They lie there on a small saucer—five bright yellow capsules, a big white tablet, and a brown capsule. And with one final gulp, Phumeza Tisile swallows the last of the roughly 20,000 pills she has taken over the past two years to cure one of the most severe forms of drug-resistant tuberculosis: extensively drug-resistant TB (XDR-TB).
It’s fair to say Phumeza, a 23-year-old South African who lives in the Khayelitsha township, beat the odds. Because the medications used to combat TB are generally outdated, ineffective, and liable to cause severe side effects, many XDR-TB patients do not even finish the lengthy treatment regimen, and only 20 percent of them are cured. What’s more, Phumeza was misdiagnosed at first because the diagnostics used in her country—and indeed, in most countries—struggle to identify drug-resistant strains of the disease.
“I never thought this day would come,” Phumeza says, beaming, recalling the days when she first began treatment, when she could barely speak and had to drop out of school. Now, though, “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.”
So she took three medications, more than 20 pills, every day for two years, along with other supplements and injections. She also went deaf—a not-uncommon side effect—but carried on nonetheless.
Dr. Jennifer Hughes, MSF’s TB doctor in Khayelitsha, started treating Phumeza in May 2011. While her cure is certainly cause for celebration, Dr. Hughes says her story illustrates the two biggest obstacles to effectively treating drug-resistant TB: a lack of diagnostic tools to detect the disease early and the limited range of drugs to treat it.
“We really need better diagnostics if we want to save lives and fight DR-TB,” she says. “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.”
Phumeza hopes to register for university once again, possibly pursuing health care as a career, and a way to help others as she was helped. She’s also been a very active member of MSF’s “TB and Me” campaign, which was designed to show the public at large—and drug and diagnostic researchers and developers—how brutal the current treatment options are for patients and their families alike. She was also a lead author on MSF’s “TB Manifesto,” which calls for universal access to treatment now, better care options and diagnostics in the future, and more investment around TB in order to make that happen.
At first, only TB patients and people who cared for them could sign the manifesto, but MSF recently re-launched it so anyone who supported the message and those behind it could sign. Please visit blogs.msf.org/tb/ to read more about Phumeza and others taking part in the “TB and Me” campaign, and please also visit msfaccess.org/TBmanifesto to support their efforts to survive this taxing, deadly disease, and to call for better options for patients in the future.
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