Stigma Surrounds HIV in Kyrgyzstan

Two families with HIV-infected children say they have had to leave their homes in southern Kyrgyzstan because of the humiliation they have suffered at the hands of fellow-villagers and even relatives.



The families are among those affected by a wave of HIV cases in 2007, when women and children in the Osh region were infected with the virus after undergoing treatment at public hospitals.



The fact that two families felt forced to move away highlights the stigma attached to HIV infection, as well as the general lack of awareness about how the virus affects people.



“All of our relatives have completely stopped visiting us,” said the mother of an HIV-positive child from Osh region, who has moved to the north of Kyrgyzstan.



The other family relocated to a different village in the south. A lawyer representing 25 families, Fatima Habibullina, said others would like to leave as well, but cannot afford to.



HOSPITALS IDENTIFIED AS INFECTION SOURCE



In 2007 and 2008, 80 new HIV cases were recorded in the Nookat and Karasuu districts of Osh region alone. Most involved children aged between two months and two years. Eight mothers were also infected. Since the husbands in these households tested negative, the evidence pointed to hospitals as the source of infection.



Over the past two years, six of the children have died from HIV/AIDS related illnesses.



An official investigation conducted after the mass infections were identified found that the virus was transferred via the repeated use of unsterilised medical instruments.



Fourteen doctors at state hospitals were charged with negligence and with the offence of infecting patients.



When the case came to trial last August, the Osh regional court stripped ten of the doctors of their right to practice and gave them suspended sentences of between three and five years. The other four were acquitted for lack of evidence.



On February 24, after an appeals process and legal action mounted by parents dissatisfied with the outcome, Kyrgyzstan's Supreme Court upheld all the decisions passed by the lower court.



COMMUNITY SHAMES “HIV FAMILIES”



For women who are HIV-positive themselves or have children who are, life in the village has become increasingly difficult as family and friends shun them, depriving them of important social networks.



“Almost everybody in the village knows that these families have HIV-positive children,” said Habibullina, who works for the Rainbow Information Centre, an Osh-based group that provides HIV-positive people with legal advice.



One mother who has an 18-month-old baby carrying the HIV virus, said, “There is a tradition in the village that if you run out of bread, you can borrow it from your neighbours. However, our neighbours know there’s an HIV-infected child in our family and they don’t want to drink tea at our house, accept bread from us or even greet us.”



“There have been many times when our older children have come home crying,” she added.



Another woman, who also has a child carrying HIV, said, “When I walk along the street, children start shouting, ‘She’s got AIDS’. I don’t care about the neighbours, but many of our relatives won’t invite us to family celebrations and they forbid their children to come to our house.”



Erik Ryskulov, a lawyer defending one of the doctors charged with negligence, said the reason why the names of those infected became so widely known was that patient confidentiality was not observed properly.



According to Habibullina, six of the eight HIV-positive women were driven from their homes by their husbands. They are now living in rented flats, which non-government groups are helping to pay for, or at crisis centres and with relatives.



Aygul Ismailova of the National AIDS Centre, a government agency, said that many of the husbands believed their wives had infected the children.



Sultan Mamytov, also from the Rainbow centre, says a move elsewhere will be good for the children involved, but that “on the other hand, there is no guarantee that rumours about their illness will not spread in the new locations. These families will always have to live in some isolation from others.”



DISCRIMINATION INGRAINED DESPITE EDUCATION EFFORTS



Official figures indicate that HIV cases are on the rise in Kyrgyzstan generally. In late January, a national forum of groups involved in HIV prevention heard that of the 2,031 cases currently captured by the statistics, 550 date from 2008 alone.



Experts speak of significant discrimination against people living with HIV, which they attribute mainly to public ignorance about the nature of the virus.



The Adilet Legal Clinic reports discriminatory behaviour when people seek medical treatment, apply for jobs, attend leisure facilities, and send their children to kindergartens.



Kyrgyz NGOs are working to raise awareness. The Rainbow group, for example, is about to publish illustrated books providing clear explanations about HIV/AIDS which it will distribute in rural areas. It will also arrange meetings with schoolchildren, teachers and parents to discuss HIV-related issues.



Speaking at the HIV forum in January, Boris Shapiro of the government committee which is coordinating state and non-state work in this area, said, “Thanks to the NGOs, every schoolchild now knows about HIV infection and methods of preventing it”.



While the NGOs clearly have a role to play, Mamytov believes public education initiatives should be driven by government.



Ismailova, from the government’s AIDS centre, accepts that more needs to be done to tackle discrimination, but says it will take time for attitudes to change as HIV was a taboo subject until recently.



“The population of Kyrgyzstan has had very little time to assimilate this information and deal with it,” she explained. “There used to be a deep-rooted stereotype that AIDS is a terrible disease that’s generally prevalent among sex workers and drug addicts.”



Ismailova said discrimination was common among healthcare professionals, leading to some patients being denied treatment.



“There have been cases when medical staff turned HIV-positive patients away from hospitals because doctors were afraid of being infected,” she said.



Ryskulov warned that the cases identified so far might be just the tip of the iceberg, and said things would only get worse if the authorities continued to deal with outbreaks by singling out doctors for blame and prosecution, ignoring.



“Many doctors are saying they get paid a pittance and then face [criminal charges] for doing their job,” he said, warning that medical workers were likely to leave in droves.



Sabyr Abdumomunov is a stringer for Radio Free Europe/Radio Liberty’s Kyrgyz Service.