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You don't die of HIV, you die of stigma

Published

Author: Jelena Jevtović, clinical psychologist
3.12.2022.

It is estimated that there are around 60 million people infected with the human immunodeficiency virus (HIV) in the world, and it is believed that 25 million people have died of AIDS so far. During the COVID-19 pandemic, the number of newly discovered cases of infection fell, which is related to reduced attendance at health centers for testing. During 2022, the number of detections increased as more people were tested.

You can live with HIV

Today, thanks to modern therapy, it is possible to live with HIV, and a person who has HIV cannot transmit it in any way to another person while on therapy. In terms of treatment, science has advanced a lot, so the action of therapy is aimed at preventing the development of AIDS, i.e. a syndrome that represents the last stage of the course of HIV infection. AIDS, in fact, means that the immune system is so weakened that infections that are otherwise benign in healthy people can be fatal for people with AIDS. In addition to therapy to treat HIV, there is prevention therapy that is used before or after risky intercourse. The so-called PrEP therapy (abbreviated from: pre-exposure prophylaxis), which is taken, as the name suggests, before exposure to a risky relationship, protects a person from HIV (but not from other sexually transmitted infections!), while PEP is a therapy (abbreviated from: post-exposure prophylaxis) that is started no later than 48 (or 72 hours) after risky intercourse and lasts for 28 days.

The symptoms of HIV are not specific and can appear many years after infection, so the only way to reliably know the infection status is through testing. It is recommended that every sexually active person be tested at least once in their life. Testing is mandatory for pregnant women, so that the mother can start treatment on time and thus prevent the transmission of HIV to the child. HIV testing is anonymous, confidential and free, and can be done at the Institute for Student Healthcare (available to all citizens, not only students), the City Institute for Public Health, as well as non-governmental organizations such as Potent, Duga, Red Line, Jazas and others. Five years ago, a new therapy for HIV was introduced, but for three years we have been waiting for a more modern therapy, which is especially important for people resistant to current therapy, as well as for people with associated diseases (comorbidities). Therapy for HIV positive people in Serbia is free. The new drugs are not more expensive than the drugs currently used, but good will and determination are needed to put the new drugs on the Fund's list.

Although much is known about HIV today, stigma and discrimination have not diminished. Why is that? First of all, due to the insufficient information of the public, even doctors. Many do not know how HIV is transmitted, they do not know that it is not possible to transmit it by hugging, kissing, staying in the same room, but only through blood and semen. Also, there is not enough information about risk relationships, methods of HIV prevention and treatment. Even when people are well or sufficiently informed, discrimination still occurs because it is assumed that the person is responsible and guilty for getting infected, as well as for not behaving appropriately. Ways of infection, in addition to risky relationships, also include forced relationships, violence, abuse, medical error, and more. Although it is often thought that HIV/AIDS cannot and will not happen to us and that it only happens to sex workers, LGBT+ people, intravenous drug users, the truth is that those who have few partners can also get infected if they are not protected. Men who have relations with men, for example, are exposed to increased risk for anatomical-physiological reasons (not moral!) during anal intercourse, but this type of intercourse is widely accepted among heterosexual couples as well. As for intravenous users of psychoactive substances, research shows that HIV is the least likely to be transmitted through this route, as equipment is available that is mostly used by one person and not shared with others. Women often find out that they have HIV late because they think they are at a lower risk than men.

How does stigma affect people living with HIV?

Due to stigma and discrimination, some people delay testing because they are afraid of finding out they have HIV and fear of being judged by society. Not testing and delaying testing is very dangerous because it wastes valuable time. When detected in time, further replication of the virus can be controlled. People who discover that they have HIV because of stigma refuse to go for check-ups with an infectious disease specialist and to use therapy, which is why resistance is created and AIDS occurs. HIV-positive people are afraid that someone will see that they take medicines, which is why they very often adjust the time of taking them when they are alone, move the pills to other bottles, hide them, and are afraid that their status will not be revealed during the trip. They are also afraid of whether they will be able to bring a larger amount of therapy if they are going on a long trip. Some countries do not allow HIV-positive people to stay and work at certain jobs. Until recently, AIDS victims in Serbia had to be buried in tin boxes, even though they could not transmit HIV. Hairdressers and dentists, for example, generally refuse to provide their services to those with HIV. Relatives and society, very often, ostracize the person and label him, neglecting the personality and observing them exclusively through the infection.

Common emotions after an HIV diagnosis are feelings of sadness, anger, guilt, isolation, anxiety, and denial. People very often fall into depression due to lack of support from loved ones and fear of the future. When it comes to stigma, we can talk about experienced stigma and discrimination, then about anticipation of stigma and about internalized stigma (autostigma). An HIV-positive person has to fight for his health as well as to be accepted by the environment. In response to the reaction of the environment, they may lose self-esteem and hope for good integration into society, which is why they withdraw and isolate themselves, expecting to be stigmatized. Such repeated stressful and sometimes traumatic experiences lead to self-stigma, that is, to the fact that the person begins to discriminate against themselves and treats themseles the way others do. Social stigma and isolation are harder to bear than the diagnosis itself, therefore it is important to work not only on antiretroviral therapy, but also on education and reducing stigma towards HIV-positive people.

Source: Hemofarm Foundation