Imagine a world where you are feared and avoided because of your diagnosis — a world where you are turned down for a job, health care, or even love. In Tajikistan, 94% of people hide their HIV status because of discrimination in society and even within their families.

In migration, Yasmina was transfused with HIV-infected blood

Yasmin (name has been changed), a seasonal migrant, was 35 years old when she was involved in a car accident in Russia. For three days she was unconscious and lost 800 milliliters of blood. As she had no insurance, she received blood transfusions from unknown individuals.

“I noticed a medical card on the table, it was stamped with a big red ‘HIV’ stamp – and next to my year of birth,” recalls Yasmina. “Later, on the same card, I noticed my last name. I couldn't believe it! In my head, HIV was a disease of sex workers and drug users, but I wasn't one of those. Everything was broken inside me, it was like my life was over.”

People living with HIV often face stigmatisation from medical workers. For example, instead of offering Yasmina existing effective treatment, they told her that she would die soon:

“At the blood centre, I was directed to my nurse, who started asking questions: “Do you have children...? And do you know that you are going to die soon and your children will become orphans?” This question drove me to hysterics. “No, I don't have the right to die. My kids will be alone without me,” – says Yasmina.

Currently, she suffers from uterine fibroid, — it's a benign tumor that can be treated only by surgery. But because of her positive HIV status, doctors transfer the responsibility to each other and refuse to take care of her. Doctors hint to her that no matter where she goes, she will not be accepted.

“Some people said straight out that I will die under anaesthesia,” – Yasmina says.

What kinds of discrimination exists

Discrimination comes in many forms: race, gender, age, and religion. Understanding these types of discrimination helps to fight injustice.

There is also direct discrimination – when a person comes to the doctor and they refuse to accept him after finding out about his status.

An example of indirect discrimination is labour restrictions when an employer requires HIV tests and medical examinations upon employment.

According to the Labor Code of the Republic of Tajikistan, an HIV test is required only for medical workers who work with blood.

According to Larisa Aleksandrova, a lawyer, HIV and human rights expert, this attitude makes it difficult for people living with HIV (PLHIV) to find employment:

“This forces people with HIV to refuse such jobs for fear of disclosure of status and employer's reaction. And it violates their right to work, which affects their right to live with dignity and health.”

Fear of being judged and labelled forces people with HIV to hide their status, refuse to participate in social activities and limit their social circle. It leads to loneliness, depression and social isolation – negatively affecting their mental and physical health.

Surveys of people with HIV show that 7 out of 10 HIV-positive people in Tajikistan feel ashamed of their status – it is a manifestation of internal stigmatisation. As a result of external pressure, people label themselves with stereotypes and feel “dirty”, “guilty” and “devalued”. According to the results of the study “Stigma Indicator of People Living with HIV”, conducted in Tajikistan in 2021. This study involved 1,100 PLHIV from all regions of the country.

People living with HIV may face discrimination for multiple reasons, for example, a woman with a disability who is HIV-positive may be discriminated against because of her gender, disability and age at the same time. Discrimination can also be multiple – when a person faces discrimination because of their race, gender, or status in different places, at work, education, or when socializing with people.

Tajikistan's new law “On Equality and Elimination of All Forms of Discrimination” penalizes any manifestation of discrimination.

If you are HIV-positive and face discrimination and stigmatisation, please be aware that there is support available. The NGO SPIN Plus offers free psychological and legal assistance. You will find support here and learn how to protect your rights. There are other organisations in Tajikistan supporting HIV-positive people, some of them are listed in the table below.

---

Stigmatisation begins with the family

Yasmina cooks delicious food but is separated from the kitchen because of the stereotype that HIV is transmitted through household appliances – sharing utensils or through airborne droplets.

“I will never forget when I cut my finger while cooking meat, I had time to bandage it, but my mother took and poured the whole pot into the irrigation canal and said: “You're not cooking anymore.” I was separated from the bathroom. I used to bathe behind the house, winter and summer. The washing machine was closed to me. My mom isolated me from my children for five months. Those were the moments when I didn't want to live”, – Yasmina painfully recalls.

She shares: “Whenever I got sick, I was afraid to call an ambulance and go to the doctor. I was scared of discrimination after my status was revealed, but mostly I was afraid for my children's reputation.

Maria Goncharova, a psychiatrist and assistant at the Department of Neurology, Psychiatry and Medical Psychology, says that living with HIV is frequently associated with stigmatisation and social isolation, which seriously affect mental and physical health. Maria identifies several reasons why it is important not to stigmatise people living with HIV:

“People with HIV are not guilty of their disease and don't deserve to be treated any other way. Stigmatisation can make them avoid testing and treatment, which leads to later detection of the disease and serious health complications. Open discussion about HIV helps people learn how to protect themselves from infection. In addition, support for people living with HIV is very important. This will help them to get proper treatment and prevent the spread of the virus.”

Yasmina's life would take a different turn if it weren't for a chance encounter with a man who is also living with HIV. This man has been in a discordant marriage for many years, which means that his spouse is living without HIV and he has an undetectable viral load due to taking antiretroviral therapy. Antiretroviral therapy is the treatment of HIV infection by taking several antiviral drugs. However, they managed to have a healthy child.

He inspired her to look at her status differently and showed her that it was possible to lead a fulfilling life and to achieve success. As a result of this encounter, Yasmina was able to love herself for who she is and even find a job.

“Through his example, I was able to believe in myself and my strength. He invited me to work in their organisation with people like me. And it helped me not only to accept my status but also to realise that my mission in life is to help people.”

Now Yasmina is 47, all her family and neighbours know about her status and treat her with respect because she was able to find herself in her work despite all the difficulties. She realises that everything her family did back then was because of low awareness of HIV. Yasmina's goal is to save as many lives as possible and help those who need support.

It is important to realise that discrimination against people with HIV is unfair. People with HIV are not to blame for their disease and deserve the same respect as everyone else. Including and supporting people with HIV helps to create a society where everyone feels accepted and respected, irrespective of their status.

This publication was prepared by the International Organization for Migration in Tajikistan in partnership with the Tajikistan Branch of the international organization "Centers for International Programs, Inc." (ICAP) with the financial support of the Swiss Agency for Development and Cooperation (SDC). The content of the publication is the responsibility of the author and does not necessarily reflect the views of SDC.