I am Xolelwa Joni who is a former XDR patient. I am one of South Africa's lucky survivors of XDR and live in Eastern Cape at Braelyn location which is situated in East London.
It has finally been confirmed that I have completed my XDR treatment on the 31st of January 2014. Those came as great news because it came into my head that I will no longer be irritated by taking the huge amount of pills and several injections again.
Yes, there might be an ease on my state of health but there are many other people in South Africa ( in Eastern Cape) who are still suffering XDR and they are still dying now and again due to lack of balance on patient accuracy treating.
In as much as there are some policies that advocate for better health for all, there are still many challenges that XDR TB patients go through and those challenges enhances the chance of TB to be deadlier.
The challenges that I can note are;
a). Longer waiting list for patients to start being admitted in the TB hospitals.
b). Lack of feedback as to when the patients will start getting the new invented drug that is said to be accurate as far as XDR treating is concerned.
c). Chances of reinfection in TB hospitals are high as patients live in environments where they are likely to cough and reinfect one another and that promotes the likelihood for their TB level not to convert.
d). Poverty is still an enemy that promotes the risk of being infected with TB as residents living in informal settlements lack healthy food to boost their immune system, something that leads on them to be compromised when illnesses approach.
e). Stigma is also one of the challenges that lead on TB patients to end up being discriminated in their own communities and even families. That results in some patients not to want to continue with treatment as they see it to be lowering their dignity.
The above mentioned challenges are situations that can be changed should our government correct them and really give a positive change to people's lives. But if things remain the same, more deaths will occur as it did to my twin sister Xoliswa Joni who was also an XDR TB patient. My twin sister passed away on the 5th of January 2014. What became surprising in her situation is that all the time she was at Fort Grey Hospital her sputum never converted into negative, she always came positive for the past four years. As my twin sister was at home in Braelyn but still taking her medication, it was then that she first converted and that gave us at home the impression that it is highly possible that Xoliswa was being reinfected again and again all these years while she was in hospital premises. We had hope as a family after seeing the good news and hoped that all will finally turn out good. I guess that was just one of the dreams that don't come true because we are not with Xoliswa today.
Last year in November I was one of the ambassadors from South Africa who went to France on the 44th Union World Conference on Lung Health with the likes of Phumeza Tisile who is also an XDR survivor from Cape Town. I shared with the world the challenges that I faced with XDR and the challenges that I was observing on people around myself.
One of the major concerns that I had was the unavailability of the new XDR TB drug in my local hospitals. Bedaquiline and Lynezollate are available but there are longer waiting periods to give to patients. My twin sister Xoliswa died while we knew for sure that there was hope that she can also be cured but due to the inconsistency of our provincial health departments the new XDR drug was still not available in the Eastern Cape province and was only available in Cape Town that is in our Western Cape province. While that is still the case, patients are continuing to die in our local TB hospitals and the situation is raising major concerns and questions as to how many deaths should occur for our government to stand up tall and fully deal with this devastating situation.
Today I am angry and frustrated because my twin sister spent most of her time while she was sick at Fort Grey hospital but clearly she did not get proper help. Last week on the 8th of February 2014 we were burying a close friend who was also hospitalized for all his time of MDR treatment but at the end he died. The mentioned are not the only deaths that have occurred between January and February 2014 alone, there are several other families that have lost their relatives as well. We keep on preaching that this infection is curable and yes it is, but how many deaths should occur for our government to start putting a foot down and say NO to the infection and the reinfections that occur in hospitals.
I am still standing today and I am still voicing out so that TB patients in South Africa, in all provinces can get a high quality treatment equally. It is very odd while understanding that we live in a democratic state to note that equality is still not reached even after 19years of our so called liberation. Our national health department and political policy developers should start arguing for consistency in all our provinces in South Africa so that everyday the number of possible deaths can be reduced.
The struggle for lung health should keep going for the sake of our current generation and the TB free future generation.