January 19, 2016
LUSAKA, ZAMBIA— Catherine Lungu knocks at the partially open door of a home and waits. She knocks again but gets no response.
Lungu walks around the house to a makeshift latrine surrounded by a frame hung with sisal sacks. She lifts the sack that acts as a curtain to the latrine and calls to Banda, the owner of the home, but only a swarm of flies greets her.
She runs back to the house and, without knocking, enters. She sees Banda lying on a reed mat.
“Ah, you are here!” she says. “I was worried! We expected you at the clinic yesterday. You were due to collect your medication. This is the second time you are missing your appointment.”
Banda has tuberculosis, a disease often mistaken in her community for HIV. Banda asked that only her surname be used in this article, to avoid further stigma.
“I had no one to bring me to the clinic,” Banda says.
Lungu, a former TB patient, is part of a group of community treatment supporters in Zambia fighting the stigma related to the disease, and helping patients get the treatment they need. All the treatment supporters are volunteers organized by the Ministry of Health. Groups including the Centre for Infectious Disease Research in Zambia use the treatment supporters to spread awareness and help eliminate the stigma surrounding TB.
Prudence Phiri, GPJ Zambia
“People believe that only HIV-positive people suffer from TB, and most of them shun taking care of TB patients for fear of getting the disease,” Lungu says. “That is the perception we want to remove.”
Tuberculosis, an airborne disease, is the leading cause of death for people infected with HIV, according to 2015 data from UNAIDS.
HIV, the virus that causes AIDS, suppresses a person’s immune system, making him or her vulnerable to other health issues, and tuberculosisis a particular threat.
Tuberculosis and HIV are a “lethal combination,” the World Health Organization reports, “each speeding the other’s progress.” About a third of all deaths of HIV-positive people in 2014 were caused by tuberculosis, according to the organization.
Zambia’s estimated rate of TB is three times as high as the global average, according to the WHO’s 2015 Global Tuberculosis Report. The Ministry of Health has attributed the high incidence of TB to the HIV epidemic, population growth and overcrowding in urban areas.
HIV prevalence is four times higher in people with TB than in those without it, according to a survey the Ministry of Health conducted between 2013 and 2014.
Treatment supporters say stigma forces patients to keep their diagnosis secret. The disease, when untreated, is highly contagious, so the secrecy puts others at risk of infection.
“Family members of a person diagnosed with TB are supposed to be screened, as they might have been infected before the patient was put on treatment. But if a patient has kept the TB secret, it becomes difficult to screen the family,” says Sisa Hatwiinda, a TB coordinator at the Centre for Infectious Disease Research in Zambia.
The stigma also hinders effective treatment and compliance to drugs. Some patients shun treatment entirely, or seek it secretly. Like Banda, some patients struggle to get to appointments when they are weak and can’t find anyone to help them.
Lungu says the stigma she faced when she was diagnosed with TB 20 years ago inspired her to volunteer to educate her community about the disease.
“I was open about my TB status because I understood that it was a disease like any other, but some of my family members refused to eat or drink water from my house, saying they would get TB,” Lungu says.
She was pregnant when she was diagnosed with TB. Neighbors mocked her, she says, and told her that she must have HIV and that her baby would be stillborn.
Lungu went on TB treatment for nine months before she recovered. Her baby was born healthy. She started educating the community on TB after her recovery, she says, and in 2003, she attended training on TB and HIV at a local clinic through the Ministry of Health.
Lungu is HIV negative, and she uses her status to dispel the belief that only HIV-positive people suffer from TB.
Some families isolate TB patients over fears of contracting the disease, sometimes having them use separate utensils, she says.
“What people don’t understand is that TB is less contagious when one is on treatment,” Lungu says.
Francis Mbuzi, a former TB patient and now a treatment supporter, says he might have died had it not been for the assistance he received from Lungu and other treatment supporters.
“I was on ART, and along the way I stopped taking the medication because I was drinking too much beer, which made me miss my clinic appointments,” Mbuzi says, referring to antiretroviral therapy.
Mbuzi says his mother is a treatment supporter, and she introduced him to Lungu, who helped him stay on his treatment plan.
Hatwiinda says treatment supporters are “the eyes of the clinics.”
“They help identify some of the patients that are adamant to come to the clinic, and they are the ones that see the myths and misconceptions about TB in their communities, so they are well placed to fight stigma,” she says.
Dr. Nathan Kapata, program manager at the National Tuberculosis and Leprosy Control Programme, says TB, and the stigma surrounding it, won’t be eliminated without treatment supporters.
“TB is a community disease,” Kapata says. “The community supporters are critical in eliminating TB and stigma.”
Lungu says she recruits treatment supporters from families affected by TB.
“When I counsel the patients, I let them know the importance of becoming a community supporter,” she says. “I tell them to educate other family members on what they have learned about TB and HIV, that way information is spread.”
Prudence Phiri, GPJ, translated some interviews from Nyanja.