Partners in Kyrgyzstan Unite Against HIV Stigma and Discrimination
By Galina Solodunova
Osh, Kyrgyzstan, 28-29 October - Representatives of the Government and of the local authorities, women living with HIV, mothers of children living with HIV, NGOs, doctors, teachers, civil servants and donors met to finalize a common strategy against HIV related stigma and discrimination. Osh Province is the site of a recent outbreak of HIV infection among children in hospitals and has the highest rates of HIV infection among children and women in the Kyrgyz Republic.
The roundtable showed that stigma and discrimination was a new issue for many members of the community but not for doctors.
After the outbreak, the gap between doctors and mothers of children living with HIV seemed vast. Any attempts to reconcile them ended in fighting and scolding. Numerous legal cases were filed. Instead of taking care of their children, mothers just wanted to bring more and more people before the courts. Stigma and discrimination grew in hospitals and in the community.
One of the roundtable participants Damira Imanalieva, researcher and representative of the “Kosh Karash” NGO has been working in the field of HIV for twenty years, first as doctor, then as a social worker. She recollected, “I remember that at the beginning women did not want to see anybody. They were afraid to meet in their native villages. I remember a woman who came with a child in very poor health. As a doctor, I insisted that she should bring the child to the hospital, but she did not even want to hear about doctors. She kept saying ‘…never, never, never. They have already infected him.’ When we managed to bring two or more women together, the only thing that they did was cry and talk about their problems.”
However, recent qualitative research which has been presented on the first day of the roundtable showed that doctors had managed to build trust among women living with HIV and were the only ones who significantly reduced stigma and discrimination.
UNICEF’s support to special trainings aimed at improving health care services to women, including those living with HIV, was one of the building blocks used to recover trust. In all the trainings supported by UNICEF, stigma and discrimination related issues were included. Dilnuza M. participated in many of the trainings. She did not identify her status at the beginning but at the end of the trainings she told her story: “When I was in labour, doctors were standing behind the glass door and trying to instruct me about what to do. They did not come to me because they were afraid of contracting HIV from me.” Sometimes Dilnuza M. cannot fight back her tears, and at other times she is the only person in the room who does not cry. There is not a single sign of reproach or censure in her look. She smiles, with a strong belief that those times have passed and now everything is different. Dilnuza M. participates in trainings for doctors because she sees how important it is for them. “We always invite people living with HIV to such trainings” says Cholpon Imanalieva, UNICEF Health and Nutrition Specialist, “they help medical doctors better understand the issue of stigma and discrimination.”
At the roundtable Dilnuza M. was one of the most active participants. She is one of few women who has managed to disclose her status and the status of her child to her husband and parents-in-law. She described the situation in affected families, “It took me quite a long time before I did this [disclosed her status]. In my community it is considered that a daughter-in-law is not a close member of the family. If she does something wrong, the family just turn her out of the house. I was afraid of that. But luckily they understood everything. I now feel a great relief and don’t live in constant fear. Still most of the women who live with HIV or have children with HIV are afraid to tell anybody about their situation. There have been several cases when the disclosure of the status of children brought young families to divorce. Some children were excluded from kindergartens without any explanation.”
Moreover, women fear people will think the worst of them. “I know that because before I learned about my status, I myself had thought that only bad people – prostitutes or drug-users - could have HIV” – said Gulnara S, a school teacher. Self-stigmatization is particularly strong among affected women in Osh.
The roundtable discussion also revealed some recent improvements. In less than three years the situation in the area of health services for women and children living with HIV has changed dramatically. Doctors have turned from enemies to friends – the only friends in many cases. Gulbarchin T. from a village in Osh Province shared, “It is really a big difference now. I don’t have to go to Osh city to get treatment if I feel sick. I go to the local polyclinic and can discuss everything with my local doctor, just like other people. We have a great pediatrician also. She takes care of my child. This winter she saved her life many times. We started to take anti-retroviral drugs and her health has improved. She [the child] can walk now.”
Gulbarchin T. shares her problems with her doctor and regularly meets with other mothers of such children. They discuss how they will disclose their status to their children, some of whom will soon go to school and how they will explain to their small children why they take medicine every day. They don’t have time to cry over their problems anymore. They need to discuss solutions. They also take this opportunity to relax from constant fear, to joke and dream about the future.
Damira Imanalieva was convinced that women are much stronger now. “Very often now I hear from the women that they believe that God gave them these difficulties to make them stronger.” In the recent tragic events this summer when violence swept through the south of Kyrgyzstan, many of them demonstrated enormous strength. Dilnuza said: “When our community was blocked and the streets were full of snipers killing everybody who went out and many houses were burning, we had nothing to eat at home, and my brother with a great risk to his life managed to come to us and brought two loaves of bread. He said that we should not let my daughter suffer after what had happened to her. Then at night, a doctor from the “AIDS” Centre came and she brought us medicine because anti-retroviral therapy should not be interrupted.”
There are many other signs of stigma abating in the communities. But, there are still problems, myths and fears which have a detrimental impact on the lives of people living with HIV as well the community as a whole. All of these issues were discussed in detail during the roundtable on stigma and discrimination and will soon be addressed through programme activities in Osh Province. The experience will be used to develop similar approaches nation-wide. The participants strongly believe that being united by one common strategy, they will make stigma and discrimination a thing of the past in their community.
The names of the women living with HIV have been changed.