CAPE TOWN, South Africa – Goodman Macanda’s life revolved around taking medicines. Every morning he took ten pills. Then he went to the community clinic in Khayelitsha and waited while nurses searched for a place that wasn’t already swollen, so they could give him yet another in a six-month-long series of daily painful injections. After returning home, he took another ten pills.
“You don’t default because you want to,” he said at the Union World Conference on Lung Health in Cape Town, South Africa. Macanda’streatment for extensively drug-resistant tuberculosis caused extreme drowsiness, vomiting, and other debilitating side effects. “You don’t want to talk to anyone, all you want to do is sleep all day, he said.
“You default because you get tired of the medication,” he said.
The only thing that kept him going, he said, was the support he received from counselors. “There are some days when you feel like you don’t want to take it anymore, you want to let it go,” he said. “But when you have support from people, you can go on.”
Macanda fell ill in 2013 and went to a private doctor who told him he couldn’t figure out what was wrong with him. After going to another clinic, he was diagnosed with multidrug-resistant tuberculosis “They said it was big TB” he said. They told him he had three months to live. Three months later, he was told he had extensively-drug resistant tuberculosis, “another new name I didn’t understand.”
“After diagnosing you, they just leave you there to fight alone,” he said.
Macanda was alone until he was contacted by Médecins Sans Frontières and became the first patient from MSF’s decentralized drug-resistant tuberculosis care program in Khayelitsha to receive XDR-TB care treatment in his community’s clinic, rather than in a hospital.
“Getting locked away in a hospital makes people more sick,” he said.
One of his counselors from MSF, a former MDR-TB patient, agreed and said her MDR-TB treatment was like being locked away in jail for six months. “Giving a patient freedom and trusting them is the most important part of treatment,” she said.
“Having a support group changes everything,” Macanda said.
Joan Mangan, a behavioral scientist with the Centers for Disease Control, agreed. After a big rollout of tuberculosis diagnosis and treatment of patients in the Phillipines in 2007, treatment success dropped from 63 percent to 43 percent. The CDC found that the biggest factors for loss to follow up are alcohol abuse and self-rated severity of vomiting, she said, and a close follow up is financial insecurity due to loss of income during treatment.
The biggest factor for adherence, however, was social support.
“A lot of the solutions to loss to follow up come from listening to the patients,” she said. “We’ll find solutions that don’t require brain surgery.”
The national tuberculosis program in Kazakhstan practiced a model of care similar to MSF’s Khayelitsha program in Akmola state, Yana Besstrashnova said, where the program transferred money from maintaining hundreds of hospital beds to providing social support for drug resistant tuberculosis patients.
After moving from the hospital model of care to home-based care, they increased treatment success to 89.4 percent among drug susceptible patients and 83.7 percent among MDR-TB patients, Besstrashnova said. The loss to follow up rate was just 0.7 percent, she said.
“We don’t need money, we need support,” Macanda said. “Anyone who has a disease, we only need support. That’s all we’re asking for.”