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Tuberculosis accounts for 25% of HIV deaths. As experts gather for the 43rd Union World Conference on Lung Health in Kuala Lumpur this week, Key Correspondent Hope Mafaranga speaks to Ugandans living with TB.
In January, eight months into her marriage, Ugandan Jolly Nampija was diagnosed with tuberculosis. She spent a week in Masaka hospital but when she was discharged her husband asked her to stay at her parents’ place saying he and his family had to travel to Kampala for a wedding and there was no one to take care of her.
For two weeks her husband did not call to check on her. When her mother took her to her husband’s home, her mother-in-law said they didn’t want her in the house because she had TB.
“My husband wasn’t even ready to face me. My mattress, bed sheets and other belongings had been burned,” Nampija says.
Six months on Nampija has completed her course of TB treatment and was given the ‘all-clear’ by her doctor. But she says she does not know if her husband and his family will ever take her back.
The reality of tuberculosis
Every second someone in the world gets infected with the bacterium that causes tuberculosis. One third of the world’s population, around 2 billion people, already have the TB bacterium in their body.
It is for this reason that health workers in western Uganda go knock on doors in congested slums once a week to convince people who may be living with TB to visit the hospitals for diagnosis.
The health workers have been doing this for the past three years in a bid to fight and prevent TB in the most congested slum areas of Kisenyi in Kabarole district, Biafra in Mbarara district and Nyendo Senyange in Masaka district. They set up tents to serve as testing centers and will also counsel people from there. In addition, they offer HIV/AIDS testing and counselling services as TB is common among people living with HIV and is the leading cause of death among HIV positive patients.
The health workers collaborate with local leaders in the slums to mobilise and sensitise community members to the dangers of TB and to urge them to test for the disease. They also use local radio stations to call people to come and get tested.
“We as health workers identified this cause and recognise the effect of TB in congested slums, and we want to save the people from getting this disease,” Dr Ronald Muhame, the in charge of Kibito health IV in Kabarole district said.
Stigma and challenge TB patients face
TB remains a major public health problem in Uganda. According to the 2009 WHO Global TB Report, Uganda ranks sixteenth among 22 high burden countries. In addition, the country has an emerging multi drug resistant TB (MDRTB) problem.
Those who develop tuberculosis face an exhausting disease. Treatment takes months and many people with TB face huge social stigma. The disease often leads to loss of income and isolation.
Among them is Tukamubona, a taxi driver from Mbarara, who lost his job due to TB. He was off and on at his work place and was weak most of the time but had no idea he was suffering from TB. This changed when he met a group of medical volunteers who were testing slum dwellers and grabbed the opportunity to test for the disease.
“I lost my job after contracting TB and I was unable to perform my duties, I would cough all and day and night, not until I took sputum test and tested positive for TB [did I know I had the disease]. If I had known earlier I would have [not] lost my job,” he says.
His story is similar to many others. “The kind of discrimination I faced from my neighbours made me regret sharing my condition with them; I could not even share the communal toilet with them,” Kabakumba Annette, a business woman in Fort Portal, says.
Dr John Muhumuza, who coordinates the slum visits, expresses fear that despite their intervention the level of infection has not gone down. He attributes this to a lack of treatment adherence by TB patients.
“Most people do not want to test while others refuse to adhere to the treatment, which results into extremely drug-resistant (XXDR) TB,” he says.
Dr Rhoda Tuhaise, a TB expert, confirms this, saying that four of the 12 patients from Biafra slum in Mbarara district had recently been detected with totally drug resistant TB. She adds that poor ventilation, a lack of sunlight and dampness are common in slum environments and this aids the growth of the TB bacteria.