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 behaviours that people disapprove of (like homosexuality, drug use, sex work or infidelity)
- HIV is only transmitted through sex, which is considered a taboo subject in some cultures
- 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 behaviour and misperceptions of personal risk.1
In Somalia, most people associate HIV with infidelity, to the extent that some people living with HIV travel to neighbouring countries to receive treatment in an effort to hide their condition. Despite government backed TV and radio campaigns to encourage conversation about HIV, stigma continues, and accessing treatment remains difficult for people living with HIV.2
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 are often directed towards these groups simply because others disapprove of their behaviours.
Stigma also varies depending on the dominant transmission routes in a 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.3
These people are increasingly marginalised, 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.4
In 2014, the World Health Organisation (WHO) released the Consolidated guidelines on HIV prevention, diagnosis, treatment and care for key populations, reflecting the need for more focused HIV prevention initiatives for these groups and ways to prevent stigma.
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.5
One study found that participants who reported high levels of stigma were over four times more likely to report poor access to care.6 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 behaviours, including use of family planning services.” 7
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 Centre 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 caregiving in the home
- loss of hope and feelings of worthlessness
- loss of reputation.7
Self-stigma, or internalised stigma has an equally damaging effect on the mental wellbeing of people living with HIV. This fear of discrimination breaks down confidence to seek help and medical care.1
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 7
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 are prohibited from travelling, using healthcare facilities or seeking 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 2014, 64% of countries reporting to UNAIDS had some form of legislation in place to protect people living with HIV from discrimination.8
However, criminalisation of key affected populations remains widespread with 60% of countries reporting laws, regulations or policies that present obstacles to providing effective HIV prevention, treatment, care and support.9 In 2015, 75 countries worldwide listed homosexuality as a crime.10
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.11
Examples of governmental discrimination
- Russia bans harm reduction initiatives for people who inject drugs, including in Crimea, Ukraine.12
- In 2014, Uganda passed a bill to re-enforce anti-homosexuality legislation.13
- The Chinese government enforces a compulsory HIV test for anyone applying for a study/work visa longer than six months.14
Healthcare professionals can medically assist someone infected or affected by HIV, and also provide life-saving information on how to prevent it.4
However, healthcare often is not confidential, contains judgement about a person’s HIV status, behaviour, sexual orientation or gender identity and is not respectful. These views are often fuelled by ignorance of HIV transmission routes among healthcare professionals.15
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, have same-sex relations, or inject drugs for example.16
To address this 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 should be encouraged not to associate HIV with immoral behaviour.
Examples of healthcare discrimination
- Lack of confidentiality – many people living with HIV and AIDS do not get to choose how, when and to whom they 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.17
- Lack of prioritisation – 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.18 As a result, some HIV and AIDS patients are not prioritised 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.19 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 18
By reducing stigma in the workplace (via HIV and AIDS education, offering HIV testing, and contributing towards the cost of antiretrovirals) 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.20
Examples of employment discrimination
- In December 2010, a report noted that the Chinese national policy for recruiting civil servants specifies that “those who suffer gonorrhoea, syphilis, chanchroid, venereal lympho-granuloma, HPV, genital herpes or HIV will be disqualified.“ 21 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”.22
- 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.23 24
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, socialising 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.25
Examples of community, school and family discrimination
- 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 status.26
- 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 stigmatising attitudes towards people living with HIV. Interestingly, these were also the people who perceived their own risk of HIV infection to be non-existent, and were not likely to have ever taken an HIV test.27
- 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 – actively contributed to psychological distress.28 A global study found that 35% of participants feared losing family and friends if they disclosde their HIV status.29
Restrictions on entry, travel and stay
As of September 2015, 35 countries have laws that restrict the entry, stay and residence of people living with HIV. Lithuania became the most recent country to remove such restrictions.30
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.31
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.32
The use of specific HIV, AIDS and sexual reproduction education programmes that emphasise 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.33
Photo credit: ©iStock/Stefan_Redel