Advances in medicine have transformed HIV infection, which without treatment can lead to AIDS and death, into a chronic condition that can now be effectively controlled. Yet stigma surrounding people living with HIV, as well as self-stigma, remains a major barrier to testing, diagnosis and access to healthcare. Experts stress that without better education and breaking the taboo surrounding HIV, it will be difficult to bring the epidemic under control. This issue is highlighted by the Polish awareness campaign “Pozytywnie też znaczy dobrze” (“Positive Can Also Mean Good”).
“HIV infection can affect anyone. We should remember that the virus can be transmitted through blood, during sexual contact and from mother to child. Unfortunately, awareness of HIV in Poland is still relatively low, and what is particularly concerning is that knowledge is also insufficient among some healthcare professionals. There is still a certain reluctance to offer patients HIV testing,” Dr Iwona Cielniak, an infectious diseases specialist, told Newseria.
People living with HIV who take their medication regularly and maintain an undetectable viral load do not transmit the virus through sexual contact. This principle is internationally known as U=U – “Undetectable = Untransmittable”.
Although knowledge about HIV is far greater today than it was several decades ago, many myths dating back to the early years of the epidemic continue to shape attitudes towards people living with the virus.
“More and more people encounter a positive reaction, openness and often genuine understanding. Unfortunately, that understanding can sometimes disappear very quickly. After the initial acceptance and respect, personal beliefs, fears or feelings of shame may come into play, and the reaction can change,” explains Dr Bogna Szymańska-Kotwica, a psychologist and psychotherapist.
Research conducted by the European Centre for Disease Prevention and Control (ECDC), together with the European AIDS Treatment Group and AIDS Action Europe, among more than 3,200 people living with HIV in 55 countries across Europe and Central Asia, found that 59% of respondents had difficulty telling other people about their HIV status.
Almost one in three had not disclosed their status to any family member, while one in four said they had experienced rejection by friends because of HIV.
“People living with HIV are most afraid of rejection. Human beings need to belong to a group and form relationships. When someone feels different or feels that they do not belong, self-stigma can emerge,” says Dr Szymańska-Kotwica.
“The most common self-stigmatising beliefs involve feeling inferior, believing that as a person living with HIV you do not deserve love or relationships, or questioning whether you should have children. These concerns are not necessarily biological. They are often moral, ethical or emotional – whether it is somehow wrong for a person living with HIV to have a family, children or enter a new relationship. Such beliefs are very often built around negative thought patterns and cognitive distortions.”
The World Health Organization identifies stigma as one of the major barriers preventing people from getting tested and starting treatment early. It can also influence the behaviour of people living with HIV by encouraging them to conceal their status or, in some cases, abandon treatment.
ECDC research points to similar concerns. Over the previous year, 26% of people living with HIV feared being treated worse by healthcare professionals, 21% were afraid to seek healthcare because their HIV status might be disclosed, and 16% avoided healthcare altogether because they feared discriminatory treatment.
One in three respondents said they had felt badly treated in a healthcare setting, while one in four reported that treatment had at some point been refused or delayed because of their HIV status.
Participants in the “Pozytywnie też znaczy dobrze” campaign have chosen to speak publicly about their diagnoses and everyday lives in order to challenge stereotypes and make HIV a subject people can discuss more openly.
“HIV is still a taboo subject in our society, largely because it is associated with sex, and sex is something that is often never discussed at home. It is also taboo because schools still lack reliable education. I know young people who simply do not know how HIV can be transmitted. This is a consequence of the lack of proper sex education in schools,” says Magdalena Glewicz, one of the campaign participants.
Results from the international Positive Perspectives study also show that effective medical treatment does not eliminate all the difficulties faced by people living with HIV. Their quality of life is influenced by social factors as well, including acceptance by others, the ability to speak openly about HIV and access to reliable information.
In the Polish part of the study, 100% of respondents said they did not feel comfortable disclosing their HIV status to other people.
“More and more people are willing to ask questions and talk about HIV. Even among people I know, I can see that some who have been living with HIV for years are beginning to speak openly about it. They tell friends, talk about it in the media or disclose their status at work. It is a good sign that we are becoming less afraid to discuss important issues,” says Antoni Bremer, another participant in the “Pozytywnie też znaczy dobrze” campaign.
Since the beginning of the HIV epidemic in Poland, more than 35,000 infections have been diagnosed. Experts estimate, however, that as many as one in five people living with HIV may be unaware of their status.
Increasing the number of HIV tests and ensuring that treatment begins as early as possible therefore remain among the key public-health challenges.
“The virus can affect anyone. Anyone who is sexually active should get tested. It is worth knowing your status, because if the result is positive, you can start treatment and live a normal life,” says Magdalena Glewicz.
HIV testing in Poland is available anonymously and free of charge at dedicated consultation and diagnostic centres. No referral or health insurance is required.
Early diagnosis allows treatment to begin quickly, helps people maintain good health and reduces the risk of further transmission. Yet many people still incorrectly fear ordinary everyday contact with someone living with HIV.
“I do not personally experience outright discrimination, but I do encounter stigma resulting from a lack of knowledge. One good example is someone I know who found out indirectly that I had HIV and reacted in horror: ‘What do you mean? We were sitting on the same sofa.’ Even though we know that a person cannot transmit HIV through touch – whether they are receiving treatment or not – this basic knowledge and awareness is still missing, even among young people,” Bremer says.
The “Pozytywnie też znaczy dobrze” campaign was launched by GSK in cooperation with HIV specialists, a psychologist and people living with the virus. Its aim is to combat stigma, improve public understanding of HIV and encourage more people to get tested.
Expanding access to testing and detecting infections at an early stage are also key elements of the global strategy to combat HIV. UNAIDS aims to end AIDS as a public-health threat by 2030.
