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South Africa: Ending my journey with extremely drug-resistant TB
They lay there on a small saucer – five bright yellow capsules, a big white tablet and a brown capsule. With one last, brave gulp, Phumeza Tisile, 23-years-old, put an end to her daily ritual of the last two years and swallowed the last of the 20,000 pills she had taken to cure one of the most severe forms of tuberculosis (TB): extensively drug-resistant TB (XDR-TB).
When it was done she cried tears of joy.
Not a statistic
“I never thought this day would come,” Phumeza says beaming, “I’ve beaten XDR-TB! Getting cured at last is very exciting.
"It was scary at first. But you live in hope – hope that one day you will be cured. I didn’t want to be a TB statistic and that kept me going.”
Phumeza has beaten XDR-TB against all odds after an arduous two years of treatment.
The disease has a less than 20 percent chance of cure, but because getting a proper diagnosis took so long, her chances of survival were even less to begin with.
Before being treated by Médecins Sans Frontières/Doctors Without Borders (MSF), an accurate diagnosis of Phumeza’s XDR-TB was delayed due to the lengthy process required to confirm XDR-TB infection using available diagnostic tests in the public sector.
This meant Phumeza received ineffective treatment for drug-sensitive TB through state care before learning she had XDR-TB. In addition she also suffered serious side effects that affect many people on DR-TB treatment, including permanent deafness.
By the time Dr Jennifer Hughes, MSF’s TB doctor in Khayelitsha, started treating Phumeza in May 2011, nine months had passed since she was on the unsuccessful treatment for drug-sensitive TB in the public sector.
Dr Hughes says Phumeza’s story illustrates the two biggest obstacles to treating drug-resistant TB effectively: the lack of diagnostic tools to detect XDR-TB earlier, and the limited range of drugs to treat it.
“The delay in Phumeza’s treatment was due to real difficulties in diagnostics available to doctors today and it disadvantages patients like Phumeza. We really need better diagnostics if we want to save lives and fight DR-TB,” says Dr Hughes.
“Given such a limited shot at success with the current drugs, it’s also crucial that we find and use better drugs for patients like Phumeza.”
Hard to swallow
For patients trying to beat drug-resistant forms of TB two years of treatment is a gruelling and painful affair.
“I had to take at least three medications, more than 20 pills daily, supplements and injections. It is just too much. Many other patients will agree,” says Phumeza, who started referring to her pills as ‘little bastards’ because their side effects made her feel so awful.
New hope, at a high price
One of the drugs that Dr Hughes attributes to Phumeza’s cure is a high-strength antibiotic called linezolid, which Phumeza received as part of MSF’s 'strengthened regimen' programme in Khayelitsha.
The programme provides XDR-TB patients with individually tailored combinations of new, more effective, available drugs to improve on the current standard regimen for XDR-TB.
While MSF data has shown promising results in using linezolid as part of an XDR-TB regimen, the drug is not widely available as a TB medicine in South Africa for two reasons: it is extremely costly because it is under patent; and the available product is not registered as a DR-TB treatment in South Africa, making it difficult to access through public TB treatment facilities.
Pharmaceutical company Pfizer is the sole supplier of linezolid in South Africa because it holds multiple patents on the drug.
At the prices Pfizer charges, a two-year-long course of treatment for a DR-TB patient like Phumeza, costs over EUR 35,862 / ZAR 493,000 per patient when purchased through the private sector.
More affordable and quality-assured generic versions of linezolid are available in other parts of the world, but despite of MSF’s calls for action, the Department of Health has not yet tried using available legal flexibilities under international trade agreements to overcome patent barriers to access less expensive linezolid.
During her two-year journey, Phumeza blogged on MSF’s TB&ME blog about the daily frustrations and numerous setbacks that she faced along the way.
“The support from people who followed my blog kept me going. They read my blog, they kept praying for me, encouraging me with motivating comments. That kept me hopeful that I’d be free from XDR-TB,” Phumeza says.
Back to her future
Now being cured from XDR-TB, Phumeza can resume her dreams of studying further, though her battle with XDR-TB has seen her focus change. “Having this experience with XDR-TB has changed me. I’m not the same person I used to be. I want to register at university again. I know it’ll be difficult because of my deafness. The business world will not accept me, but maybe I can follow a course in healthcare.”
Find out more about MSF's work with tuberculosis
Read Phumeza's TB&ME blog