HIV status: challenges that women face

July 11, 2024
a person wearing a blue shirt
Photo: UNDP Kazakhstan

Elena Rastokina is the founder and head of the public foundation "Answer." Over 15 years ago, she discovered she was HIV-positive. She has two healthy children and is now open about her status, advocating for women's access to specialized social services.

Elena focuses on gender issues in her work, often discussing the challenges faced by women living with HIV, drug users, and women who have been released from prison.

“It’s even harder for women to find jobs because they are perceived differently. For example, 'teacher' and 'cleaner' are seen as female professions, while 'director,' 'coordinator,' and 'manager' are viewed as male roles. This reflects the prejudices against women. They are often excluded from decision-making positions and usually hold lower roles, which means they earn less,” Elena points out.

Currently, the "Answer" foundation is running several projects aimed at providing comprehensive support for women. According to Elena, many women don't know how to seek help from the state, approach employment centers, or start a business and get funding for it.

“The more overlapping social roles a woman has (for example, if she uses drugs, has HIV, or has been released from prison), the more complicated her situation becomes. I know women with these issues who didn’t pursue education for a long time because they feared their status would prevent them from getting hired,” Elena explains.

Currently, women with HIV cannot access crisis centers. The support provided by the state to the most vulnerable populations is unavailable to them. If a woman with HIV needs a personal assistant or social worker due to illness or disability, the state doesn’t provide one.

a group of people sitting at a table with a laptop
Photo: UNDP Kazakhstan

Elena also highlights that many Kazakh women lack basic financial literacy. They often have no income of their own and rely entirely on men. 

We need courses to improve financial and legal literacy. There are many social programs in our country to support women, and employment centers help them find jobs. However, many women are unaware of these resources,” says Elena.

Housing is another critical issue. Elena stresses the need to open access to state shelters for women from vulnerable groups. In Kazakhstan, there are shelters for women who have suffered domestic violence, but what about those who haven’t experienced violence and have nowhere to go?

“During the COVID-19 pandemic, I was shocked by the number of women having to sleep on the streets and on benches. They had nowhere to go. They lost their jobs and were evicted from their rented apartments. Some were even with children. Where are they supposed to live? These women didn’t look like criminals or drug users; they just had nowhere to go,” Elena recalls.

Another issue for women with HIV is self-stigmatization. According to Elena, Kazakh women with HIV-positive status fear being rejected by society and their loved ones, repeatedly facing the moment when they have to disclose their status. These women often struggle to engage with psychologists.

“It’s terrifying to tell someone about your diagnosis. When you meet someone new, you have to go through it all over again. You have to relive the moment when they either accept or reject you, when they either turn away or say, 'It’s okay.' There's always shame, fear of loneliness, and low self-esteem,”
Elena explains.

Elena draws attention to the problem of stigma and prejudice, which is directly related to Article 118, paragraph 1 of the Criminal Code of the Republic of Kazakhstan, “Knowingly putting another person at risk of HIV infection.” It has long been known that a person with HIV who is on regular ART (antiretroviral therapy) cannot transmit the virus. Such individuals are safe for society. However, few people in Kazakhstan are aware of this fact, and prejudices about HIV are widespread.

“Our legislation lags behind science. Science has known this for ten years, but the law still talks about the danger of infection. When someone learns they have HIV, they sign the relevant documents and are 'under the article' from that moment on. They feel like criminals. If it is known that one person is registered and another is not, it means the former has put the latter at risk of infection. We have a clause in the article stating that if you inform about your diagnosis, you are not guilty. But it doesn’t specify how to properly disclose your HIV status. This means you either need to go to a notary and certify a receipt or go to an AIDS center and say, 'Look, this is my partner. Sign that you are aware,' and only then proceed,” Elena explains.

In Elena’s opinion, the article should be removed, but responsibility should remain because HIV infection can be considered under articles of the Criminal Code, such as 'causing moderate harm to health' or 'causing grievous bodily harm.' This way, women who were intentionally infected would not be afraid to report to the police—they would feel less ashamed and scared.

Statistics show that women with HIV are more open about their status than men. More women live openly with their diagnosis. Elena suggests that men are more afraid of rejection, which is why they are more likely to hide their HIV-positive status.

Elena is also concerned about the situation with young people. She explained that new-generation psychoactive drugs increase libido and heighten paranoia. Because young people who use these drugs are constantly in a state of panic, it’s hard to detect them, enter their group, and test them for HIV.

“I think the methods for working with drug users will change drastically soon. With other groups, we could enter the group, provide them with syringes to prevent HIV transmission through shared needles, and persuade them to get tested. But with today’s youth, it’s much more difficult. It’s hard to control the situation within these groups,” Elena explains.

HIV remains a major global public health issue. Today, more than 32,000 people in Kazakhstan live with HIV. About 2,300 of them are registered in the capital, Astana.

Modern medicine has developed effective ways to prevent, diagnose, and treat HIV. Today, HIV has become a manageable chronic disease. By taking ART, people with HIV can live long and healthy lives.

***

The United Nations Development Programme (UNDP) implements the SCALE initiative to promote progress towards Global 10-10-10 HIV Targets by expanding proven and evidence-based key approaches and strategies.

A key component of SCALE is the "Law and Access" grant program. These grants are investments in enhancing the capacity of local organizations that are well aware of their communities' needs. Over the past two years, eight organizations in Kazakhstan, Kyrgyzstan, Tajikistan, and Ukraine have received grants through SCALE. Two of these grants are implemented in Kazakhstan.

The SCALE project is implemented in collaboration with the Ministry of Labor and Social Protection of the Republic of Kazakhstan. A national training for trainers was conducted for staff of centers providing specialized social services. A national trainer was selected during the event to train specialists from similar centers in the regions.

The mission of the "Answer" public foundation is to remove barriers in Order No. 230 of the Ministry of Labor and Social Protection of the Republic of Kazakhstan so that women living with HIV can access crisis centers, and people living with HIV and people with disabilities can access services from personal assistants and specialized social institutions.