When Dorothy*, a single mother of five, told her neighbours in the Kenyan capital, Nairobi, she had tuberculosis (TB), she expected sympathy and maybe even offers of help. Instead, she found herself so severely ostracized, she felt she had to move out.
"The kind of discrimination I faced from my neighbours made me regret [sharing] my condition with them; I could not even share the [communal] sink," she told IRIN/PlusNews. "Yes, tuberculosis is very infectious, but those who have it are not death traps."
According to Joseph Sitienei, head of the National Leprosy and TB Control Programme at the Ministry of Health, stigma associated with TB infection is a major impediment in rallying people to seek early diagnosis and treatment for the airborne disease.
"Many people still believe only those with HIV have tuberculosis and therefore they shy away from seeking diagnostic tests for TB, believing if they are found to have it, then it automatically means they are also HIV-positive," he told IRIN/PlusNews. "By those infected not seeking treatment due to stigma, everybody is at great risk."
Dropping out of treatment heightens the risk of multi-drug resistant TB (MDR-TB) developing, "which is very expensive and difficult to treat", Sitienei added. Kenya has 353 people with MDR-TB, of whom about 70 are on treatment.
According to the Kenya AIDS Indicator Survey, 11.4 percent of Kenyans say they would want a family member's TB infection kept secret due to stigma.
Kenya ranks 13th on the UN World Health Organization's list of 22 high-burden TB countries in the world, and is the fifth highest in Africa. In 2008, the country had approximately 132,000 new cases.
Research conducted in Ghana in 2008 found some of the main causes of TB-related stigma were: fear of infection; TB's association with HIV; health staff's own fears; self-stigmatization by TB patients; and the blaming and shaming of TB patients by the public.
While Kenya has successfully integrated HIV and TB services at the testing level, TB counselling still trails behind counselling for HIV.
Education is key
"We have done well in offering HIV testing and counselling and diagnosis of TB, but not much has happened in trying to offer counselling services to people with TB," said Nicholas Muraguri, head of the National AIDS and Sexually Transmitted Infections Control Programme. "This is crucial and possible because it can easily be done within the voluntary testing and counselling facilities."
According to Sitienei, public education about TB is crucial to provide a better understanding of the disease and improve health-seeking behaviour: "With proper counselling, people are better placed to understand their own situation and that of others," he said.
"The truth is, TB spreads very fast, but it is important to help people relate to those with TB without themselves having to fear putting themselves at risk," said Charles Mutua, a former TB patient.
"People must also be made to appreciate that TB infection is not necessarily synonymous with HIV infection. I, for example, had TB but I was never HIV infected," he added.
According to Andrew Suleh, superintendent of Nairobi's Mbagathi District Hospital, communication messages should include debunking popular myths - such as the idea that the disease can be transmitted by sharing utensils.
Ending health worker stigma
Sitienei said it was also important for health workers to understand the disease and treat patients with respect. In 2008, the government launched a communication campaign to reduce discrimination and stigma about HIV and TB among health workers.
"At times even the attitude among healthcare workers determines whether people seek services or not, even though our medical personnel are very conscious about issues of stigma," he said. "Addressing stigma involves fighting it among the public, health workers and those who are infected with TB."
Suleh noted that ensuring health workers were properly equipped to treat TB would help reduce stigmatization of patients.
"[Health worker stigma and discrimination] can arise when healthcare workers feel they are not given the adequate equipment or facilities to handle such cases," he said.
* Not her real name
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions
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