Thanks for stopping by to check out another day in my life. It is a hectic one as I get ready for another trip on the road with Dab the AIDS Bear.
There just never seems to be enough hours in a day. But there really is not enough hours when I am getting ready for another appearance with Dab the AIDS Bear, having to pack, run the project and do everything else I do every week. So I am feeling a little stressed out today because I am behind.
I would like to talk about stigma today because it has come up in conversation a lot recently.
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.
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.
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.
In Western countries where injecting drug use and sex between men have been the most common sources of infection, it is these behaviors that are highly stigmatized.
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.
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
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.
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.
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.
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.
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 workers19.
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 die20. 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.
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:
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.
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 status25.
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.
The way forward
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.
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.
Those are my thoughts. What about yours? Drop me a line and let me know.
Until we meet again; here's wishing you health, hope and happiness.
big bear hug,