Stigma surrounding HIV and AIDS directly damages people’s health. We covered the facts about HIV transmission and prevention—now here’s a look at the discrimination caused by HIV stigma, and what people are doing to end it.
HIV-related stigma exists worldwide, although it manifests itself differently across countries, communities, religious groups, and individuals. In the USA, men who have sex with men account for up to 67% of new HIV transmission cases (1), and stigma is often linked with homophobia. In sub-Saharan Africa, heterosexual sex is the main route of HIV transmission (2), and HIV-related stigma in this region is mainly focused on infidelity and sex work (3).
Stigma comes from misinformation
Many people still believe myths which date back to the emergence of the AIDS epidemic in the 1980s. Some common misconceptions include:
“HIV and AIDS are no longer an important issue”
False: HIV and AIDS are still very present in the lives of many people. The World Health Organization (WHO) estimates that 36.9 million people around the world are HIV positive, with 1.8 million new infections in 2017 alone. Up to one quarter of these people don’t know that they have HIV. Even with improved medications, the WHO estimates that in 2017 almost a million people died of HIV-related causes (4).
In the US, 38,281 people were diagnosed with HIV in 2017 (5). In 2015 it was estimated that around 1.1 million people total in the US were living with HIV, and 1 in 7 of these people didn’t know that they were HIV positive (6).
“HIV and AIDS are always associated with death”
False: With advances in treatment and preventive care, rates of HIV infection, AIDS, and related deaths are decreasing overall (4). There is no cure for HIV, but improved medications are helping more people to live longer. Even when comparing antiretroviral therapy (ART) medications from the mid-1990s with ARTs from 2010, life expectancy is continuing to increase. From the mid 1990s to 2010, 9 to 10 years has been added to the life expectancy of people who started to take ARTs in their 20s, so their estimated life expectancy is now only slightly below the general population (7).
“I shouldn’t have sex with someone who has HIV”
That’s up to you: There have been vast improvements in treatment and prevention options for HIV. HIV positive people who consistently and properly take their ART medications can lower their viral loads so much that HIV may not even be detectable on a blood test—this is called an undetectable viral load. These medications help to keep a person with HIV healthy, and reduce the chance of transmitting HIV to another person (8).
When someone with HIV has an undetectable viral load, there’s no risk of transmitting the virus to someone who is HIV negative. However, if medication is taken incorrectly or stopped, HIV viral loads will increase again and transmission can occur (8).
Discussing risks with any sexual partner and practising safer sex (using condoms and other barrier methods) is the most reliable way to protect against STI and HIV infection (8). For people who don’t have HIV but are planning to have sex with an HIV positive person, there are medications available called Pre-exposure prophylaxis (PrEP), which can be taken daily to decrease the risk of contracting HIV from a partner (8).
“HIV only affects certain groups of people”
False: HIV doesn’t discriminate. People can contract HIV as babies during birth or breastfeeding, as well as through blood transfusions, sex, or sharing needles. No one deserves to be judged, shamed, praised or pitied, because of how they contracted HIV. There’s no reason to ask people living with HIV about how they contracted the virus—that’s personal information which everyone has the right to keep private.
“HIV can be transmitted via sneezing, toilet seats, or shaking hands”
False: HIV is transmitted through the exchange of certain types of bodily fluids including: blood, semen, breast milk, and vaginal fluids. Saliva, tears, sneezing, hugging, or touching shared objects like cutlery or toilet seats, cannot transmit HIV (9,10).
For more facts, check out our article about HIV transmission and prevention.
Stigma is bad for everyone
Stigma might come from myths, but the effects are real. People with HIV face poor treatment in educational, healthcare, and work settings, the erosion of their rights, and psychological damage. Some are shunned by their community, which may mean losing their home and livelihood. Stereotypes about who is at risk of HIV affect people who don’t even have the virus.
Fear of stigma and discrimination is the main reason why people are reluctant to seek healthcare services, disclose their HIV status, and take antiretroviral drugs (11). 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, increases the likelihood of transmitting HIV to others, and can cause early death.
How we can end stigma
Many individuals and organizations are fighting to end HIV-related stigma and improve the lives of people with HIV and AIDS. Here are a few things they’ve already achieved, and how you can help.
Educate healthcare workers
In Bangladesh, healthcare workers undertook a training program focusing on reducing stigma and discrimination against young people who access sexual health services. A 2016 study found that after the training program they changed their attitudes significantly and made less moral judgements about sexually active young people, young pregnant women, men who have sex with men, and sex workers. The attitudes of the healthcare workers improved towards people with HIV, but still some biases did remain. In the same study, young people using these sexual health services also reported an improvement in the quality of healthcare they received (12).
Protect the privacy of people who are HIV positive
Laws that criminalize HIV non-disclosure, exposure, and transmission deter people from HIV testing, and put the responsibility of HIV prevention solely on the partner living with HIV (13). In March 2015, a Kenyan law that demanded that people living with HIV to disclose their HIV status and criminalized HIV exposure was declared unconstitutional (14). In May of the same year, the Australian state of Victoria repealed the country’s only HIV-specific law, which had criminalized the intentional transmission of HIV. The repealed law carried a maximum penalty of 25 years imprisonment, more than the maximum 20 years for manslaughter (15).
Remove travel restrictions
Between 2008 and 2015, around the world, 24 laws restricting travel and residency for people with HIV were removed (16). But there is still more work to be done: Brunei, Equatorial Guinea, Iran, Iraq, Jordan, Papua New Guinea, Qatar, Russia, Solomon Islands, United Arab Emirates, and Yemen still categorically refuse entry to people with HIV (17).
Support people living with HIV to work through internalized stigma
In India, a training program was created where women living with HIV could learn coping and stigma-reduction strategies. In addition to training, some of the women were provided with an Asha—a local woman trained in HIV issues, or an accredited social health activist. The Ashas accompanied the women to health appointments, and gave them advice on how to cope with and address HIV-related discrimination. Six months after the training sessions, the women who had been supported by an Asha reported greater reductions in internalized stigma, were more likely to follow their treatment protocol, and had fewer depressive symptoms than those who did not have an Asha assisting them (18).
Improve the status of women
Women living with HIV are often harshly judged, due to HIV being associated with promiscuity and the gendered double-standard that a “good woman” would not engage in activities that could lead to HIV acquisition (19). Women living with HIV not only experience stigma and discrimination from their friends, family, and community, but also from healthcare workers (20). They also experience more HIV related stigma than men, including more feelings of negative self image, and more public stigma surrounding how their community views them (21). A lot needs to be done to improve the status of women worldwide. In the meantime, support groups for women with HIV can help individual women to navigate these challenges (20).
Fight inequality and discrimination
People who are marginalized—including trans women, men who have sex with men, sex workers, and drug users—face legal and social inequities which put them at higher risk of HIV infection (22). Discrimination against these groups negatively affects their health, and reduces access to healthcare—including HIV testing and treatment (22). Many people experience multiple forms of discrimination—not just that related to their HIV status, but also with respect to gender, sexual orientation, race, etc. This can affect people across many components of their lives (23).
Law changes can help to improve people’s health and reduce stigma. Portugal decriminalized personal drug use in 2001, and this has played a part in falling HIV rates among IV drug users there (24,25). Both UNAIDS and WHO advocate for the decriminalization of sex work to prevent the spread of HIV, and it’s predicted that this could reduce new HIV infections in female sex workers by 33-46% over the next 10 years (26,27,28).
But legal advances are not enough, cultural norms also need to change. How can we make this happen? By looking to the leadership of the people with the most knowledge and expertise—people with HIV themselves.
Listen to people living with HIV
People with lived experience of a disease or social reality deserve a voice in decisions that affect them. This means that people with HIV must be at the forefront of the movement to end HIV and AIDS stigma.
Start with yourself
There’s a lot to be done to end HIV stigma, but you can help make a difference. Educate yourself and your friends: get the facts about HIV transmission and prevention.
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