Yulia Como from AFEW International on the self-stigma of HIV-positive women in Eastern Europe and Central Asia and on the '"#SeeWhatMatters" campaign

AFEW International of the Netherlands recently conducted a campaign called "#SeeWhatMatters" about the stigma and self-stigma of HIV-positive women in Eastern Europe and Central Asia.

According to the results, women in these regions continue to face HIV-related stigma from society, health care providers, and even their families.

On the eve of the World AIDS Memorial Day on May 21st, Media Loft correspondent Katya Kobenok talked to the campaign's representative Yulia Komo about how the project was created, how it was affected by the Russian invasion of Ukraine and how the organisation is now helping HIV-positive Ukrainian women in Europe.

Yulia Komo

Two short videos, which are animated, have been posted on the campaign's website. They are based on real stories of women living with HIV. The videos are developed and made in close cooperation with HIV-positive activists from different countries of the region, using their direct quotes, pictures of their eyes and the sound of their voices. And all of them ask us to look beyond the stigma of the diagnosis of a human being - alive, strong, striving for happiness, just like everyone else.

AFEW also conducted a study that shows that in 2022 alone, 42.1 percent of participating women in Kazakhstan, Kyrgyzstan, Russia, Uzbekistan and Ukraine experienced stigma.

An Emotional Strategy

The project itself was conceived back in the Autumn of 2021, but confirmation from the sponsors did not come until March 2022. Due to the dramatically changing situation in the region, the project had to be heavily reworked and in fact it did not get started until June-July 2022.

"The need to reduce stigma and discrimination against women, especially in our region, is very high," says Yulia.

The project itself involved working with both general stigma and the internal stigma of women themselves (self-stigma). In addition to the company, the project included individual work and group training with the interviewed women.

"The main message of the campaign is to see a woman with HIV not as her diagnosis, but first of all as an ordinary person, with her fears, desires, dreams. We wanted to show her emotions, experiences and successes. The diagnosis is not the main thing, the main thing is who you are and how you build the world around you," explains Yulia.

Yulia said that the clips, which were produced by AFEW, resonated with many HIV-positive women and professionals who work with HIV issues.

According to AFEW's research, nearly 80% of women experienced various types of stigma and discrimination when seeking help at medical institutions.

According to the surveys, one in two women has encountered rude or biassed attitudes on the part of medical professionals. More than one-third of those surveyed reported being denied medical care because of their HIV-positive status.

The study also found that one in four women encountered discrimination at work, and one-third of those surveyed spoke of problems in the family after they told their loved ones about their diagnosis. Other members of the family were forbidden to  share dishes, and many were physically and psychologically abused. One third of all women who found out about their status considered suicide.

Yulia says that HIV-positive women often face misunderstanding in schools and kindergartens:

"If it is suddenly revealed somehow that the child's mother is HIV-positive, even if the child themself is not HIV-positive, there is still great fear. They ask that   the child be removed from school, from social circles and so on, without going into the heart of the problem."

Some people still do not understand that HIV is transmitted in a very limited number of ways, Yulia explains:

"Moreover, with regular therapy, the viral load is reduced so much that the virus is not transmitted. And very many women with HIV - and even couples with HIV - with appropriate therapy can have healthy children. And most importantly - and these are the basics that everyone should know - HIV is not transmitted through kissing, shaking hands, or sharing utensils."

Yulia explains that the "#SeeWhatMatters" campaign aims to change society's attitudes toward people living with HIV:

"We hope this campaign will contribute, so that people with HIV, and in particular women with HIV, will stop being discriminated against, feared, dismissed and demanded to take their children out of kindergarten or school."

Videoclips in national languages

In 2022, AFEW had to close its office in Russia. However, AFEW experts still managed to do some research in Russia for the project.

"Unfortunately, the project in Russia had to close. "Unfortunately" - because the HIV problem in Russia is still huge and the situation is getting worse," says Yulia.

Before the war, the authors of the "#SeeWhatMatters" project thought about creating it only in Russian and English.

"With the start of the war we had to revise the campaign. Even before the war, we wanted to produce all the material in Russian, which is understood throughout the region, and duplicate it in English. However, with the start of the war, it became clear that for Ukraine we would develop all campaign products, texts, a website page, videos and even a translation of the study in Ukrainian. And then we created full-fledged products in all the national languages of the other countries participating in the project - Kazakh, Kyrgyz and Uzbek. This required additional expenses, including time, but it was well worth it!" - Yulia is convinced.

HIV-positive people lost their peace of mind

Yulia says there are still many fears and myths about the virus, but in general there is no longer the kind of hysteria about HIV in society that existed in the early 2000s:

"At that time, HIV was perceived as some kind of curse - the level of discrimination was off the scale.

Over the past 20 years, many legislative measures aimed at supporting HIV-positive people have been adopted in the regions of Eastern Europe and Central Asia. Many modern therapies and registration mechanisms have appeared. In addition to medical treatment, HIV-positive people began to receive psychological support.

But when the war started in Ukraine, this tragedy had a major impact on the fate of HIV-positive people in the region. Millions of Ukrainians were forced to leave their homes, flee from the bombing and shelling. HIV-positive people were among them. And anyone on regular medication knows that any movement, especially forced movement, affects their health, Yulia explains.

"All the strength and resources that have been thrown into the fight against HIV are now weakened. A huge number of people who have been forced to flee Ukraine can't get access to medication in a timely manner. In the new countries they have to go through certain procedures again in order to be registered."

Fear of stigma is not going anywhere

Although AFEW works with  Eastern European and Central Asian regions, there is also a separate office in the Netherlands. Since the invasion of Ukraine, many of its citizens have moved here. Now, AFEW helps HIV-positive women to adjust to the new reality.

In the Netherlands, there is a certain mechanism,HIV-positive people need to go through certain steps to regularly receive therapy. However, Yulia notes that many Ukrainian refugees in the Netherlands are afraid to seek help because of self-stigma:

"Refugees who have contacted us anonymously asking for help say they are not getting the therapy they require. But they don't want to reveal their HIV status in reception organisations, refugee hotels, and host families for fear of stigma."

In the Netherlands itself, there is a lot of information aimed at combating stigma against HIV. Other European countries also have a relaxed attitude toward HIV-positive people, Yulia says.

"I have not heard of any cases where the Dutch have asked someone to leave [a host home or hotel] after learning that a person has HIV. On the contrary, they helped, because many understand that the sooner a person gets registered and receives appropriate therapy, the better for everyone - both for the person and those around them."

However, fears are very strong among Ukrainian refugees themselves.

"There was such a case - we found out along with several other organisations- that one girl with HIV in one of the hotels had her HIV status disclosed. Other Ukrainians demanded that she move out, they were frightened. This girl was supported and they found another place for her, but it confirmed our assumptions that we need to pay attention to this aspect of refugee integration as well," says Yulia.

That is why AFEW conducts public information work among Ukrainian refugees to reduce fears and dispel myths about HIV.

Yulia adds that the war has increased the burden on health care systems in all countries of the region:

"Again, the same problems of access to therapy. In this respect the war has had an impact not only on people with HIV in Ukraine and Russia, but also on all the neighbouring countries. Medical health systems are now overwhelmed."

In March 2022, UN Special Envoy for HIV/AIDS in Eastern Europe and Central Asia Michel Kazatchkine recalled that Russia's annexation of Crimea and the conflict in the Donetsk and Lugansk regions of eastern Ukraine in 2014 had significantly undermined the provision of medication needed by HIV-positive people. And with Russia's full-scale invasion of Ukraine, the problems associated with ensuring access to medication for people living with HIV have only worsened, he added.

In December 2022, the UN released a report which indicated that Russia has the highest percentage of HIV infections in Europe. There are 40 cases per 100,000 people.

Russia is followed by Ukraine, Moldova, Kazakhstan and Belarus.

By: Katya Kobenok

Photos: from the personal archive of Yulia Komo