Ravshan Madjipov, director of the NGO “Plus Center Osh”, tells us in an interview about the work conducted with children living with HIV under the UNDP/ Global Fund Project. Most of these children were infected in their early childhood in hospitals.
What work does your NGO carry out with children living with HIV?
For us the priority is health, and especially the health of these children. We give a lot of attention to treatment adherence. ART (antiretroviral treatment for HIV) treatment needs to be taken every day. The environment around these children plays an important role in this, so we work with their parents so that they become responsible and understand the importance of taking treatment.
Together with doctors, we monitor children’s health and visit some of the patients at their home to understand the atmosphere and situation which can influence their intake of pills. When necessary, we accompany children to medical consultations.
We also work on decreasing stigma and discrimination, because these children go to school and communicate with their classmates. Our goal is to make their lives meaningful. We consider it’s important that they have a good self-esteem and that they know they are worthy of everything, which is not always the case if they suffer from self-stigmatization.
Together with the UNDP and the AIDS Center in Osh, we organize a summer camp for children to help them disclose their status, confront psychological barriers and receive HIV education on different themes.
I want to mention the work done by different donors and projects, including the organization of peer support groups for children living with HIV in Osh and other districts of the region. We also get a lot of help from the psychologist of the AIDS center, Dior Ahmedjanov.
Our project, together with the UNDP / Global Fund, also provides financial motivational support to children and their families.
Why do you consider it’s important to help these children?
It improves the quality of their lives, helps them adapt to society, to classmates. Now treatment adherence is what matters the most, then having a healthy and complete family, having children, studying in universities, realizing their dreams, building their career… It’s important that these children believe in themselves and don’t blame themselves or others. Children aren’t just our future, they’re our present!
What difficulties do children living with HIV encounter?
One of the difficulties they encounter is the distance between themselves, between their homes and the clinics. Some of these children live in isolated villages, for them it’s harder, but when they come we try to conduct a consultation with them and their relatives. They’re far, but together with us.
It’s especially difficult for children of migrants, whose parents left to work abroad. These children live with their grandparents, and this can poorly influence their intake of ART therapy. Some of them live in difficult economic conditions and have to earn money for their family, so treatment is put aside.
The children are growing, now they’re teenagers, and they’re wondering what’s next. We have to help them build their future. They have a lot of potential. We have to think about universities, open up scholarships for them and help them find jobs.
What questions do the children ask about their illness?
They often ask how long they will have to take ART therapy. They have a hard time putting up with the fact that ART is a life-long treatment.
They also ask a lot of questions regarding intimate and family life. Can they get married? Can they give birth to a healthy child? That’s why the sexual education provided by the AIDS Center is very important.
What do they fear?
Of course these children have a lot of fears. They’re scared of dying. They ask if they’ll be able to have healthy children. They’re scared of being outcasts. What will happen if someone learns about their HIV status? Psychologists and peer consultants help a lot in this regard.
Could you please tell us the story of a child you work with?
We learned about Adyl (his name was changed) through one of our volunteers. She came to us in tears and told us about him: “I saw him, he only has bones and skin left on his body, he needs help but his relatives hide him,” she said. He didn’t take ART treatment. As she continued talking about him, I started feeling anger, pity, indignation, and I wanted to put an end to this. When I asked her why his family had wasted so much time, she said that they were scared that neighbors would learn that the boy had HIV.
We bought products and sweets. When we entered his house, his grandmother immediately asked if someone had seen us. I looked at her sternly and said: “it’s not important, what matters is your grandson’s health”. She lowered her eyes… Then we saw this 12-year-old curious boy who looked at me with interest and childishly stared at the sweets we had brought. As we talked with him, I asked him who he wanted to become. “A soccer player,” he answered. I turned around so he wouldn’t see my wet eyes, and said: “Soon you’ll be able to run and play soccer.”
Adyl stayed home all the time and his parents didn’t take care of him because they were scared of stigma. His mother sent him only to private clinics. When we brought him to the regional hospital, he was diagnosed with HIV stage 4 (terminal stage) as well as with cachexia, esophageal candidiasis, dehydration, diarrhea. He couldn’t stand up. Our NGO volunteers talked to his relatives and warned them of serious consequences for the child’s health.
The next day, we hospitalized Adyl. After two months, Adyl and his mother came to our office in a satisfactory condition: doctors noted an increase in CD4 cells and a suppression of viral load from 72 000 to undetectable rates. We submitted documents for financial support.
This is one story among many others. Now Adyl runs, plays soccer and, most importantly, takes his ART treatment.
What can society do to help these children?
We need to provide them with education and a job. The government and society have an important role to play here. We need to be tolerant, and make stigma and discrimination unacceptable.
On the eve of June 1st, I want to say that the protection of children’s right shouldn’t only be on paper and in programs, but become a reality.
How do children with HIV live under the Covid-19 pandemic, and how can we protect them?
NGOs and other partners have all reacted to the Covid-19 pandemic. The information center “Rainbow” organizes online meetings on Zoom with children and teenagers. Now, more than ever, it’s important to continue talking to these children in order to support their psychological immunity.
Regarding immunity overall, we need to provide children with quality food and sanitary protections. The Red Crescent, UNAIDS, the UNDP and private people are already helping with this.