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 the disease. AIDS-related stigma is not static. It changes over time as infection levels, knowledge of the disease and treatment availability vary.
Kiren Kaur, 37, has come to terms with HIV she contracted from her husband in 1997. The HIV positive status, per se, is not difficult to deal with. But dealing with the stigma that comes with it is an excruciating experience. 'My HIV status does not bother me any more,' she told IPS at the global conference on AIDS that concludes in Vienna Jul. 23. 'It is the double stigma that I face as a widow and an openly HIV positive person that is painful. It is stigma that prevents me from enjoying an intimate relationship (with my family).'
Kaur was 24 years old when her husband died in her arms of AIDS. She suspects he contracted HIV before marrying her.
'My husband was depressed after he was told he had AIDS and he did not talk much. He did not say how he got HIV and I did not ask,' says Kaur, who is a Bangkok-based coordinator for Women of Asia Pacific Network of People Living with HIV/AIDS, a support group.
Kaur's in-laws blamed her for her husband's death. She was forced to return to her parents. For many years, she was too depressed to do anything. Her HIV positive status was holding her back, but in 2004, Kaur agreed to set up a support group at a hospital in Kuala Lumpur.
That opened up a slew of other avenues. She became a member of the Kuala Lumpur AIDS Support Services Society (KLASS), another support group, and got the opportunity to travel to Bangkok to attend the International AIDS Conference on a scholarship partly funded by the University Malaya Medical Centre.
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.
"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
"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
"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."
"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
AIDS-related stigma can lead to discrimination such as negative treatment and denied opportunities on the basis of their HIV status. This discrimination can occur at all levels of a person's daily life, for example, when they wish to travel, use healthcare facilities or seek employment.
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 ostracise people living with HIV, reinforcing the stigma surrounding the disease.
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. That medical staff should perhaps have a better understanding of HIV makes discrimination in healthcare settings all the more damaging.
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 workers.
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 die.20 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.
“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…”
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. 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
“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
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.
Five require a declaration of HIV status which can result in HIV-positive people being denied entry or stay, or the need for discretionary approval. 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.26
Twenty-two countries including Egypt, Russia, and South Korea 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 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 has pointed out, this practice could contravene international law.
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
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 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, Zimbabwe
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 2008, 33 million people were living with HIV with two million having died from AIDS-related illness that year. Combating stigma and discrimination against people who are affected by HIV/AIDS is a vital ingredient for 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 people living with HIV 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 encounter. Institutional and other monitoring mechanisms can enforce the rights of people with HIV 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