in the UK living with HIV, I found distressing employment experiences and very real, and active, discrimination going on within workplaces. As an outcome of this, I began working with the University of Sunderlands human resources department to develop an HIV policy for all staff at our institution.
The Consequences And Impact Of Stigma
As mentioned earlier, people living with HIV and AIDS frequently lose their jobs/livelihoods as well as opportunities for marriage and childbearing. And where no HIV programmes exist, they may also receive poorer care from the health sector.
In the ICRW report, a nurse in Ethiopia explained:
The wards dont have gloves, so how would you expect a nurse to go and attend to a HIV/AIDS patient? Thats why you can find a patient lying in a pool of diarrhoea for many hours. And a health worker in Vietnam admitted: We absolutely never inject infected persons. We just give them medicines…. We also treat small children here, so we give infected people no injections at all.
In most resource-constrained settings, people with HIV and AIDS frequently have to turn to their families for care. But even though most HIV-infected people receive loving treatment from their families, there are occasions when family members refuse to provide care, whether out of fear of transmission, out of anger, judgment and moral condemnation, fear of experiencing the stigma of others, or a combination of these factors, write Ogden and Nyblade.
Poverty compounds the impact of such stigma because it limits the amount of care a given family is able to provide, especially when someone is seen as a hopeless case .
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Resources Toolkits And Tools To Measure The Effectiveness Of Interventions
Understanding and challenging HIV stigma: toolkit for action
Growing out of ICRWs four-country study, this Toolkit provides evidence-based guidance for launching stigma-reduction activities with key groups, including religious and political leaders, people living with HIV and AIDS, and community members.
The toolkit contains more than 125 exercises and was developed through interactive, participatory workshops in all three African countries, with a total of 75 participants from 50 NGOs. The toolkit since has also been adapted for use in Vietnam. The first edition was developed in Africa and is available in English and Kiswahili. An adaptation of the first edition for the Asian context is available in both English and Vietnamese.
How Can I Stand Up To Hiv
You can play an important role in reducing stigma and discrimination by offering support and speaking out to correct myths and stereotypes about HIV that you hear from others.
Learn which words have negative meanings for people at risk for or living with HIV and which are empowering. Be intentional when you choose your words and mindful of how they can affect those around you. Use CDCs HIV Stigma Language Guide to learn how to talk about HIV in a way that is not stigmatizing.
Here are some other ideas for standing up to stigma:
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The National Network Of Key Population Associations In Mali Adopts A Strategic Plan
Mali’s National Network of Key Population Associations , which advocates for its members to seek health services, prioritized addressing the barrier of stigma and discrimination to increase health access to HIV prevention and treatment services. All 36 members from Bamako, Kayes, Koulikoro, Sikasso, Ségou and Mopti came together to discuss and approve the contents of the strategic plan and on March 2, 2019, with technical and financial support from HP+ Mali, finalized and adopted a strategic plan. The RENAPOC strategic plan is now accepted as the validated strategic plan of the various key population associations and will allow RENAPOC to operate with a stronger structure and strengthened autonomy. This strategic plan will serve as a reference tool, both for internal and external partners, for the next 5 years.
Why Is There Stigma Around Hiv And Aids
Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue between individuals and communities, family support, human solidarity, and the human perseverance to find new paths and solutions.
– Michel Sidibé, Executive Director of UNAIDS8
The fear surrounding the emerging HIV epidemic in the 1980s largely persists today. At that time, very little was known about how HIV is transmitted, which made people scared of those infected due to fear of contagion.
This fear, coupled with many other reasons, means that lots of people falsely believe:
- HIV and AIDS are always associated with death
- HIV is associated with behaviours that some people disapprove of
- HIV is only transmitted through sex, which is a taboo subject in some cultures
- HIV infection is the result of personal irresponsibility or moral fault that deserves to be punished
- inaccurate information about how HIV is transmitted, which creates irrational behaviour and misperceptions of personal risk.9
My daughter refused to go hospital to receive medicines. My daughter died because of the fear of stigmatization and discrimination
– Patience Eshun from Ghana, who lost her daughter to an AIDS-related illness10
Research by the International Centre for Research on Women outlines the possible consequences of HIV-related stigma as:
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How Do These Stigmas Affect People With Hiv
Stigmas can come in many different forms. People living with HIV can be subjected to stigmas that are not only experienced but also internalized or even anticipated. HIV stigmas and discrimination can also be self-imposed, individual, structural, or institutional.
HIV stigmas can negatively affect the physical health, healthcare behaviors, and interpersonal relationships of people living with HIV and can impact many aspects of life, such as:
- Employment. Increased healthcare needs for people living with HIV, such as needing to take time off for medical appointments, can jeopardize employment. In some cases, prejudice and discrimination may also exist in the workplace.
- Housing. Lack of employment due to discrimination can make it difficult to find adequate housing, as can discrimination from landlords. People living with HIV may also experience prejudice or discrimination from the people they live with or their neighbors.
- Healthcare. Feelings of shame from HIV stigma can prevent people living with HIV from seeking the lifesaving treatment they need. In addition, when healthcare professionals are not fully educated on the facts about HIV, it can create more stigma.
- Relationships. Social stigma against people living with HIV can lead to gossip, rejection, bullying, and in some cases, even violence. Harmful HIV myths can also make intimacy a difficult subject for people living with HIV.
- self-esteem
- Asia and the Pacific
- Latin America and the Caribbean
- Eastern Europe
- Central Asia
Hiv Can Be Transmitted Via Sneezing Toilet Seats Or Shaking Hands
False: HIV is transmitted through the exchange of certain types of bodily fluids including: blood, semen, breast milk, and vaginal fluids. Saliva, tears, sneezing, hugging, or touching shared objects like cutlery or toilet seats, cannot transmit HIV .
For more facts, check out our article about HIV transmission and prevention.
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The Root Causes Of Stigma
1) The role of knowledge about HIV and AIDS and fear surrounding it
Across all four countries, people were still afraid that HIV can be transmitted through ordinary, daily interactions with people living with HIV and AIDS. Even though the particulars varied in each setting, people are preoccupied with unlikely modes of transmission. Usually, the fear is that HIV could be transmitted by mosquitoes or through non-invasive contact with blood, sweat, diarrhea or other bodily fluids, but sometimes the what if scenarios were quite far-fetched. For example, in Ethiopia, there was a fear that raw chicken eggs could transmit the virus, if hens came upon and pecked at used condoms.
Fear of transmission leads directly to stigma such as the avoidance or isolation of persons living with HIV and AIDS. Sometimes even healthcare workers shared this fear of patients even though they know how HIV is transmitted, they lacked confidence about how HIV is not transmitted.
Ogden and Nyblade believe that the fear of transmission from casual transmission, and the various what if scenarios are the result of 1) the lack of specific, in-depth information about HIV transmission, 2) fear-based public messaging, and 3) the evolving nature of knowledge about HIV and AIDS.
2) The role of values, norms, and moral judgment
Approaches To Mitigate Or Combat Hiv And Aids Related Stigma
A number of strategies have been proposed to combat stigma. Some researchers have proposed tackling stigma directly with an educational approach targeted at the root causes of stigma. Bonds presentation illustrates the importance of addressing the social context in which stigma occurs.
The ICRW report authors agree that structural issues, such as poverty, which contribute to stigma and discrimination and that perpetuate social inequalities need to be addressed, but they also believe that it is possible to affect change by targeting individuals. We call for an approach to intervention that starts with the conviction that individual attitudes can and do make a difference, and that long-term and far-reaching stigma reduction can start with individuals, write Ogden and Nyblade.
Information and educational programmes addressing stigma in the individual have had only limited success in the past, so the ICRW report recommends a more in depth and interactive approach, moderated by a knowledgeable and trusted facilitator ensuring that people have a deep enough understanding of what HIV is and how it is transmitted so that they are equipped to make correct assessments of actual HIV risk in any given life situation they encounter.
Finally, they call for involving people with HIV and AIDS as integral members of all programmes.
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What Are The Stigmas Around Hiv
A stigma is a negative attitude or prejudice toward people with a distinguishing characteristic, such as a physical or mental health condition. Stigmas can be self-imposed, individual, or institutional and often lead to discrimination against people with that specific characteristic.
Stigmas against people living with HIV began in the 1980s, when the virus initially led to the HIV and AIDS epidemic in the United States. Misinformation about HIV led to common beliefs about people living with the condition many of which have no scientific basis, but were used to fuel stigma and discrimination.
In 2008, the People Living with HIV Stigma Index was created to collect evidence on the impact of stigmas and discrimination against people living with HIV. Over 100,000 people in 100 countries who are living with HIV have contributed data to the PLHIV Stigma Index.
Although weve come a long way in our knowledge about HIV and AIDS since the 1980s, misguided beliefs still contribute to the stigmas surrounding HIV. Below, we explain some of the most common misconceptions that fuel discrimination against the millions of people around the world living with HIV.
What Is Hiv Stigma
HIV stigma refers to irrational or negative attitudes, behaviors, and judgments towards people living with or at risk of HIV. It can negatively affect the health and well-being of people living with HIV by discouraging some individuals from learning their HIV status, accessing treatment, or staying in care. HIV stigma can also affect those at risk of HIV by discouraging them from seeking HIV prevention tools and testing, and from talking openly with their sex partners about safer sex options.
Populations disproportionately affected by HIV are also often affected by stigma due to, among other things, their gender, sexual orientation, gender identity, race/ethnicity, drug use, or sex work.
HIV stigma drives acts of discrimination in all sectors of society, including health care, education, the work place, the justice system, families, and communities.
Breaking down HIV stigma is a critical part of ending the HIV epidemic.
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Stigma And Health Inequalities
Stigma and health inequalities create significant barriers to accessing testing, prevention, and care . This has become more acute since COVID-19 and without action, we risk progress slipping further . Everyone involved in the health and social care sector has a responsibility to stop HIV stigma and address health inequalities throughout their work.
There is an urgent need to end stigma and discrimination against people living with HIV . This will not be a simple process and requires that the law and government policy properly protect against discrimination and does not perpetuate stigma . This must be done while changing public attitudes in order to end stigma .3 Submissions received emphasised that better knowledge about HIV can help to challenge associations of HIV with contagion and death but cannot alone eradicate HIV stigma . Stigma remains deeply bound up in other discriminations, with racism, xenophobia, transphobia, sexism and homophobia all playing key roles in continued stigma and misconceptions about people who live with HIV .