Survivors: Phumeza Tisile and Xolelwa Joni went to Paris to tell a world conference about their battle with extensively drug-resistant tuberculosis. (Mara Kardas Nelson)

'You can fight if you have support'

Mara Kardas-Nelson
Two young women are proving to the world that the most deadly strain of TB can be beaten.

Two years ago Phumeza Tisile's doctor told her that she didn't have much longer to live. After Tisile  had battled the extensively drug-resistant strain of tuberculosis (XDR-TB) for years, tests showed that she wasn't responding well to treatment. She was told to see a priest, as there were no other options. 

Then her doctors decided to use linezolid, an old antibiotic that can be used to fight TB.

"There was a 10% chance of surviving," Tisile says. 

"They said linezolid was my only hope."

Miraculously, the treatment worked and, in August, 23-year-old Tisile, who hails from Khayelitsha, Cape Town, was declared cured. 

Her life has since changed dramatically. Just last week she was traipsing around the streets of Paris, taking in the views of an autumnal city from the top of the Eiffel Tower, whooping it up at Disneyland Paris, and pulling tears and standing ovations from crowds ?at the Union World Conference on Lung Health. 

Tisile was in Paris to speak about her arduous fight against XDR-TB, and to argue for better treatment. 

It was there that she met 26-year-old Xolelwa Joni, another South African XDR-TB patient. Joni who is in her last two months of the nearly two-year treatment plan, also went to Paris to speak about her experience. 

XDR-TB mostly deadly form
Both their stories are harrowing. Cases of multidrug-resistant TB, of which XDR-TB is the most deadly form and hardest to treat, is largely understood to occur as a result of a patient not adhering to a drugs regime, or a doctor misdiagnosing or giving the wrong medicine. 

But both Tisile and Joni were first-time TB patients and contracted XDR-TB from members of their community. 

Because there were no tests that could diagnose XDR-TB at the time she became sick, Tisile was diagnosed with regular TB, and then multi-drug resistant (MDR-TB), before her doctors realised she had XDR-TB. As a result of misdiagnosis, for eight months she took drugs that didn't work. 

One of these was Kanamycin, which caused her to permanently lose her hearing. She was finally placed on an XDR-TB regimen. 

In total, Tisile took 20 000 pills. 

Joni, who contracted XDR-TB from her twin sister, is still taking 27 pills a day. She was hospitalised for four months at Fort Grey Hospital in East London and also received months of Kanamycin injections, but her hearing remains intact. 

Both women recount harsh daily side effects, ranging from nausea to headaches to depression. 

Tisile says that having treatment for two to three years effectively "puts your life on hold". 

Joni says she was able to make it through the treatment because of the support of her family, who visited her at the hospital every day. 

"They gave me hope," she says. 

"When they couldn't be there they would send an SMS to say: 'How are you doing? How are you feeling?' It's good to know that someone loves you."

TB still a major killer in developing world
While it has largely been eradicated from the developed world, TB remains a major killer in the developing world. According to the World Health Organisation (WHO), somebody dies of TB every 25 seconds.

Infection is spurred by poverty, limited access to healthcare, poor health systems and, in sub-Saharan Africa, HIV. While the WHO reports that worldwide TB rates are dropping, albeit slightly, in South Africa they are actually rising, and everywhere MDR-TB is on the rise. 

The largest increase in MDR-TB cases is in India, South Africa and Ukraine.

 Tisile's experience with misdiagnosis is not an anomaly: the WHO estimates that only one in four MDR-TB patients are accurately diagnosed, and less than half the patients battling MDR-TB are successfully cured because there aren't new drugs or new treatment regimens. 

Joni's twin sister falls into this cate-gory. Despite undergoing treatment for four years, she still tests positive for TB. Fearing that she's incurable, her doctors have sent her home to be with her family. 

"But she's really strong," says Joni. "She still has hope. She's a Christian and so she has faith."

Meeting Tisile has renewed Joni's optimism about her sister's prognosis. Upon returning to South Africa this week she's planning to speak to her about linezolid, the drug that helped to cure Tisile of XDR-TB. 

Restrictive patent laws
Tisile is furious about the limited access to linezolid. In South Africa, where it is under patent, it is sold at about R700 per pill in the private sector, and nearly R300 in the public sector. Generally a tablet a day is needed for at least six months. 

Globally, generic versions are available for as little as R25 per tablet. 

As a result of the high price, Tisile says, only handfuls of patients across the country are receiving the treatment. 

She received the drug because her treatment was supported by the humanitarian organisation Medecins sans Frontieres, which was able to cover the high cost. 

Tisile says that South Africa's patent laws need to be amended in order for generics to make it to the market. 

Joni's sister is also waiting to hear whether she is eligible for bedaquiline, a new MDR-TB treatment. The drug has been approved by the Food and Drug Authority in the United States, but in South Africa is only available through clinical trial sites. 

About 200 South African patients are receiving the drug. Bedaquiline is the first anti-TB drug to hit the market in over 50 years, but it's only meant to treat MDR-TB. 

The drug company responsible for the product, Janssen, has only conducted phase IIb (trials that test the drug on a small group of people), and there were some worrying results that need to be explored in phase III trials (large-scale trials), which have yet to begin.

TB funding crisis
Groups like the TB Alliance are hoping to bring new TB regimens to the market. These would shorten treatment for both normal TB and MDR-TB. But funding for research and development remains limited. 

At the conference, the US-based Treatment Action Group released a report which showed that funding for research and development for new drugs and diagnostics dropped in 2012, the first decrease the group has seen since it began tracking funding in 2005. 

"Funding for TB research and development overall is dangerously inadequate," it said. 

The report criticises members of the Brazil, Russia, India, China and South Africa grouping, which host the majority of the disease's burden, for not investing more in research and development.

Asked about what they thought of the Paris conference, Tisile and Joni effectively give the same answer. 

"Being here and talking about TB without any change being made doesn't make sense," says Tisile. 

Joni shakes her head and gives a resounding "tsk" when the question is posed to her.

"If it's just a lot of talk, and it amounts to nothing, then what?" 

                                                 

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