Unlikely faces of TB
Hlengiwe Mnguni and Betha Madhomu, News24
Cape Town - Two years ago Phumeza Tisile was looking forward to completing her studies in human resources and like every young person, she envisaged a bright future. Unfortunately her hopes and dreams were shattered when she was diagnosed with Multi-Drug Resistant tuberculosis (MDR-TB).
MDR-TB, like TB is a chronic infectious disease that usually affects the lungs. TB is mainly spread when someone with TB coughs or sneezes, and someone else breaths in the air-borne bacteria. But unlike "regular TB" it has built up resistance to drugs, making death a very high possibility.
Now an inpatient at the Lizo Nobanda TB Care Centre in Khayelitsha, Phumeza lives her days around her medications schedule of 20 pills and two injections.
The centre was set up as a joint pilot project by Medicins Sans Frontiers (MSF), the City of Cape Town and the Western Cape provincial government in response to the growing epidemic of MDR-TB.
"It’s been a shocking experience for me. They are telling me I might die... in a month... a year. They don’t know," she says without a hint of sadness or fear.
Throughout the interview, Phumeza would display none of the emotion one would expect from someone in her position. "That’s how she is about it," says resident TB doctor Jennifer Hughes.
Phumeza, who also blogs about her experience, has become an unlikely face of MDR-TB. The 20-year-old is HIV-negative and was perfectly healthy before she was diagnosed with the strain in 2010.
Another myth practitioners are trying to dispel is that it is only patients who do not complete their course of TB drugs that end up with MDR-TB.
"It’s important to remember that it’s not always ‘bad patients’ that end up with MDR-TB. You might just be sitting in a taxi and breathe it in," says Jenny, as she is known to the patients.
Phumeza does not know where and when she was infected. But after months of treatment, her MDR-TB has become extremely resistant to the second line drugs she has been on.
Second line drugs, says Jenny, are essentially “old” TB drugs that are brought back in to treat patients for whom first line drugs do not work anymore.
"They are much less effective, more expensive because demand for them is low, they are poorly tolerated by the body and less effective."
Phumeza’s MDR-TB has stopped reacting even to these drugs.
"There is nothing more that can be done for her."
While research on TB drugs is ongoing, results are relatively slow, with the development of a single drug taking decades. Costs are high and with TB largely affecting the poor, pharmaceutical companies are not exactly flocking to the party.
"There are more drugs for treatment of hair loss developed in the Western world than TB," Jenny says.
Unfortunately, nausea is not the worst side effect. For the past nine months, Phumeza has been deaf - an irreversible side-effect of one of the injections she takes daily.
Because the deafness is gradual, starting with the high frequencies, a patient like Phumeza has a decision to make: Does she continue with the treatment and become permanently deaf while hoping that the drugs keep her alive? Or does she keep her hearing and resign herself to certain death?
"I had to continue with treatment. It’s dangerous not to continue with the treatment because you might die," she says after reading the question by Jenny on a laptop screen.
But for 18-year-old Olwethu Sdawo, who is also an HIV-negative inpatient at Lizo Nobanda, there is more hope. Diagnosed at the end of 2011, Olwethu’s MDR-TB has responded well to treatment. Although she is also on the injection that has caused Phumeza to go deaf, she has not experienced that side effect.
"It’s hard accepting it [the disease]. It got me out of school. I was unhappy about that. All my friends are at school. I’m alone at home", she says.
But, unlike Phumeza, things are looking better for her.
"I’m going back to school next year," she says with a wide smile.
Such are the heartbreaking stories of people seriously affected by TB. According to reports, South Africa has a serious TB epidemic, with about 10 000 patients diagnosed with MDR-TB in 2009. Many patients are not even diagnosed. The country also has the second-highest TB burden in the world.
Despite an outcry over TB drugs, Faiza Steyn, the director of communications in the Western Cape provincial health department, told News24 that South Africa was "fortunate to be able to produce [manufacture] TB drugs needed locally. We have various suppliers that distribute via our own channels".
Steyn said "the calculation of drugs needed is based on the number of [TB] cases treated the previous year plus an inflator percentage based on year-on-year increases in numbers".
She said, however, that a number of trials in the early phases of TB were under way with the hope that the move will advance new and effective treatments. Current TB treatment uses a combination of drugs to prevent the development of resistance.
According to local scientists, the first advanced clinical trials were scheduled for completion by early next year.
South African researcher Dr Hassan Mohamed was recently quoted as saying the trials will make medical history, even if the vaccine doesn't work. He said the results will help scientists understand the world epidemic and form a key building block to hasten the eventual eradication of TB.
But for Phumeza, it might well be too late.
- For more information about the work that MSF is doing in Khayelitsha please click here.