HIV & AIDS stigma and discrimination

AIDS-related stigma refers to the prejudice and discrimination directed at people living with HIV/AIDS (PLWHA), and the groups and communities that they are associated with. It can result in people living with HIV and AIDS being rejected from their community, shunned, discriminated against or even physically hurt.

AIDS stigma and discrimination have been seen all over the world, although they manifests themselves differently between countries, communities, religious groups and individuals. They are often seen alongside other forms of stigma and discrimination, such as racism, homophobia or misogyny and can be associated with behaviours often considered socially unacceptable such as prostitution or drug use.

Stigma directed at PLWHA not only makes it more difficult for people trying to come to terms with and manage their illness on a personal level, but it also interferes with attempts to fight the 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/AIDS².

Factors that contribute to HIV/AIDS-related stigma:

• HIV/AIDS is a life-threatening disease.
• 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. Sexually transmitted diseases are always highly stigmatised.
• There is a lot of inaccurate information about how HIV is transmitted.
• 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 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 1980’s is still fresh in many people’s minds. At that time very little was known about the transmissibility of the virus, 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)

Different places, different people, different problems

It is difficult to talk about HIV/AIDS-related stigma as a singular phenomenon, as attitudes towards the epidemic and those affected vary massively. Even within one country reactions to HIV/AIDS will vary between different groups of people and individuals. Religion, gender, sexuality, age and levels of AIDS education can all affect how somebody feels about the disease.

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 Organisation (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 difficult to measure. A number of small-scale studies have however been conducted, with fairly positive results. A study of 1,268 adults in Botswana found that stigmatising attitudes had lessened three years after the national programme providing universal access to antiretroviral treatment was introduced. The study concluded that although antiretroviral therapy access may be a factor in reducing stigma, it does not eliminate stigma altogether and does not lessen the fear of stigma amongst HIV positive people⁴.

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 HIV treatment and stigma is not straightforward. An estimated 27% of Americans would prefer not to work closely with a woman living with HIV⁵.

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 UK⁶

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, Lebanon⁷

Some people have to contend with stigma even before their HIV is considered. Older people for example, are sometimes seen as part of a non-economically productive community who consume resources without contributing. Older people living with HIV may therefore have a double burden.

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."⁸

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 HIV status or to take antiretroviral drugs⁹. 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.

Research by the International Centre for Research on Women (ICRW) found the possible consequences of HIV-related stigma to be¹⁰:

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

Some of these consequences refer to ‘internal stigma’ or ‘self-stigma’. Internal stigma refers to how someone with HIV thinks about themselves and how they believe that the public perceives someone with HIV. People living with HIV/AIDS may impose stigmatizing beliefs and actions on 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 Vietnam¹¹

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 exacerbates 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.

The widespread fear of stigma is held accountable for the relatively low uptake of prevention of mother-to-child transmission (PMTCT) programmes in countries where treatment is free. In the case of Botswana, for example, despite the fact that the service is available at every antenatal centre in the country, only 26% of pregnant women availed themselves of the opportunity to protect their unborn children. Over half refused to take a test, and nearly half of those who tested positive did not go on to accept treatment¹².

Types of HIV/AIDS-related stigma and discrimination

AIDS-related stigma can lead to discrimination towards people living with HIV/AIDS. AIDS-related discrimination means that people are treated negatively and denied opportunities on the basis of their HIV status. This discrimination can occur at all levels of a persons daily life, for example, when they wish to travel, use healthcare facilities or get a new job.

Government

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

In 2008, UNAIDS reported that 67% of countries now have some form of legislation in place to protect PLWHA from discrimination¹³. However, Ban Ki-moon, Secretary-General of the United Nations, believes that ‘almost all permit at least some form of discrimination’¹⁴.

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 the disease poses a public health risk. Below are some examples of government level stigma and discrimination against people living with HIV/AIDS:

• President Museveni of Uganda supports the national policy of dismissing or not promoting members of the armed forces who test HIV positive¹⁵.
• The Chinese government advocates compulsory HIV testing for any Chinese citizen who has been living outside of the country for more than a year¹⁶.
• The UK legal system can prosecute individuals who pass the virus to somebody else, even if they did so without intent.

Healthcare

The withholding of treatment, hospital staff refusing to treat patients, HIV testing without consent, lack of confidentiality, and denial of hospital facilities and medicines are all ways that PLWHA can experience stigma and discrimination in healthcare settings. Such responses are often fuelled by ignorance of HIV transmission routes amongst doctors, midwives, nurses and hospital staff.

...they covered the chair, the light, the doctors were wearing three pairs of gloves...

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% of respondents reported breaches of confidentiality by health workers¹⁷.

Doctors in healthcare setting 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 die¹⁸. 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…”¹⁹

A review of research into stigma in health care settings advocated a multi-pronged approach to tackling it, requiring action on the individual, environmental and policy levels. 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.²⁰

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. ²¹

Employment

In the workplace, PLWHA 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. 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 UK²²

“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, India²³

Restrictions on travel and stay

Many countries have laws that restrict the entry, stay and residence of people living with HIV. Almost sixty countries, territories and areas have restrictions that specifically apply to HIV or AIDS based on positive status alone. This number does not include those countries where the legislation uses language such as "contagious" or "transmissible diseases" if HIV and AIDS are not mentioned specifically.

UNAIDS has identified around a dozen restrictions applying to HIV-positive people regarding entry, stay and residence.

Seven countries including China and the United States require a declaration of HIV status which can result in HIV-positive people being denied entry or stay, or the need for discretionary approval. However, the United States are set to repeal this law in January 2010.²⁴ Twenty-six countries including Egypt, Russia, China, Korea and the U.S. deport foreigners based on their positive status alone.

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, the U.S. and Syria.

A database maintained by the German AIDS Federation, the European AIDS Treatment Group and the International AIDS Society, presents updated information on such travel restrictions (if there are any) in 196 countries: www.hivtravel.org.

This information is also presented in a UNAIDS document which UN country members were asked to verify: ‘Mapping of restrictions on the entry, stay and residence of people living with HIV’.

Deportation of people living with HIV has potentially life threatening consequences if they have been taking antiretroviral drugs. 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. As Human Rights Watch have pointed out, this practice could contravene international law.²⁵

Community

Community level stigma and discrimination towards people living with HIV/AIDS is found all over the world. A community’s reaction to somebody living with HIV/AIDS can have a huge effect on that person’s life. If the reaction is hostile a person may be ostracised and 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 ²⁶

Community-level stigma and discrimination can manifest as ostracism, rejection and verbal and physical abuse. In extreme circumstances it has extended to acts of violence and 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 status²⁷.

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 PLWHA. However, not all family responses are positive. HIV-infected 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, Zimbabwe²⁸

The way forward

The presence of treatment makes this task easier; where there is hope, people are less afraid of AIDS...

HIV-related stigma and discrimination severely hamper efforts to effectively fighting 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 evicted 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 year 2007, 33 million people were living with HIV and during the year 2 million died from AIDS-related illness. Combating stigma and discrimination against people who are affected by HIV/AIDS is vital in the process of 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? A certain amount can be achieved through the legal process. In some countries PLWHA lack knowledge of their rights in society. They need to be educated, so they are able to challenge the discrimination, stigma and denial that they meet. Institutional and other monitoring mechanisms can enforce the rights of PLWHA and provide powerful means of mitigating the worst effects of discrimination and stigma.

"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 ²⁹

However, no policy or law can alone combat HIV/AIDS related discrimination. The fear and prejudice that lie at the core of the HIV/AIDS discrimination need to be tackled at the community and national levels. 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 makes this task easier; where there is hope, 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. In the future, the task is to confront the fear-based messages and biased social attitudes, in order to reduce the discrimination and stigma of people who are living with HIV or AIDS.

What's this?

WHERE NEXT?

AVERT.org has more about:

• Global HIV & AIDS epidemic
• Children
• Injecting drugs, drug users and HIV
• HIV & AIDS education