Fix The Patent Laws

Speech Transcript, from Former XDR-TB Patient Phumeza

Posted on | October 23, 2013 | No Comments

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!”

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  • About the Campaign

    fix the patent laws
    Fix the Patent Laws is a campaign co-founded by SECTION27, Treatment Action Campaign (TAC) and Doctors Without Borders (MSF) in 2011. Since then, the coalition has grown to include 38 other organisations fighting together to push South Africa to amend its patent laws to prioritise public health. Through this blog we will highlight how amending South Africa’s Patents Act 57 of 1978 will reduce the cost of medicines, improving the health and saving the lives of millions of South Africans.

    The members of the Fix the Patent Laws Campaign are as follows: Treatment Action Campaign (TAC), Doctors Without Borders (MSF), SECTION27, the South African Non-Communicable Diseases Alliance (SANCD Alliance), DiabetesSA, EpilepsySA, Marie Stopes South Africa, Stop Stock Outs Project (SSP), South African Depression and Anxiety Group (SADAG), Cape Mental Health (CMH), the South African Federation of Mental Health (SAFMH), Schizophrenia and Bipolar Disorders Alliance (SABDA), as well as the following members of the Cancer Alliance and Advocates for Breast Cancer: Breast Course 4 Nurses, Breast Health Foundation, Cancer Association of South Africa (CANSA), Cancer Heroes, Can-Sir, CanSurvive, Care for Cancer Foundation, Childhood Cancer Foundation of South Africa (CHOC), Hospice Palliative Care Association (HPCA), Igazi Foundation, Look Good Feel Better, Love your Nuts, Lymphoedema Association of South Africa (LAOSA), Men’s Foundation, National Council Against Smoking, National Oncology Nursing Association of SA, Pancreatic Cancer Network of SA (PanCan), People Living With Cancer (PLWC), Pink Trees for Pauline, Pink Phoenix Cancer Foundation, Pocket Cancer Support, Project Flamingo, Rainbows and Smiles, Reach for Recovery, South African Oncology Social Work Forum (SAOSWF), The Pink Parasol Project, The Sunflower Fund, Vrede Foundation and Wings of Hope.

  • Read the TAC and MSF campaign pamphlet

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