HIV Discrimination and Stigma
Welcome to another day in my life. Today is Wednesday and we have almost made it through the middle of another work week. I hope you are having a beary safe and great week so far.
One of the many downsides of living with HIV is living with the stigma of having the HIV virus. But do you know what that means?
HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS.
The consequences of stigma and discrimination are wide-ranging. Some people are shunned by family, peers and the wider community, while others face poor treatment in healthcare and education settings, erosion of their human rights, and psychological damage. These all limit access to HIV testing, treatment and other HIV services.
Why is there stigma around HIV and AIDS?
The fear surrounding the emerging HIV epidemic in the 1980s persists today. At that time, very little was known about how HIV is transmitted, which made people scared of those infected due to fear of contagion.
This fear, coupled with many other reasons, means that lots of people believe:
HIV and AIDS are life-threatening conditions associated with death
HIV is associated with behaviors that people disapprove of e.g. homosexuality, drug use, sex work or infidelity
HIV is only transmitted through sex, which often carries moral baggage
HIV infection is the result of personal irresponsibility
Being infected with HIV is the result of moral fault (such as infidelity or 'deviant sex') that deserves to be punished
Inaccurate information about how HIV is transmitted, creating irrational behavior and misperceptions of personal risk.
Infidelity is what most people think about when they hear HIV in Somalia, to the extent that people travel to neighboring countries to receive treatment, in an effort to hide their condition. Despite government backed TV and radio campaigns to break the silence, stigma continues and accessing treatment remains difficult for people living with HIV.
HIV stigma and key affected populations
Key affected populations are groups of people who are disproportionately affected by HIV and AIDS, such as men who have sex with men, people who inject drugs and sex workers. Stigma and discrimination is often directed towards these groups of people simply because others disapprove of their behaviors.
Stigma also varies 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 HIV-related stigma in this region is mainly focused on infidelity and sex work.
These people are increasingly marginalized not only from society, but from the services they need to protect themselves from HIV. Half of all new HIV infections worldwide are among people belonging to key affected populations.
In 2014, the World Health Organisation (WHO) released a specific set of guidelines on HIV services for key affected populations, reflecting the need for more focused HIV prevention initiatives for these groups.
How stigma affects the response to HIV
The WHO cites fear of stigma and discrimination as the main reason why people are reluctant to get tested, disclose their HIV status and take antiretroviral drugs.
One study found that participants who reported high levels of stigma were over four times more likely to report poor access to care. This contributes to the expansion of the global HIV epidemic 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 may have already progressed to AIDS. This makes treatment less effective, increasing the likelihood of transmitting HIV to others, and causing early death.
"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 behaviors, including use of family planning services."
How stigma affects people living with HIV
HIV-related stigma and discrimination exist worldwide, although they manifest themselves differently across countries, communities, religious groups and individuals.
Research by the International Center for Research on Women (ICRW) found the possible consequences of HIV-related stigma to be:
Loss of income and livelihood
Loss of marriage and childbearing options
Poor care within the health sector
Withdrawal of care-giving in the home
Loss of hope and feelings of worthlessness
Loss of reputation.
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 global HIV and AIDS epidemic as a whole.
Self-stigma / internalized stigma
Self-stigma, or internalized stigma has an equally damaging effect on the mental well-being of people living with HIV. This fear of discrimination breaks down confidence to seek help and medical care.
Self-stigma and fear of a negative community reaction can hinder efforts to address the HIV epidemic by continuing the wall of silence and shame surrounding the virus.
"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
Sources of HIV and AIDS-related stigma and discrimination
HIV and AIDS-related stigma can lead to discrimination, for example, when people living with HIV wish to travel, use healthcare facilities or seek employment.
A country’s discriminatory laws, rules and policies regarding HIV can alienate and exclude people living with HIV, reinforcing the stigma surrounding HIV and AIDS.
In 2012, UNAIDS reported that 61 percent of countries have some form of legislation in place to protect people living with HIV from discrimination.
However, criminalization of key affected populations remains widespread with 60 percent of countries reporting laws, regulations or policies which present obstacles to providing effective HIV prevention, treatment, care and support. In 2013, 78 countries worldwide listed homosexuality as a crime.
The 2014 International AIDS Conference (AIDS 2014) put the eradication of stigma and discrimination on its agenda, with its slogan “no one left behind” ensuring that non-discrimination is adhered to in the HIV response.
Examples of governmental discrimination
Russia bans harm reduction initiatives for people who inject drugs, including Crimea in Ukraine.
In 2014, Uganda passed a bill to once again enforce anti-homosexuality legislation.
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.
The Chinese government enforces a compulsory HIV test for anyone applying for a study/work visa longer than 6 months.
The UK legal system can prosecute individuals who pass the virus to somebody else, even if they did so without intent.
Healthcare professionals can medically assist someone infected or affected by HIV, and also provide life saving information on how to prevent it.
However, healthcare often is not confidential, contains judgement about a person’s HIV status, behavior, sexual orientation or gender identity and is not respectful. Such responses are often fueled by ignorance of HIV transmission routes among healthcare professionals.
Stigma prevents many people from being honest to healthcare workers when they seek medical help. People fear discrimination if they say they’re a sex worker, or they have same-sex relations, or inject drugs for example. The stigma people face in healthcare settings prevents them receiving the help they need.
To amend the issue, healthcare 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, and they should also be encouraged to not associate HIV with immoral behavior.
Examples of healthcare discrimination
Lack of confidentiality - many people living with HIV and 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.
Lack of prioritization - 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 and AIDS, who were seen as 'doomed' to die. 24 This frustration may mean that HIV and AIDS patients are not prioritized or are actively discriminated against.
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
By reducing stigma in the workplace (via HIV and AIDS education, offering HIV testing, and supplementing antiretroviral provisions) employees are less likely to take days off work, and be more productive in their jobs. This ensures people living with HIV are able to continue working, and the employer doesn’t lose productivity.
Examples of employment discrimination
In December 2010, a report noted that the Chinese national policy for recruiting civil servants specifies that:
“those who suffer gonorrhea, syphilis, chanchroid, venereal lympho-granuloma, HPV, genital herpes or HIV will be disqualified”.
The International Labour Organisation (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”. While Chinese teachers are not civil servants, recruitment policies are usually based upon those of the Chinese civil service. All of these activities are in breach of the ILO Code of Practice on HIV and AIDS, to which China is a signatory.
A man living with HIV in China filed a lawsuit in 2012 after he was denied a job as a primary school teacher when the employer found out he was HIV-positive. In January 2013, he won the case and received compensation. There is pressure now to remove health tests as part of any employment procedures in China – a notorious form of HIV discrimination.
A workplace program in Ghana found that offering screening for HIV and other health conditions resulted in more people taking up the screening. They didn't want to be seen taking an HIV test as it invokes assumptions from other people about their behaviors.
Community and household level stigma
Community level stigma and discrimination towards people living with HIV is found all over the world, with people forced to leave their home, change their daily activities such as shopping, socializing or schooling, face rejection and verbal and physical abuse.
Stigma and discrimination can also take particular forms within community groups such as key affected populations. For example, studies have shown that within some lesbian, gay, bisexual and transgender (LGBT) communities there is segregation between HIV-positive and HIV-negative men, where men associate predominately with those of the same status. Other members of LGBT 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.
People living with HIV can find themselves stigmatised and discriminated against within their own home. There is concern that women and homosexual family members are more likely than children and men to be mistreated.
Examples of community, school and family discrimination
In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbors in her township near Durban, South Africa, after speaking openly on World AIDS Day about her HIV status.
A study in Vietnam found that women, less educated people and those who had not moved from the rural area they grew up in were more likely to show stigmatizing attitudes towards people living with HIV. Interestingly, these were also the people who perceived their own risk of HIV infection being non-existent, and therefore were not likely to have ever taken an HIV test.
A survey of Dutch 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. 37 35 percent of a global study cited losing family and friends if they disclose their status as a concern surrounding disclosure.
Restrictions on entry, travel and stay
As of October 2013, 41 countries have laws that restrict the entry, stay and residence of people living with HIV. Tajikistan is the most recent country to remove such restrictions for people living with HIV, with these reforms signed by President Emomalii Rahmon on 14 March 2014.
Restrictions can include the need to disclose HIV status or 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.
Deportation of people living with HIV has potentially life-threatening consequences if they have been taking HIV treatment and are deported to a country that has limited treatment provision. 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 human rights law.
The use of specific HIV, AIDS and sexual reproduction education programs that emphasize the rights of people living with HIV is a well documented way of eradicating stigma. As well as being made aware of their rights, people living with HIV can be empowered in order to take action if these rights are violated.
Ultimately, adopting a human rights approach to HIV and AIDS is in the public’s interest. Stigma blocks access to HIV testing and treatment services, making onwards transmission more likely. The removal of barriers to these services is key to ending the global HIV epidemic.
Hope you have a beary safe and great Wednesday!
Until we meet again; here's wishing you health, hope, happiness and just enough.
big bear hug,