Discrimination against people with HIV/AIDS

Discrimination against people with HIV/AIDS or serophobia is the prejudice, fear, rejection and discrimination against people afflicted with HIV/AIDS (PLHIV; people living with HIV/AIDS). Discrimination is one manifestation of stigma, and stigmatizing attitudes and behaviors may fall under the rubric of discrimination depending on the legislation of a particular country. HIV stands for human immunodeficiency virus. If left untreated, HIV can lead to the disease AIDS (acquired immunodeficiency syndrome).[1] HIV/AIDS is a sexually transmitted disease and cannot be cured, but with proper treatment, the individual can live just as long as without the disease.

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Discrimination
Specific forms
 
Social

HIV/AIDS discrimination exists around the world, including ostracism, rejection, discrimination, and avoidance. These pervasive forms of stigmatization actively hinder access to HIV/AIDS screening and care.[2] Specifically, consequences of stigma and discrimination against PLHIV may result in low turn-out for HIV counselling and testing, identity crises, isolation, loneliness, low self-esteem and lack of interest in containing the disease.[3]

Much HIV/AIDS stigma or discrimination involves homosexuality, bisexuality, promiscuity, sex workers, and intravenous drug use.

In many developed countries, a strong correlation exists between HIV/AIDS and male homosexuality or bisexuality (the CDC states, "Gay, bisexual, and other men who have sex with men (MSM) represent approximately 2% of the United States population, yet are the population most severely affected by HIV"[4]), and association is correlated with higher levels of sexual prejudice such as homophobic attitudes.[5][6] An early name for AIDS was gay-related immune deficiency or GRID. During the early 1980s, HIV/AIDS was "a disorder that appears to affect primarily male homosexuals".[7]

Some forms of serious discrimination can include: being excluded from consideration for a job, being prohibited from buying a house, needing to pay extra money when renting housing, compulsory HIV testing without prior consent or protection of confidentiality; the quarantine of HIV infected individuals and, in some cases, the loss of property rights when a spouse dies.[8] HIV testing without permission or security may also be considered as wrongdoings against those with HIV. The United States' disability laws prohibit HIV/AIDS discrimination in housing, employment, education, and access to health and social services.[9] The U.S. Department of Housing and Urban Development Office of Fair Housing and Equal Opportunity enforces laws prohibiting housing discrimination based on actual or perceived HIV/AIDS status.

Structural violence

Structural violence is an important factor in the treatment of people afflicted with AIDS. Paul Farmer argues that social determinants affecting the lives of certain cultural groups alter their risk of infections and their ability to access treatment.[10] For example, access to prophylaxis, access to antiretroviral therapy, and susceptibility to illness and malnutrition are all factors which change people's overall risk of illness due to HIV/AIDS. This causes large difference in the rate of illness due to HIV/AIDS in various social/cultural groups.[11] Farmer also argues that social intervention may be key in altering the gap in treatment between these groups of people. Educating doctors on the interactions between social life and healthcare would help level out the injustices in healthcare.

Research

Current research has found that discrimination against people afflicted with HIV is a contributing factor for delayed initiation of HIV treatment.[12] As many as 20–40% of Americans who are HIV positive do not begin a care regimen within the first six months after diagnosis.[13] When individuals begin treatment late in the progression of HIV (when CD4+ T cell counts are below 500 cells/µL), they have 1.94 times the risk of mortality compared to those whose treatment is initiated when CD4+ T cells are still about 500 cells/µL.[14] In a 2011 study published in AIDS Patient Care and STDs (sample size 215), most of the barriers to care described involve stigma and shame.[15] The most common reasons of not seeking treatment are "I didn't want to tell anyone I was HIV-positive", "I didn't want to think about being HIV-positive", and "I was too embarrassed/ashamed to go".[15] The presence and perpetuation of HIV stigma prevents many who are able to obtain treatment from feeling comfortable about addressing their health status.[15][16]

Additional research has found that education decreases HIV/AIDS discrimination and stigma in communities. A 2015 research study by the University of Malaya found that in Nigerian populations, "Educating the population with factual information on HIV/AIDS is needed to reduce stigma and discrimination towards PLHIV in the community."[17] Surveys from 56,307 men and women from various educational and socio-economic levels and ages ranging from 15 to 49 years old, found that wealthier individuals with secondary and post-secondary were nonpartisan towards PLHIV. On the contrary, young adults, the poor, and men were more likely to be biased towards PLHIV. Many people also believe that AIDS is related to homosexuality.

Even so, research has found that societal structure and beliefs influence the prevalence stigma and discrimination. "The two concepts of right-wing authoritarianism and social dominance orientation have proven to be strong and reliable predictors of different types of prejudice."[18] Similar to sexism, racism, and other forms of discrimination, the raised and taught belief to view PLHIV as deviants and outcasts as children who become adults with warped view of PLHIV. "In order to cope with threat, people may adhere to a submissive authoritarian ideology, which will lead them to reject other groups that are perceived as deviant and may threaten their worldview and their system of values."[18]

There are challenges for medical volunteers and nurses involved in caring for people with HIV/AIDS. In third-world countries and some communities in the Americas, low resource funding can make it detrimental to the success of providing proper care to PLHIV that cannot otherwise afford healthcare or don't possess medical insurance or other forms of payments. The nurses or medical volunteers may lack the proper knowledge of how to treat the individuals too, if they lack resources and funding. In Province, South Africa, 223 nurses were surveyed on their qualification and knowledge of AIDS. The nurses scored on Maslach Burnout Inventory; AIDS Impact Scale and Beck's Depression Inventory. The total knowledge score obtained by all the participants ranged from 2 to 16, with an average of 12.93 (SD = 1.92) on HIV/AIDS knowledge.[19] The rise of PLWH impacts on the already burdened health-care workforce and predisposes nurses to workplace stress as they carry out their duties of caring for PLWH.[19] The discriminatory behaviors of healthcare workers who are expected to be more knowledgeable about epidemiology and control of HIV including its social aspects are not helping matters. They often take extreme precaution against HIV positive clients for fear of transmission, and at times may refuse HIV positive clients some aspects of care. This is supported by another study in which health staff was said to be worried about occupational exposure, with high levels of anxiety and fear when dealing with HIV-positive persons[20]

In some countries, to prevent the knowledge of PLHIV, medical reports do not reveal HIV/AIDS study. In Africa, a person's cause of death may be concealed in order for policies to pay out.[21] This distortion of information does not help in the fight against the spread of HIV and AIDS. Medical volunteers, nurses, and doctors, especially in low-income areas, will disclose their status without fear of rejection, isolation and discriminated against.[22]

The psychological support for PLHIV in certain countries around the world scarce. In some places like China and Africa, PLHIV have been noted to have high level of stress due to discrimination and family members contributes to stress level among PLHIV. Research is still being done to see if therapy and other psychological services will be a buffer between the discrimination and stress. The study highlights the importance to reduce discrimination toward PLHIV and the difficulty to alleviate its negative consequences. In China, It is warranted to improve mental health among PLHIV in China and it is still important to provide in PLHIV as it has direct effects on perceived stress.[23] PLHIV choose to not tell their HIV status to others, they tend to seek help from the health care professionals and programs and have considerable trust towards outside support. Health service providers are hence promising sources of social support for PLHIV.[23]

Violence

Discrimination that is violent or threatening violence stops a lot of individuals for getting tested for HIV, which does not aid in curing the virus.

Violence is an important factor against the treatment of people afflicted with AIDS. A study done on PLHIV in South Africa shows that out of a study population of 500, 16.1% of participants reported being physically assaulted, with 57.7% of those resulting from one's intimate partners; such as husbands and wives. The available data show high rates of participants socially isolating themselves from both friends and family, in addition to avoiding the seeking of treatment at hospitals or clinics, due to increasing internalized fears.[24] Any violence against HIV infected individuals or people who are perceived to be infected with HIV can severely shut down the advancement of treatment in response to the progression of the disease.

Paul Farmer argues that social determinants affecting the lives of certain cultural groups alter their risk of infections and their ability to access treatment.[25] For example, access to prophylaxis, access to antiretroviral therapy, and susceptibility to illness and malnutrition are all factors which change people's overall risk of illness due to HIV/AIDS. This causes large difference in the rate of illness due to HIV/AIDS in various social/cultural groups. Farmer also argues that social intervention may be key in altering the gap in treatment between these groups of people. Educating doctors on the interactions between social life and healthcare would help level out the injustices in healthcare.

Influence on society

Stigma

HIV/AIDS stigma has been further divided into the following three categories:

  • Instrumental AIDS stigma—a reflection of the fear and apprehension that are likely to be associated with any deadly and transmissible illness.[26]
  • Symbolic AIDS stigma—the use of HIV/AIDS to express attitudes toward the social groups or lifestyles perceived to be associated with the disease.[26]
  • Courtesy AIDS stigma—stigmatization of people connected to the issue of HIV/AIDS or HIV- positive people.[4]

HIV-related stigma is very common worldwide.[27] People who are infected with HIV may be either deliberately or inadvertently engaged in selective avoidance, ostracism or denigration of their behaviour.[28] It even persists after person's death: in the USA bodies infected with AIDS were buried for years on the Hart Island, away from the rest of the corpses, because it was believed that the dead AIDS victims would contaminate the other corpses with the disease[29].

Research done in South Africa, about the stigma and discrimination in communities, has found that PLHIV not only experience high levels of stigma that negatively impact all spheres of their lives, also interferes psychologically. Internalized stigma and discrimination ran rampant in the study, but also throughout the PLHIV community. Many PLHIV in South Africa blamed themselves for their current situation.[30] Research done in Iran suggests that lack of general knowledge about HIV/AIDS and false beliefs create an environment where HIV-related stigma can grow and lead to a series of negative consequences for PLHIV.[31] Globally, nearly half of all people infected with HIV are women.[32]

Stigma is often enforced by discrimination, callous actions, and bigotry. In response, PLHIV have developed self-depreciating mindsets and coping skills to deal with the social repercussions versus accepting of their current status and seeking help.

People who are HIV positive often deal with stigma, even though with the proper medication this can be manageable lifelong disease.And the existence of AIDS stigma will make AIDS patients under psychological pressure, which is detrimental to their AIDS treatment. According to the survey, women with AIDS undertook higher levels of depression, anxiety and stress than women without AIDS.[33] It is now possible for a person who HIV+ to have intimate relationship with someone who is HIV- and not pass the disease to them. It is also possible for a mother who is HIV+ to not pass it to her child.[34] In developing countries, people who are HIV+ are discriminated against at work, school, their community, and even in healthcare facilities.[35] Discrimination may also increase the spread of HIV because fewer people will want to get tested. In addition, because of the stigma of AIDS, people living with AIDS tend to keep their HIV status confidential.[36] They are reluctant to disclose their HIV status to others, including their family, friends and general practitioners.[37] Because AIDS patients choose not to disclose AIDS, which is also likely to increase the spread of AIDS.

Societal relationships

Accordingly, in countries such as Nigeria, PLHIV are less likely to disclose their HIV status, due to the repercussion of exclusion of their community. "In most situations, in order to prevent social rejection, PLHIV will not disclose their HIV status to avoid being isolated from participating in the socio-cultural events." This leads to very high-risk behaviors of passing the illness along to others or delaying the proper treatment. PLHIV, when shut off from their community. can feel isolated, lonely, afraid, a lack of motivation, and identity problems. Stigma enhances the spread and denies the medical research of HIV/AIDS because the social and medical support are gone. Those individuals can no longer feel like part of society, which, as humans, we need communities to feel understood and wanted.

Family and other intimate relationships play a role in the death rate of PLHIV. Due to the fear of isolation, ignorance, denial, and discrimination, people will allow HIV to develop into AIDS, further decreasing life expectancy, since the body's immune system function will have been significantly lowered. Research done in at Mvelaphanda Primary School children, in Tembisa, Ekurhuleni Metropolitan Municipality in Gauteng, South Africa. Many of the children were orphans due to the death of parents, had sibling deaths, and even some themselves, who were born with HIV. It was found through survey that if there is no behavioral change towards HIV/AIDS than no change to fight the epidemic will occur. At Mvelaphanda Primary school, their mortality rate is increasing in their children, especially young women. These women are more at risk than their male counterparts due to many being involved with older men who have various partners and do not participate in safe sex practices. Some of these students are themselves parents of students at the school. The problem is that even when family members are informed of the cause of death, which is likely to be AIDS, they choose to inform people that the cause of death was "witchcraft". Children and other family members tend to deny the truth and are raised with the belief that HIV and/or AIDS does not exist and they fear to be bewitched than being infected by the virus.

Along with family bonds and intimate relationships, a spiritual relationship is strained for PLHIV. In a research study done in the western region of Saudi Arabia. The stigma is profound in Saudi Arabia as Islam prohibits behaviours associated with risk factors related to transmission of HIV, such as non-marital sex, homosexuality and intravenous drug use. Fear and vulnerability included fear of punishment from God, fear of being discovered as HIV/ AIDS-positive and fear of the future and death. PLHIV experienced isolation and lack of psycho-social and emotional support. In response to their experiences many participants accepted their diagnoses as destiny and became more religious, using spirituality as their main coping strategy.

See also
  • Criminalization of HIV transmission
  • HIV exceptionalism

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