“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.
Strengthening the implementation of health policies
The initiative also promotes and supports multi-disciplinary approaches and teams to address the complex causes of health problems among refugee and migrant children – from trauma, anxiety and over-crowded conditions, to lack of hygiene facilities and immunization. As a result, support from the ‘RM Child-health’ initiative builds trust between refugee and migrant families and health providers. At the Centre for refugees and migrants near Bela Palanka in south-eastern Serbia, for example, the needs of refugee and migrant women have shaped the development of the Community Centre run by ADRA, with its Mother and Baby Corner for women with infants. Here, women can take part in language classes, sports activities and, crucially, in workshops about their own health and rights. “ The most important thing is that all the advice from our doctor is in line with their economic circumstances and current living situation [in Reception centres],” explains social worker Andja Petrovic. “The advice is tailored to their life and I think they particularly like that, because they can see that their situation is acknowledged. Because when they go to a doctor [in other facilities], they get advice that they can’t follow because they don’t have the living conditions for it.” Also in Serbia, funding from the ‘RM Child-health Initiative’ supports work by UNICEF and the Institute of Mental Health that looks beyond the provision of basic health care to assess the scale and nature of substance abuse among refugee and migrant communities. This cutting-edge field research will guide the development of materials and capacity building specifically for health and community workers who are in regular contact with young refugees and migrants, helping these workers to identify and tackle substance abuse by connecting children and youth to support services. As one researcher involved in the research commented: “Most of those children have spent several years without a home or any sense of stability. They can't make a single plan about the future since everything in their life is so uncertain. I can't begin to imagine how frightening that is.” By building greater rapport between frontline workers and children, and by equipping those workers with the support, skills and resources they need, the ‘RM Child-health’ initiative is helping to transform health policies into health practice. This vital work has been particularly crucial in 2020, as frontline workers have had to confront – and adapt to – the greatest public health crisis in living memory: the COVID-19 pandemic. Logo This story is part of the Project ‘Strengthening Refugee and Migrant Children’s Health Status in Southern and South Eastern Europe’, Co-funded by the Health Programme of the European Union (the ‘RM Child-Health’ initiative).It represents the views of the author only and is her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.