Field Notes - January 2014

Page 1

YOUR SUPPORT IN ACTION

Volume 15

Number 1

2014

Field notes

© Sydelle WIllow Smith

End of a journey with XDR-TB

T

he medicine lay on a saucer – five yellow capsules, a big white tablet and a brown capsule. With one gulp Phumeza Tisile, 23, put an end to her daily ritual of the last two years. She swallowed the last of 20,000 pills she had taken to cure a severe form of drug-resistant tuberculosis: extensively drug-resistant TB (XDRTB). When it was done she cried tears of joy. “I never thought this day would come,” Phumeza said, beaming. “I’ve beaten XDRTB! 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.” Phumeza beat XDR-TB against all odds. The disease has a cure rate below 20 per cent. Before being treated by Médecins Sans Frontières/Doctors Without Borders (MSF), it took a long time to diagnose Phumeza’s XDR-TB using the tests available in the public health system. Phumeza received ineffective treatment before learning she had XDR-TB. She also suffered serious side effects, including permanent deafness. By the time MSF TB doctor Jennifer Hughes started treating Phumeza, she had been under-

going ineffective treatment for nine months. Phumeza’s story illustrates the two biggest obstacles to treating drug-resistant TB: the lack of diagnostic tools, and the limited range of drugs available to treat it.

Affordable, quality generic versions of linezolid are available in other parts of the world. But despite MSF’s calls for action, South Africa has not made use of legal mechanisms that would allow access to generic linezolid.

“We really need better diagnostics if we want to save lives and fight drug-resistant TB,” said Dr. Hughes. “It’s also crucial that we find and use better drugs for patients like Phumeza.”

Phumeza wrote a blog about her two-year journey. “The support from people who followed my blog kept me going. They kept praying for me, encouraging me.”

For patients trying to beat drug-resistant TB, the two years of treatment are gruelling. “I had to take more than 20 pills daily, supplements and injections. It is just too much,” said Phumeza.

Cured of XDR-TB, Phumeza can pursue her dreams again. “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 study healthcare.”

MSF’s program in South Africa provides XDRTB patients with individually-tailored combinations of new, more effective drugs. One of the drugs that helped cure Phumeza is an antibiotic called linezolid. MSF has seen promising results with linezolid, but 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 it is not registered as a DR-TB treatment, making it difficult to access. A two-year course of treatment for a patient like Phumeza costs half a million rand (over $50,000 Canadian).

Phumeza Tisile and Dr. Jennifer Hughes coauthored a DR-TB manifesto that calls for governments, drug companies, researchers and the TB community to step up the fight against DR-TB. Sign on to support the manifesto at msfaccess.org/TBmanifesto/. Read Phumeza’s story and the story of other TB patients in their own words at blogs.msf.org/tb/.


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