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.
“I’d settle for a year being sick, as long as it’s not her, not for a single day”
Little Varya was 3 years old when Alexei and Nastya Naumov adopted her from an orphanage. They had long dreamed of children, when they found this girl who looked so much like Alexei Naumov. Nothing could stop them: neither difficulties, nor Varyusha's diagnosis – HIV, which the orphanage told them about right away. Varya Varya at the New Year celebration Nastya and Alexei decided that they wouldn’t conceal their now 9 year old daughter’s diagnosis. It is better to put all the cards on the table, than constantly have to look over their shoulder, they say. The parents always emphasize: they have never regretted their decision. In November 2018, when Varya was in the first grade, she fell ill with scarlet fever. The family had just moved to Almaty from Atyrau. Nastya Naumova brought her daughter to two pediatricians, but they did not suspect anything. And then their infectious disease specialist at the AIDS center confirmed the diagnosis. ‘Guys, you have scarlet fever,’ she said. “It seemed to me that this was a forgotten disease, that it is simply impossible. Varya has recovered, but I was still afraid. And as it turned out, not in vain,” says Nastya. The Naumovs were warned that live vaccines are contraindicated for a child with HIV. “I was afraid that Varya would get infected,” Anastasia says. “I didn’t know how the virus would work with her diagnosis, how it would affect the body. And, thank God, for a long time she was able to avoid infection. But, as it turned out, not measles.” In Kazakhstan all children diagnosed with HIV usually receive a medical contraindication for vaccination, which applies to the so-called live vaccines against measles, mumps and rubella. Although in accordance with the WHO clinical protocol, a vaccine against measles, mumps, and rubella (MMR) and other measles-containing vaccines (MCV) should be considered for HIV-infected patients who are asymptomatic or mildly immunosuppressed, as per the routine national schedule. For infants with high risk of exposure to the measles virus, an additional dose of single-antigen measles vaccine administered at 6–11 months of age is recommended, followed by a first dose of routine MMR or another MCV at age 12 months or older (with a minimum interval of 1 month between doses).1 Parents can learn more about each vaccine, included into the National Vaccination Calendar, at a special website dedicated to children routine vaccination: EGU.kz In February 2019, when Varya was preparing to go to school, she noticed red dots on her legs: hemorrhagic vasculitis. Nastya and Varya were immediately taken to the hospital; they thought it was an allergy. For 3 weeks the child was not diagnosed, doctors had not realised that it was measles. Anastasia Naumova shares her story Anastasia Naumova shares her story Later, it turned out that hemorrhagic vasculitis was Varya’s body's reaction to measles. The incubation period was already in progress. But the doctors the Naumovs visited did not understand this. Their infectious disease specialist arrived at the hospital only after Varya's temperature rose to 40 degrees, and diagnosed her with measles. Varya and her mother were taken to the infectious diseases hospital. Varya at the hospital with measles Varya at the hospital with measles “I will never forget the following 10 days…,” Nastya says. Varya fell seriously ill. She was burning with a fever, crying from pain at night. There was nothing Nastya could do to help her child. “I have hardly slept these ten days. I would lean on the table, doze off, the timer would go off - I set Varya's temperature to be measured every hour. And you can't do anything - the treatment is symptomatic,” Nastya says. The complications were the worst. Varya had right-sided pneumonia, so severe that she could not swallow saliva. How would Nastya give her pills? Water? Food? “I was almost shoving this pill into her mouth, and Varya cried and shouted: ‘Mom, it hurts! Mom, don't!’ Almost two years have passed since that moment, and I am still shaking. I’d settle for a year being sick, as long as it’s not her, not for a single day. When you see that your child suffers so much simply because someone did not give her the vaccine, how would you feel about it? I have no words,” Nastya says. In total, they spent about 6.5 weeks in the hospital. During their stay the hospital was full. Children and many adults - all with measles. Fortunately, Varya pulled through. Emaciated, she weighed 17 or 18 kilograms, weak, but alive. Varya does not mention her illness. Nastya noticed that after the illness Varya started having problems studying. Apparently, this ten day long fever affected her cognitive abilities. “I believe if opponents of vaccination ever saw how people bear measles, they would think about it. It's a shame that children who have medical contraindication are at risk,” Nastya says. The Naumovs then vaccinated their daughter (with those vaccines that are not contraindicated for her) in an ordinary district hospital. “The child has HIV infection, an incurable disease, but even she did not have a reaction to the vaccine,” Nastya says. In 2019, there was an outbreak of measles in Kazakhstan with 16,871 cases, of which 13,326 (78.9%) were laboratory confirmed.2 19 children and two adults dies from the disease. Among the victims of measles, 8 children were not vaccinated due to medical contraindications. In 2020, 3,270 cases of measles were registered, of which 2,265 were children under 14 years of age. False contraindications and medical exemptions have been identified as one of the main causes of missed opportunities to vaccinate against measles during the root cause analysis conducted by UNICEF Kazakhstan. The analysis was the part of the UNICEF Kazakhstan Measles Outbreak Prevention Program funded by the US Agency for International Development (USAID). “We sincerely thank USAID for partnering in such an important program for children's lives to prevent a measles outbreak in the future and strengthen the immunization programme in Kazakhstan. We believe that this project will help save and preserve the lives and health of Kazakhstani children and families," said the UNICEF Representative in Kazakhstan Arthur van Diesen. The Program provided technical support to analyze the causes of the measles outbreak, study parents' views on vaccination and awareness campaigns, as well as recommendations for improving the supply of vaccines and building the capacity of healthcare workers for immunization. For example, UNICEF is providing a series of trainings to address false contraindications in cooperation with the Association of Family Doctors of Kazakhstan in Aktobe, Atyrau, Eastern-Kazakhstan, Kyzylorda, Turkestan, Karaganda oblasts, Almaty and Shymkent.