30 November 2018
HIV-positive… and fearless
During the first TEDxYouth event organized on 17 November in Kazakhstan, Baurzhan, age 13, and his mother Aliya spoke about living openly with HIV. This is his story. Standing before more than 100 people, Aliya asks if anyone in the audience remembers the incident in 2006 when 149 children in southern Kazakhstan were infected with the human immunodeficiency virus (HIV) at a local hospital. A few hands go up. Hesitantly. “Not too many,” sighs Aliya. “That’s 149 families facing profound pain, shock, complete lack of support and understanding.” Indeed, when the news first broke at the time, there was very little by way of public understanding and sympathy. On the contrary, the families affected have spoken about the pervasive rumors – including one suggesting that a special area would be built to quarantine the families – that they had to endure. Some families were even broken up. The sense of isolation still persists for many. “In our society,” Aliya says, “HIV is still perceived to be a ‘plague’ of the 21 st century. These families and children are hiding. They do not open up about their HIV status. These children are still invisible to society.” Then she adds, “They all live in great fear. All, but one.” A voice chimes in. “I am one of those 149 children. I am HIV-positive and today, I am the only teenager in Kazakhstan with HIV who is living openly,” says Baurzhan, age 13. Baurzhan and his mother at their home in Kazkhstan. Working towards acceptance Aliya’s son Baurzhan was just nine months old when she learned that the blood transfusion he had received for treatment was infected with HIV. When he started going to school, Baurzhan understood that there were different kinds of viruses and one of them happened to be living in him. He did not feel different, until teachers asked him not to play during recess or physical education class. “We realized that for school to be an understanding environment, we needed to organize training, raise awareness among teachers on the importance of tolerance towards children with such illnesses,” his mother says. The lanky teenager remembers crying in the school gym changing room after his classmate called him offensive names related to HIV. “I was not ready to hear it. It hurt a lot.” The incident made Aliya realize that students needed awareness training, too. She helped the school organize lessons on child rights and responsibilities explaining the universality of rights. After the first session, the boy who had offended Baurzhan apologised for what he had said. “For 11 years, I have been taking medications every day to control the amount of virus in my blood. My immunity is 900 cells. Do you know that the immunity of a healthy person is 1200 cells? So, my immunity is that of a healthy teenager,” he says. “My viral load is less than 50 copies. This means that I am just a carrier, but I cannot transmit the virus while I am taking medications.” Together with friends, Baurzhan created a self-help group called “Asian teens” where they share their experiences of living with HIV. “I want to support other kids who are living in fear because of their HIV status. I want to be a role model of living openly and without any fear.” As Baurzhan says these words, the audience erupts in standing ovation. After the TEDx talk, Baurzhan and his mother said that many people approached him and asked if they could give him a hug. “I really liked the feeling of speaking in that room – it was filled with warmth, the audience showed that they cared”, he said. “My friends who are also living with HIV cannot wait to see my video, I think they will be surprised to see the positive reaction my story received.” Baurzhan with his sibling at the family home. Baurzhan with his sibling at the family home. HIV today and steps for the future Since the outbreak in 2006, the HIV/AIDS situation has changed. By 2010, UNICEF helped decrease the rate of HIV transmission from mother to child in south Kazakhstan, which at the time had the highest number of deliveries by HIV-positive women. At country level, joint efforts of the Ministry of Health and UNICEF led to dropping the HIV transmission rate from 10.9 per cent in 2007 to 1.8 percent in 2014. Kazakhstan is now submitting a request to be certified as a country that virtually eliminated mother-to-child HIV transmission. However, more work remains, says UNICEF Health and Nutrition Officer Kanat Sukhanberdiyev. “Globally, we still see that many children are dying from HIV/AIDS. We have a long way to go until children and adolescents with HIV receive the full package of healthcare and psychosocial support.” On this World AIDS Day, UNICEF is calling on the world to increase investments in HIV prevention, testing and treatment programmes. Otherwise, by 2030, the lives of some 360,000 adolescents will be at risk of AIDS-related diseases. Find out more about UNICEF’s work on HIV in Kazakhstan.