Tackling the stigma of TB in Kyrgyzstan
Written by: Amanda George
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Rassoha and her son Rachid. Photo by Claudia Janke/British Red Cross
Rassoha, 31, and her son Rachid, 13, live on the fifth floor of a Soviet apartment block in Kara Balta. Poor living conditions, coupled with poor working conditions, have made Rassoha prone to a weak immune system. It's not surprising she contracted tuberculosis (TB). In the impoverished neighbourhood where she lives it isn't uncommon. Despite this, Rassoha doesn't want people to know about her "condition". "I am scared that if my son's friends find out that I have TB, they will stop playing with him," she says. "When I found out that I had TB I was so shocked and depressed because I used to think that it was not curable. I was scared that my son would also catch it and that we would both die. "The day that Jelena, a Red Crescent nurse who lives in my area, starting visiting us, things started to look up. She brought us food packs that were a real help because I am only on 30 percent of my salary now. But the psychological support she gives me is even more important. After I see her I am always feeling more positive, stronger and think that things are not so bad. "Jelena is the only one I can talk to - my parents only see tragedy and think that this is the end of the world, but Jelena taught me that this disease can be cured. She would repeat this to me every week until I could finally believe it. She also encouraged me to carry on with my treatment even though it made me feel sick with headaches and nausea." Jelena, a qualified doctor, has been working as a Red Crescent nurse in Kara Balta, Kyrgyzstan, for seven years. The slogan on her bib reads: "All against TB". Jelena is helping those in her community with TB to overcome not only the disease - which is curable - but also the stigma associated with it. "People are afraid that they might lose their jobs or that their relatives might alienate them if they find out they have TB," she says. "They are afraid to be open about the disease." The stigma in Jelena's community is so large that even her son does not like that she works with TB clients. Stigma and discrimination associated with TB are among the greatest barriers to preventing further infection, providing adequate care, support, treatment and alleviating impact. TB-related stigma is triggered by many factors, including the lack of understanding of the disease; myths about how TB is transmitted; prejudice; lack of access to diagnosis and treatment; irresponsible media reporting; the link between HIV and TB and fears relating to illness and death. To tackle this, the Kyrgyz Red Crescent TB programme, funded by AstraZeneca through the British Red Cross, reaches out to raise awareness of the disease among the general population and specific target populations in an educational push, through classes in schools, leaflet distribution and radio announcements in markets and work places. This educational component is supported by direct observation of treatment of people with TB by Red Crescent visiting nurses who help clients adhere to treatment and provide information for their relatives as well as social and psychological support and counselling. Jelena recalls one man who was terrified that his mother-in-law would find out that he had TB and make her daughter divorce him. He made Jelena promise never to go to his house but to meet at another location, in case he was discovered. "Some people are so scared of the stigma that when they are able to go back to work they lie about why they were off sick," she says. "Some people are more comfortable saying they had syphilis than TB!" The most moving case Jelena remembers is a 76-year-old woman who was diagnosed with TB and hospitalised for one month. "She was so distraught that she had contracted TB that she was planning to kill herself by throwing herself over the hospital balcony," says the nurse. "The only reason she didn't is because it was never empty. She was profoundly depressed when I began to visit her. Helping her overcome TB and understand that she had not done anything wrong to catch it is one of the most satisfying experiences I can remember." High poverty levels exacerbate the issue of TB, with poverty levels in Kyrgyzstan significantly exceeding those in many developed and developing countries. In 2007, TB incidence stood at 109.7 per 100,000 people while the TB mortality rate was 9.7 per 100,000 people, according to the National Centre of Statistics. That was down from 2005 but still alarmingly high. The Red Crescent is seeing the results of this programme. Despite working with the most vulnerable populations, treatment completion rates within this targeted population have reached 91 percent, compared with the 85 percent Ministry of Health figure. Roza Shayakhmetova, secretary general of the Kyrgyz Red Crescent, says: "TB is not just a medical problem, but is also a social problem. The current social situation in the country contributes towards the spread of the disease." It is this social problem the Red Crescent is working to address through advocacy, community-based social mobilisation and communication initiatives to combat the fear and misinformation that exists in Kyrgyzstan around TB. When asked if she is hopeful for the future, Rassoha smiles widely for the first time. "It is so good to know that people care," she says. "I am almost finished with my treatment. Now I have hope for the future."
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Amanda George is media relations officer at the British Red Cross. She has worked in communications for the voluntary sector since 2003, after giving up the exciting world of travel writing for something slightly more lucrative and equally exciting. She is in the middle of an MA in Environment and Development Studies at Kings College London.