This speech was made by former XDR-TB patient Phumeza Tisile, from Khayelitsha, on October 17 in Pretoria at both a press conference and a rally organised by the Fix the Patent Laws campaign.
“My experience with TB was rather a very long journey. Firstly, I was late diagnosed. Secondly, I was given the wrong medication for a long time. It can only be a miracle that I am still alive and cured.
Well, on the diagnosis part, I can’t really blame anyone, ‘coz at the time the GeneXpert machine wasn’t available here in SA.
So at first, they diagnosed me with “normal TB,” well surely the tablets didn’t work. Then I was told I’m multi-drug resistant; from the MDR-TB drugs, it is rather a hellish journey. The side effects are a nightmare. From having skin problems, vomiting each and every day, developing some ungodly pneumothorax, going through surgery, getting deaf (thanks so much to that kanamycin injection).
Having to swallow around 20 tablets every day for three years, that is close to 20,000 drugs, all sorts of sizes, big, small, all sorts of colors from blue to yellow, stinking lil horrible things. And you have to be very brave to stand up to all of this. The fact that I got deaf due to treatment didn’t by any chance discourage me to stop taking the meds. I saw many dead bodies while I was in BCH [Brooklyn Chest Hospital, in Cape Town]and I made it a dare that I won’t exit those gates in a body bag.
So stronger drugs that will be less toxic and very easy to take will make a huge difference. I don’t know…combine these into one, [with] less side effects. If I had known that kanamycin will destroy my hearing I would have not dared taken it. Point is the current drug-resistant treatment is hellish, horrible, stinking lil bastards.
From all of these side effects I managed to pull through. Linezolid was the key player in all of this, without it not sure if I would have been here. Well, not many patients are lucky enough to get the linezolid, since it is too expensive for one patient. Each drug cost close to R700 and I mean 1 tablet. Make linezolid cheaper so that many patients can have access to it. Out of 300 [patients in Khayelitsha that MSF would like to treat with linezolid], only 22 are able to get it from MSF, what about the rest? Don’t they also deserve it!”