PLOT “You have AIDS, are you going to give birth?”: How Ukraine is fighting HIV-related stereotypes

This year marks 40 years since the first official report of the first HIV case in the world. 32 million people have fallen victim to the disease in the history of the global epidemic. Today antiretroviral therapy allows people with HIV to live a fulfilling life: to start a family, to give birth and live as long as everyone else. HIV is no longer a sentence, but people with this status still suffer from discrimination.

The story of Vera

“I was told then: if you live for five years, it will be fine. I don’t know where they got this figure from. They were afraid of me, they didn’t let me into the office, they offered to stop at the doorway. Someone wrapped a piece of paper after me. They did not want to have my teeth treated and this led to complications. Dentists sent trainees in some kind of “spacesuits” who pulled out my tooth with shaking hands with some old instruments. They didn’t want to give birth in my town, because the word “AIDS” was written on my medical card in big red letters ”.

Photo of the national network “Positive Women”. Vera Varyga, national network “Positive Women”

Vera Varyga , a board member and head of access to services at the Positive Women charitable organization, and the leader of the first self-help group for HIV-positive women, tells her story . Today the girl is openly living with HIV, but 20 years ago it was a death sentence. I found out about my status by chance, like many women – while being tested during pregnancy.

Very often women find out about their status during pregnancy.

“Very often women find out about their status during pregnancy. Our culture of testing is still very low. People think: what do I have to do with the HIV test? I did not use drugs (although if people do, it certainly doubles the risk) and I was not a sex worker. All these stereotypes that still hang on people living with HIV are ingrained in society and really are a barrier to testing, ”says Vera.

According to her, then the doctors were completely unprepared for adequate communication, did not possess any information, reproached: “You have AIDS, and you are going to give birth.” Although now, after 20 years, according to the results of research conducted by the Positive Women organization, HIV-positive women experience the most discrimination from doctors, they account for almost 50 percent in the corresponding rating. They are followed among the condemning ones: the woman’s entourage (more than 25 percent), then family members (almost 17 percent), a partner (12 percent), and only then representatives of law enforcement agencies (9 percent). It turns out that a woman who has learned about her HIV status often does not have support among those closest to her and those who should provide the first, both physical and psychological assistance.

Living with HIV is particularly difficult for women

“Women are more vulnerable to HIV. Since the 2000s, the female epidemic has grown. This was influenced by a biological factor, the woman is the host in sexual relations, she is more vulnerable to infection. Also, girls are more worried about the news about their status, they are very worried about whether they can start a family, give birth to healthy children.

Often HIV status becomes a pretext for violence against women

Often, HIV status becomes a pretext for violence against women: both direct (moreover, rapists justify their actions precisely by the HIV-positive status of the victim), and it is a method of achieving the goals of the offender through blackmail (threats to tell about the status in school or kindergarten, take away from mothers of children). 75 percent of women never asked for help, did not believe that they could be helped, our society is still not tolerant enough and lives by stereotypes, ”says Vera Varyga.

Istanbul Convention

“We took part in the action near the president’s office to again raise the issue of ratifying the Istanbul Convention, which Ukraine signed but did not accept. This only exacerbates gender inequality and violence, and women living with HIV are especially vulnerable, ”says Positive Women activist.

I was told then: if you live for five years, it will be fine. I don’t know where they got this exact figure from.

The Istanbul Convention of the Council of Europe on Preventing and Combating Violence against Women and Domestic Violence has been signed by 46 countries and the European Union. It is the first legally binding instrument to create a legal framework aimed at preventing domestic violence, protecting victims and prosecuting perpetrators.

Most new HIV infections among young people are in girls

47% of identified HIV-positive people are women, and in the age group from 14 to 25 years old, 75% are girls. “It is very important to pay attention to sex education,” Vera said. – If it happened that a person found out about his status, it is imperative to explain that it is necessary to take antiretroviral therapy, since often adolescents are unconscious of this. It is important for them to know that this will allow them to lead a fulfilling life. ” Information fakes – sites and forums of “AIDS dissidents” – make a negative contribution. When a person is not yet ready to accept his status, such information has a particularly destructive effect.

“Positive women”

Of the 250 thousand people living with HIV in Ukraine, according to UNAIDS, almost half are women, although initially the proportion was different, there were significantly fewer women.

At one time, to look at life differently, to gain self-confidence and an understanding that HIV is not a sentence, Vera was helped by the support of those who had already gone her way. After that, the girl decided that she would certainly become a volunteer in order to help other women to fully live with their status, as she herself does. Now Vera has a wonderful family, a husband and two healthy sons. She is a board member of the Positive Women charitable organization and the leader of the Kiyanka + self-help group for HIV-positive women.

The National Network “Positive Women” provides comprehensive support to women with HIV-positive status: from collecting needs, conducting research, developing recommendations, advocating for rights – to direct support. Representatives of the organization work in all regions, are members of state committees, and have long sought a presence in the national council on counteracting HIV and tuberculosis under the Cabinet of Ministers.

“Women’s health is not only about HIV treatment itself as a fact. Access to a variety of treatment regimens is important. In adolescents, hormonal levels differ from older women. It is important to develop new protocols, take into account the WHO recommendations. Make sexual and reproductive health services available. Mental health is equally important. It has become especially difficult in the realities of the COVID-19 pandemic , which affects the increase in the number of depression, panic attacks, fear and insecurity, ”says Vera.

About global goals

The global goals of the Joint United Nations Program on HIV / AIDS (UNAIDS), which Ukraine has set itself as a political commitment for 2020, were called “90-90-90”. This means: 90 percent of people living with HIV should be aware of their status, 90 percent of those – receiving appropriate treatment and 90 percent of those receiving therapy – should have a so-called “undetectable viral load” (this means that the treatment works effectively for the person, and he/she cannot transmit the virus further).

“Unfortunately, Ukraine has achieved the desired results only on the last point. We were unable to provide the first “90” due to the lack of a culture of testing in society, which is still at a low level, including due to a bias towards the topic of HIV. People do not want to know about their status, and many cannot imagine at all how HIV can relate to them. There is a stereotypical attitude to the problem that only drug users and women who provide sex services can have this status. Although, HIV transmission has long gone beyond these categories of the population and can affect absolutely everyone. Of the next “90” who are already aware of their problem, many in Ukraine simply do not accept treatment for various reasons. And only the third “90”, those who know about the status and receive treatment, Anton Basenko , Programme Manager of the European AIDS Treatment Group (EATG) (one of the oldest organizations that represents the interests of 2.3 million people living with HIV in the WHO European Region, which includes Ukraine).

People do not want to know about their status, and many cannot imagine at all how HIV can relate to them.

Anton’s personal story is also connected with this problem: he has come a long way, from a teenager from a prosperous family, who, due to his young age and curiosity, began to “experiment” with psychoactive substances, to problem drug dependence. Today Anton coordinates the organization’s programme in Brussels, which concerns the quality of life of people living with HIV.

By 2030, the world plans to eradicate deaths from HIV / AIDS

Today, the international community is already setting new goals – “95-95-95”, which Ukraine, among other things, should achieve by 2025. And by 2030, the world plans to completely eradicate, if not HIV infection, then at least AIDS deaths.

People must stop dying of AIDS!

“People must stop dying of AIDS! Today science is at the stage of inventing an HIV vaccine. Several companies publicly state that they have already successfully conducted research on primates. Drugs against HIV are also being improved, Western pharmaceutical companies are developing new drugs that, instead of daily administration, make it possible to take therapy once a week or even do subcutaneous injections with an implant once a month. Also, no one loses hope for the invention of a drug that would completely cure HIV infection,” hopes Anton Basenko.

At the same time, he states that many of the modern drugs are not available to Ukrainians. Outdated treatment protocols are often used in the country. Also, often in addition to the very fact of prescribing antiretroviral therapy, other aspects of the patient’s life, concomitant diseases (hepatitis C, tuberculosis) are not controlled by doctors.

But even this is not the main problem for people with HIV status in Ukraine. According to Anton, the worst is public censure. Today, Ukraine and other countries have made a commitment to eradicate this stereotype and by 2030 reduce bias towards the topic of HIV to zero.

HIV test for everyone – twice a year

“I have a child in my arms. I would like to draw your attention to the younger generation, – says Anton. – Children grow up and at some point become teenagers. And today, in the age of progressive technology, when such things as psychoactive substances, experiments of a sexual nature, can begin very early. This dramatically increases the risk of being infected with HIV. ”

Anton gives his parents some simple but effective advice: build trusting relationships with children, talk to them more often, take an interest in their life, let them know that no matter what, they can address any problem. And the main recommendation is for everyone to be tested for HIV twice a year. And even if this problem arises, do not worry, because treatment is available today, and HIV is not a sentence for a long time.

The original version of the article is in Russian and can be accessed here.