It was while she was in a clinic in Cape Town, South Africa, enduring the complicated, agonizing treatment for extremely drug-resistant tuberculosis, that Phumeza Tisile began to question why “there weren’t better medications that had less side effects.”
In 2010, soon after her initial diagnosis with multidrug-resistant TB, or MDR-TB, Tisile had received a painful injection of the drug Kanamycin. It had caused her to go deaf essentially overnight, but did not stop the disease’s progression. She had not even been told that hearing loss was a potential side effect.
Only after she was finally cured, more than three years after starting treatment, did Tisile became aware that the drug company, Johnson & Johnson, had actually just developed a safer treatment with fewer risks. The treatment, bedaquiline, had only gained approval from the U.S. Food and Drug Administration, or FDA, in 2012. Had it been available to her it would have prevented her hearing loss and cut her daily pill count from 25 to fewer than 10.
She also came to understand the tangle of complications that made the treatment inaccessible to people across South Africa and in other parts of the world.
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