The stigma is a negative attitude or perception by others of an individual or groups of people because of their real or perceived qualities, which in fact is a stereotype. UNAIDS defines HIV-related stigma and discrimination as: “… the ‘devaluation process’ of people who live or are associated with HIV/AIDS. Discrimination following stigma is an unfair and discriminatory treatment of an individual based on his or her real or perceived HIV status”.
According to the Global Network of People Living with HIV/AIDS (GNP+), one of the greatest challenges that people living with HIV (PLHIV) face today is stigma and discrimination.
PLHIV face an established, anticipated, and internal stigma. An established stigma refers to HIV-related discrimination and can include acts of violence and marginalization. An anticipated stigma is awareness of negative social perceptions of HIV and the expectation that PLHIV will face prejudice and discrimination in the future. An internal stigma means approving negative beliefs, attitudes, and feelings of the individual because of her/his HIV positive status.
Manifestations of stigma: bias and behavior, insults, threats, accusations, harassment, intimidation, as well as refusal to provide medical care, dismissal from work, refusal to provide work, family refusal, physical violence, social avoidance and isolation, secrecy, etc.
Stigma affects people who are HIV-positive or suspected to be infected and include: children and young people, pregnant women, gays and lesbians, bisexual and transgender people, sex workers, intravenous drug users. Overall, stigma remains widespread in the HIV context, whether measured in terms of attitudes towards not infected ones or in terms of the experiences of people living with HIV.
Stigma exists in any country and is holistic in nature. For the first time, stigma towards PLHIV was raised in a statement at the AIDS briefing during the 42nd session of the UN General Assembly in 1987. Jonathan Mann, director of the WHO Global AIDS Program at that time, predicted three components of the HIV epidemic development: the first component is HIV infection, the second one is AIDS, and the third one is stigma, discrimination, and denial. He foresaw that stigma, discrimination, and denial would become as serious problems as the disease itself.
Key populations such as men who have sex with men, transgender people, intravenous drug users, and sex workers often face stigma and discrimination in addition to those associated with HIV. Race, gender, economic status, and other health problems, such as living with tuberculosis or disability, can exacerbate and deepen the stigma experienced by PLHIV. The reason for stigma and discrimination against PLHIV is a misconception about the transmission of the disease, a lack of knowledge and accurate information about HIV, fears of its incurability, etc. This creates fear, which leads to stigmatization.
Consequences of stigma
Despite the widespread recognition of the consequences of stigma towards PLHIV, it continues to be an obstacle to HIV prevention and treatment. For many years, experts, researchers and PLHIV have cited stigma and discrimination as the main vehical of the HIV epidemic.
Stigma has a detrimental effect on the health of PLHIV. A review of 64 scientific studies showed a significant connection between stigma and high rates of depression, low social support, and reduced adherence to antiretroviral therapy (ART), as well as access to health and social services and using it. There is also a connection between stigma and anxiety because of HIV, quality of life, physical health, emotional and mental health problems, and sexual risk practices.
In our opinion, the discovery of a remedy against HIV will help reduce stigma towards PLHIV. Sooner or later, such a remedy will be invented.
Stigma in Ukraine
Stigma in Ukraine is quite common in all spheres of life, from the social environment to government agencies. And it is especially sad that it still can be observed in the healthcare sector. You have probably noticed the manifestation of stigma.
To understand the extent of stigma in Ukraine, we will refer to a special tool called the Stigma Index of People Living with HIV. It represents a data collection survey on the stigma impact and discrimination on the lives of PLHIV. For the first time, the Stigma Index was launched in 2008, and since its launch, it has been implemented in more than 100 countries.
The latest survey of 2020 is the fourth wave of surveys “Stigma Index of People Living with HIV 2.0 Ukraine” (previous surveys were made in 2010, 2013, 2016).
It analyzes the stigmatization of PLHIV in Ukraine, including key groups, in various spheres of life: health care, relations with the social environment, employment, as well as manifestations of self-stigmatization, self-discrimination, respect of confidentiality about HIV status, etc.
The results of the study indicate a gradual improvement in the situation regarding the observance of the rights of PLHIV in Ukraine, but the problem of stigma and discrimination based on HIV status is still urgent. The problem of self-stigmatization of PLHIV is very acute, as well as double stigmatization of PLHIV, who belong to key groups.
Some data from the study:
11% of respondents reported stigma and discrimination in the past year from the social environment (decrease compared to previous surveys)
58% of respondents noted that over the past year they have felt the negative impact of HIV status on at least one aspect of their life
17% of PLHIV faced different form of stigmatization and discrimination from healthcare workers
there is a decrease in cases of disclosure of HIV status by healthcare workers without patients’ consent – from 30% in 2010 to 6% in 2020
the number of PLHIV who voluntarily passed HIV testing increased from 69% in 2010 to 77% in 2020
two thirds (68%) of those surveyed (except those who were born with HIV) postponed HIV treatment after receiving a positive test result, of which 74% did so because of a possible disclosure of their status
47% of respondents have interrupted HIV treatment at least once.
almost a fifth (17%) have never received antiretroviral therapy (ART)
26% of respondents among those who started receiveing ART did so more than 2 years after diagnosis
in the 12 months preceding the survey, 28% of PLHIV who have ever started ART have stopped taking therapy
16% of PLHIV reported that they are not currently monitored or on ART
14% of PLHIV involved in ART faced stigma from the staff of the medical facility where they receive HIV treatment
More information on the latest data on stigma in Ukraine (2020) can be found in the report “Index of Stigma of People Living with HIV 2.0 Ukraine”.
Your personal contribution to overcoming stigma
Stigma is a social process ingrained in a community at the individual, interpersonal, organizational, social, and institutional levels. Reducing the stigma towards PLHIV will lead to a reduction in HIV infection, the provision of adequate medical care and social support to PLHIV, and a decrease in fears about HIV status.
The most comprehensive programs to reduce stigma towards PLHIV and other key populations are presented by UNAIDS 2020 program – Evidence on Eliminating HIV Stigma and Discrimination (Country Guide to Implementing Effective Programs to Eliminate HIV Stigma and Discrimination in six areas), and many other documents.
But the fight against stigma is not only a state task but also the personal participation of everyone who is not indifferent to the problem. If you are well aware of the ways of HIV transmission and its prevention, you can dispel myths about HIV, you know about PLHIV’s life and therapy:
raise awareness level of HIV issue in your environment
share links to online resources that describe the problem and have scientifically proven information about HIV transmission and therapy
express your support for PLHIV
Make your personal contribution to overcoming stigma, let us together make our society tolerant and aware! Awareness is the best protection against HIV/AIDS!
Eduard Yefimenko