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HIV & AIDS Stigma and Discrimination

What is stigma and discrimination?

A mural in Ghana challenging HIV related stigmaAIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV and AIDS. The consequences of stigma and discrimination are wide-ranging: being shunned by family, peers and the wider community, poor treatment in healthcare and education settings, an erosion of rights, psychological damage, and a negative effect on the success of HIV testing and treatment.

Introduction

AIDS stigma and discrimination exist worldwide, although they manifest themselves differently across countries, communities, religious groups and individuals. They occur alongside other forms of stigma and discrimination, such as racism, stigma based on physical appearance, homophobia or misogyny and can be directed towards those involved in what are considered socially unacceptable activities such as prostitution or drug use.

Stigma not only makes it more difficult for people trying to come to terms with HIV and manage their illness on a personal level, but it also interferes with attempts to fight the HIV and AIDS epidemic as a whole. On a national level, the stigma associated with HIV can deter governments from taking fast, effective action against the epidemic, whilst on a personal level it can make individuals reluctant to access HIV testing, treatment and care.

UN Secretary-General Ban Ki Moon says:

"Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world." 1

Why is there stigma related to HIV and AIDS?

Fear of contagion coupled with negative, value-based assumptions about people who are infected leads to high levels of stigma surrounding HIV and AIDS. 2

Factors that contribute to HIV/AIDS-related stigma include:

  • HIV/AIDS is a life-threatening disease, and therefore people react to it in strong ways.
  • HIV infection is associated with behaviours (such as homosexuality, drug addiction, prostitution or promiscuity) that are already stigmatised in many societies.
  • Most people become infected with HIV through sex, which often carries moral baggage.
  • There is a lot of inaccurate information about how HIV is transmitted, creating irrational behaviour and misperceptions of personal risk.
  • HIV infection is often thought to be the result of personal irresponsibility.
  • Religious or moral beliefs lead some people to believe that being infected with HIV is the result of moral fault (such as promiscuity or 'deviant sex') that deserves to be punished.
  • The effects of antiretroviral therapy on people’s physical appearance can result in forced disclosure and discrimination based on appearance.

The fact that HIV/AIDS is a relatively new disease also contributes to the stigma attached to it. The fear surrounding the emerging epidemic in the 1980s is still fresh in many people’s minds. At that time very little was known about the risk of HIV transmission, which made people scared of those infected due to fear of contagion.

From early in the AIDS epidemic a series of powerful images were used that reinforced and legitimised stigmatisation.

  • HIV/AIDS as punishment (e.g. for immoral behaviour)
  • HIV/AIDS as a crime (e.g. in relation to innocent and guilty victims)
  • HIV/AIDS as war (e.g. in relation to a virus which must be fought)
  • HIV/AIDS as horror (e.g. in which infected people are demonised and feared)
  • HIV/AIDS as otherness (in which the disease is an affliction of those set apart)

View examples of alarming 1980s public health advertisements from the UK and Australia associating AIDS with death.

Different contexts of HIV-related stigma

HIV/AIDS-related stigma is not a straightforward phenomenon as attitudes towards the epidemic and those affected vary massively. Even within one country reactions to HIV/AIDS will vary between individuals and groups of people. Religion, gender, sexuality, age and levels of AIDS education can all affect how somebody feels about HIV and AIDS.

AIDS-related stigma is not static. It changes over time as infection levels, knowledge of the disease and treatment availability vary.

In 2003, when launching a major campaign to scale-up treatment in the developing world the World Health Organization (WHO) claimed that:

“As HIV/AIDS becomes a disease that can be both prevented and treated, attitudes will change, and denial, stigma and discrimination will rapidly be reduced.” 3

It is difficult to assess the accuracy of this statement as levels of stigma are hard to measure and a number of small-scale studies have shown that the relationship between increased access to HIV treatment and a reduction in stigma is not always clear. 4 5 A study of 1,268 adults in Botswana found that stigmatising attitudes had lessened three years after the national programme providing universal access to treatment was introduced. However, the study concluded that although improving access to antiretroviral treatment may be a factor in reducing stigma, it does not eliminate stigma altogether and does not lessen the fear of stigma amongst HIV positive people. 6

Moreover, as there are many types of stigma it is possible that the availability of treatment may reduce some types of stigma and not others. For example, a study in Tanzania found that, on the one hand, stigma caused by the perception of people living with HIV as weak and therefore a 'burden' on the community had decreased with the uptake of treatment. 7 The tendency of people living with HIV to 'self stigmatise' had also decreased, as contact with not only health professionals but also with other people living with HIV helped them see that they were not alone. On the other hand, 'fear based stigma' was found to have increased. Those studied were concerned that because it was now difficult to differentiate between people infected with HIV, and those who are not, HIV transmission would increase as they would no longer know to "avoid those who 'look ill". 8

The fact that stigma remains in developed countries such as America, where treatment has been widely available for over a decade, also indicates that the relationship between HIV treatment and stigma is not straightforward. An estimated 27 percent of Americans would prefer not to work closely with a woman living with HIV. 9 Moreover, preliminary results from the People Living with HIV Stigma Index found that 17 percent of respondents living with HIV in the UK had been denied health care and that verbal harassment or assault had been experienced by 21 percent of respondents. 10 11

Stigma may also vary depending on the dominant transmission routes in the country or region. In sub-Saharan Africa, for example, heterosexual sex is the main route of infection, which means that AIDS-related stigma in this region is mainly focused on promiscuity and sex work.

"Because it is about sex, in my country they then automatically think you got it because you have been loose…you are not anything better than a prostitute… they don’t believe you didn’t get it any other way.” - African woman in the UK 12

This woman’s experience reveals the multi-layered nature of stigma. Within her quote she reveals being stigmatised but perhaps unknowingly accepting of the stigma against infected sex workers.

In Western countries where injecting drug use and sex between men have been the most common sources of infection, it is these behaviours that are highly stigmatised.

Women with HIV or AIDS may be treated very differently from men in some societies where they are economically, culturally and socially disadvantaged. They are sometimes mistakenly perceived to be the main transmitters of sexually transmitted diseases (STDs). Men are more likely than women to be 'excused' for the behaviour that resulted in their infection.

"Even a married woman who has been infected by her husband will be accused by her in-laws… In such a male-dominated society no-one ever accepts that the man is actually the one who did something wrong… It is even harder on women since it is seen as a fair result of their sexual misbehaviour." - HIV-positive woman, Lebanon 13

The effects of stigma

"The epidemic of fear, stigmatization and discrimination has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those affected. This hinders, in no small way, efforts at stemming the epidemic. It complicates decisions about testing, disclosure of status, and ability to negotiate prevention behaviours, including use of family planning services." 14

AIDS-related stigma has had a profound effect on the epidemic’s course. The WHO cites fear of stigma and discrimination as the main reason why people are reluctant to be tested, to disclose their HIV status or to take antiretroviral drugs. 15 One study found that participants who reported high levels of stigma were more than four times more likely to report poor access to care. 16 These factors all contribute to the expansion of the epidemic (as a reluctance to determine HIV status or to discuss or practice safe sex means that people are more likely to infect others) and a higher number of AIDS-related deaths. An unwillingness to take an HIV test means that more people are diagnosed late, when the virus has already progressed to AIDS, making treatment less effective and causing early death.

AIDS activists campaining against HIV-related discrimination, IndiaResearch by the International Centre for Research on Women (ICRW) 17 found the possible consequences of HIV-related stigma to be:

  • Loss of income/livelihood
  • Loss of marriage & childbearing options
  • Poor care within the health sector
  • Withdrawal of caregiving in the home
  • Loss of hope & feelings of worthlessness
  • Loss of reputation

Some of these consequences refer to ‘internal stigma’ or ‘self-stigma’. Internal stigma refers to how people living with HIV regard themselves, as well as how they see public perception of people living with HIV. Stigmatising beliefs and actions may be imposed by people living with HIV themselves:

"I am afraid of giving my disease to my family members-especially my youngest brother who is so small. It would be so pitiful if he got the disease. I am aware that I have the disease so I do not touch him—I talk with him only. I don’t hold him in my arms now." Woman in Vietnam 18

Self-stigma and fear of a negative community reaction can hinder efforts to address the AIDS epidemic by perpetuating the wall of silence and shame surrounding the epidemic.

Stigma also worsens problems faced by children orphaned by AIDS. AIDS orphans may encounter hostility from their extended families and community, and may be rejected, denied access to schooling and health care, and left to fend for themselves.

Types of HIV/AIDS-related stigma and discrimination

AIDS-related stigma can lead to discrimination such as negative treatment and denied opportunities on the basis of their HIV status. This discrimination can affect all aspects of a person's daily life, for example, when they wish to travel, use healthcare facilities or seek employment.

Government

A country’s laws, rules and policies regarding HIV can have a significant effect on the lives of people living with the virus. Discriminatory practices can alienate and exclude people living with HIV, reinforcing the stigma surrounding HIV and AIDS.

In 2012, UNAIDS reported that 61 percent of countries now have some form of legislation in place to protect people living with HIV from discrimination. 19 However, in 2013, 78 countries worldwide listed homosexuality as a crime 20, with Uganda since heightening their punishment for homosexuality. 21 Criminalisation of vulnerable groups also remains widespread with 60 percent of countries reporting laws, regulations or policies which present obstacles to providing effective HIV prevention, treatment, care and support. 22 Ban Ki-moon, Secretary-General of the United Nations, believes that "almost all permit at least some form of discrimination". 23

There are many ways that governments can actively discriminate against people or communities with (or suspected of having) HIV/AIDS. Many of these laws have been justified on the grounds that HIV/AIDS poses a public health risk. Below are some examples of government level stigma and discrimination against people living with HIV/AIDS:

  • The Ugandan Armed Forces reject recruitment of persons who test positive for HIV on the basis that their bodies will be too weak; however they will not dismiss current employees who test positive. 24
  • The Chinese government enforces a compulsory HIV test for anyone applying for a study/work visa longer than 6 months, with many being turned away if their result is positive. 25
  • The UK legal system can prosecute individuals who pass the virus to somebody else, even if they did so without intent.

Healthcare

In healthcare settings people with HIV can experience stigma and discrimination such as being refused medicines or access to facilities, receiving HIV testing without consent, and a lack of confidentiality. Such responses are often fuelled by ignorance of HIV transmission routes amongst doctors, midwives, nurses and hospital staff. 26

Lack of confidentiality has been repeatedly mentioned as a particular problem in health care settings. Many people living with HIV/AIDS do not get to choose how, when and to whom to disclose their HIV status. Studies by the WHO in India, Indonesia, the Philippines and Thailand found that 34 percent of respondents reported breaches of confidentiality by health workers. 27

Doctors in healthcare settings in resource-poor areas with limited or no drugs have reported a frustration with the lack of options for treating people with HIV/AIDS, who were seen as 'doomed' to die. 28 This frustration may mean that AIDS patients are not prioritised or are actively discriminated against. Fear of exposure to HIV as a result of lack of protective equipment is another factor fuelling discrimination among doctors and nurses in under-resourced clinics and hospitals.

Stigma and discrimination in healthcare settings are not confined to developing countries. Below an HIV positive woman in London, UK tells of her experience with an NHS dentist:

“I have a dental problem and I go to this clinic, and I go there, two maybe three times. So eventually I told them about my condition. They explained that I would have to be the last appointment of the day. I have been to that room, and sat on that chair, and the same doctor examined me as before, but after I told them I was HIV positive. So I went for the last appointment of the day last week, they covered the chair, the light, the doctors were wearing three pairs of gloves…” 29

A review of research into tackling stigma in health care settings advocated a multi-pronged approach, requiring action on the individual, environmental and policy levels. For example, health care workers need to be made aware of the negative effect that stigma can have on the quality of care patients receive, they should have accurate information about the risk of HIV infection (the misperception of which can lead to stigmatising actions), and they should also be encouraged to not associate HIV with immoral behaviour. Facilities should have sufficient equipment and information so health workers can carry out universal precautions and prevent exposure to HIV. 30

Policies within health care settings can also be effective in reducing stigma. Such programmes would involve participatory methods like role play and group discussion, as well as training on stigma and universal precautions. The involvement of people living with HIV could lead to a greater understanding of patients’ needs and the negative effect of stigma. 31

Employment

In the workplace, people living with HIV may suffer stigma from their co-workers and employers, such as social isolation and ridicule, or experience discriminatory practices, such as termination or refusal of employment. 32 Fear of an employer’s reaction can cause a person living with HIV anxiety:

"It is always in the back of your mind, if I get a job, should I tell my employer about my HIV status? There is a fear of how they will react to it. It may cost you your job, it may make you so uncomfortable it changes relationships. Yet you would want to be able to explain about why you are absent, and going to the doctors.” - HIV positive woman UK 33

“Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I'll certainly not buy a problem for the company. I see recruitment as a buying-selling relationship. If I don't find the product attractive, I'll not buy it.” - A Head of Human Resource Development, India 34

In December 2010, the International Labour Organisation (ILO) and China’s Centre for Disease Control and Prevention (CDC) issued a joint report entitled “HIV and AIDS Related Employment Discrimination in China”. It noted that the national policy for recruiting civil servants specifies that:

“those who suffer gonorrhoea, syphilis, chanchroid, venereal lympho-granuloma, HPV, genital herpes or HIV will be disqualified”. 35

Rulian Wu from the ILO commentated: “If the government discriminates against people with HIV, then other sectors will follow, for example, if you apply to be a teacher in the local area”. 36 Whilst Chinese teachers are not civil servants, recruitment policies are usually based upon those of the Chinese civil service. In addition, the report notes that national sanitation guidelines prevent people living with HIV and AIDS from working in 'public places' and documents instances of mandatory HIV testing. All of these activities are in breach of the ILO Code of Practice on HIV/AIDS, to which China is a signatory. 37

Restrictions on travel and stay

Many countries have laws that restrict the entry, stay and residence of people living with HIV.
 
As of October 2013, people living with HIV were subject to some sort of restriction on their travel and/or stay in 41 countries, territories and areas. 38 39 40

Restrictions can include the need to disclose HIV status or to be subject to a mandatory HIV test, the need for discretionary approval to stay, and the deportation of individuals once their HIV-positive status is discovered. 41

Until the 4th of January 2010 the United States restricted all HIV positive people from entering the country, whether they were on holiday or visiting on a longer-term basis. 42 Tajikistan is the most recent country to remove restrictions on entry, stay and residence for people living with HIV, with these reforms signed by President Emomalii Rahmon on 14 March 2014. 43

Some countries have policies that could violate confidentiality of status if, for example, a stamp is required on a waiver or passport in order to gain entry or stay. Students living with HIV are barred from applying to study in certain countries including Malaysia and Syria.
 
Deportation of people living with HIV has potentially life-threatening consequences if they have been taking HIV treatment. If they are deported to a country that has limited treatment provision, this could lead to drug resistance and death. Alternatively, people living with HIV may face deportation to a country where they would be subject to even further discrimination - a practice that could contravene international law. 44
 

Community

Community level stigma and discrimination towards people living with HIV is found all over the world. A community’s reaction to somebody living with HIV can have a huge effect on that person’s life. If the reaction is hostile a person may be discriminated against and may be forced to leave their home, or change their daily activities such as shopping, socialising or schooling.

"At first relations with the local school were wonderful and Michael thrived there. Only the head teacher and Michael's personal class assistant knew of his illness… Then someone broke the confidentiality and told a parent that Michael had AIDS. That parent, of course, told all the others. This caused such panic and hostility that we were forced to move out of the area. Michael was no longer welcome at the school. Other children were not allowed to play with him - instead they jeered and taunted him cruelly. One day a local mother started screaming at us to keep him away from her children and shouting that he should have been put down at birth…. Ignorance about HIV means that people are frightened. And frightened people do not behave rationally. We could well be driven out of our home yet again.” - British woman describing the experience of her foster son in a British school 45

Community-level stigma and discrimination can manifest as ostracism, rejection and verbal and physical abuse. It has even extended to murder. AIDS related murders have been reported in countries as diverse as Brazil, Colombia, Ethiopia, India, South Africa and Thailand. In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbours in her township near Durban, South Africa, after speaking openly on World AIDS Day about her HIV status. 46 It is therefore not surprising that 79 percent of people living with HIV who participated in a global study, feared social discrimination following their status disclosure. 47

Stigma and discrimination can also take particular forms within key populations at higher risk. For example, studies have shown that within some gay communities there is segregation between HIV-positive and HIV-negative men, where men associate predominately with those of the same status. Some people living with HIV have linked this “rift” within the community with depression, anxiety and loneliness. Other members of gay communities have reported stigma based on physical changes due to the side effects of treatment, which can lead people to delay seeking and initiating treatment. 48

Family

In the majority of developing countries families are the primary caregivers when somebody falls ill. There is clear evidence that families play an important role in providing support and care for people living with HIV and AIDS. However, not all family responses are supportive. HIV positive members of the family can find themselves stigmatised and discriminated against within the home. There is concern that women and non-heterosexual family members are more likely than children and men to be mistreated.

“When I was in hospital, my father came once. Then he shouted that I had AIDS. Everyone could hear. He said: this is AIDS, she’s a victim. With my brother and his wife I wasn’t allowed to eat from the same plates, I got a plastic cup and plates and I had to sleep in the kitchen. I was not even allowed to play with the kids.” - HIV-positive woman, Zimbabwe 49

A Dutch survey of people living with HIV found that stigma in family settings - in particular avoidance, exaggerated kindness and being told to conceal one's status - was a significant predictor of psychological distress. This was believed to be due to the absence of unconditional love and support, which families are expected to provide. 50 Furthermore, people living with HIV are often worried about losing family and friends if they disclose their status. As a global study illustrated, 35 percent of those interviewed cited this as a concern surrounding disclosure. 51

The way forward

HIV-related stigma and discrimination severely hamper efforts to effectively fight the HIV and AIDS epidemic. Fear of discrimination often prevents people from seeking treatment for AIDS or from admitting their HIV status publicly. People with (or suspected of having) HIV may be turned away from healthcare services and employment, or refused entry to a foreign country. In some cases, they may be forced from home by their families and rejected by their friends and colleagues. The stigma attached to HIV/AIDS can extend to the next generation, placing an emotional burden on those left behind.

Denial goes hand in hand with discrimination, with many people continuing to deny that HIV exists in their communities. Today, HIV/AIDS threatens the welfare and wellbeing of people throughout the world. At the end of the 2011, 34 million people were living with HIV and 1.7 million had died from an AIDS-related illness that year. 52 Combating stigma and discrimination against people who are affected by HIV/AIDS is vital to preventing and controlling the global epidemic.

So how can progress be made in overcoming this stigma and discrimination? How can we change people's attitudes to AIDS?

Institutional and other monitoring mechanisms can enforce the rights of people living with HIV (PLHIV) facilitating ways of mitigating the effects of stigma and discrimination. Some advocate the use of specific education programmes that emphasise the rights of people living with HIV. As well as being made aware of their rights, PLHIV can be empowered in order to take action if these rights are violated. One study puts forward the idea of PLHIV 'Champions' at ARV and sexual health clinics. 53

"We can fight stigma. Enlightened laws and policies are key. But it begins with openness, the courage to speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The media should condemn prejudice and use its influence to advance social change, from securing legal protections to ensuring access to health care." - Ban Ki-moon, Secretary-General of the United Nations 54

However, no policy or law can alone combat HIV/AIDS related discrimination. Stigma and discrimination will continue to exist so long as societies as a whole have a poor understanding of HIV and AIDS and the pain and suffering caused by negative attitudes and discriminatory practices. The fear and prejudice that lie at the core of the HIV/AIDS-related discrimination need to be tackled at the community and national levels, with AIDS education playing a crucial role. A more enabling environment needs to be created to increase the visibility of people with HIV/AIDS as a 'normal' part of any society.

The presence of treatment can make this task easier; where there is the opportunity to live a fulfilling and long life with HIV, people are less afraid of AIDS; they are more willing to be tested for HIV, to disclose their status, and to seek care if necessary. The task is to confront the fear-based messages and biased social attitudes, in order to reduce the discrimination and stigma of people living with HIV and AIDS.

Where next?

References

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