NB: We apologise that we cannot attach the audio for this transcript as it’s a much bigger file than allowed.

NOMASONTO SHABA: They don’€™t want me to go home. They say I’€™m still infectious. For two years in hospital, but they say I’€™m still infectious! For two years! I didn’€™t go out for two years!

KHOPOTSO: Frustration is audible in Nomasonto Shaba’€™s voice. She is the first person in all of Gauteng province to be diagnosed with the virulent strain of what is known as Extremely Drug-Resistant Tuberculosis (XDR TB). In September 2006 a Johannesburg daily ran a story of a woman who had run away from the provincial drug-resistant TB treatment facility, Sizwe Hospital, based in Johannesburg east. The report said a woman had a deadly form of TB and was a danger to her family and all those she could come in contact with. The piece began what would be an unprecedented media frenzy around a single patient.

NOMASONTO SHABA: It was difficult because I heard from radio ‘€“ from YFM. It was 09h30 (on) the news. They said there was this lady in Sizwe Hospital who ran away.

KHOPOTSO: Almost in tears and breathing heavily with a mask over her mouth and nose to avoid spreading the bacteria to others, Shaba insists that she didn’€™t flee from the hospital.

NOMASONTO SHABA: I didn’€™t run away. I signed the RHT. Dr Alicia Delinsky knows that. And the signature is there in my file. I said, ‘€œbecause the medication is not (she clears her throat) helping, can I go home’€? They said: ‘€œYes. You can go home and take the medication there’€. And then, I went home. I stayed, maybe, for three weeks. And then here is the news – TV, newspaper(s) ‘€“ they said ‘€œthere is this lady (who’€™s) running away from the hospital. She’€™s very dangerous. She has XDR (TB)’€. So, people started to run away from me’€¦ It was very painful.                

KHOPOTSO: She is furious that the hospital didn’€™t inform her of her condition before they went to the media. The form that she signed to leave the hospital, called the RHT or Refusal of Hospital Treatment form, is brought into effect when a patient refuses to stay in hospital for further treatment. The hospital management now concedes that Shaba didn’€™t actually run away. Cecilia Mngomezulu is the manager of nursing services at Sizwe Hospital.

CECILIA MNGOMEZULU: She practised that right to say, ‘€œI don’€™t want to be hospitalised’€. So, she signed Refused Hospital Treatment. Then it was not yet known that she was an XDR (patient). She signed herself off under permission of the doctor.

KHOPOTSO: Dr Rianna Louw took up the post of Chief Executive Officer of the hospital in April last year.  

Dr RIANNA LOUW: She refused treatment, but (was) then diagnosed as an XDR (patient). And I think since the emergence of XDR (TB) then was really quite a crisis, we realised that further extension in terms of the spreading of the disease can happen. And I think that is why, rightfully, in terms of the policy it was then decided that she needs to be admitted again.  

KHOPOTSO: The hospital and the Gauteng Department of Health turned to the legal system to ensure Shaba’€™s re-admittance. Signs of Extremely Drug-Resistant or XDR TB in South Africa first surfaced in early 2005. It all started when a medical officer working at the Church of Scotland Hospital in rural Msinga, in KwaZulu-Natal, noticed that many patients with tuberculosis were not responding to treatment for Multi Drug-Resistant TB. The national Department of Health then asked the University of KwaZulu-Natal to investigate the matter and a study was initiated. In a one year period 53 patients were classified as having Extremely Drug-Resistant TB. The patients also had AIDS. With this form of tuberculosis, patients are resistant to three or more of the six second line drugs used for the treatment of Multi Drug-Resistant TB. Multi Drug-Resistant TB in turn occurs when a patient has failed to be cured of normal or primary TB using the standardised treatment protocol of six months. Failure of this initial treatment can be due to a number of reasons, says Dr Xavier Panilabal, head of Clinical Allied Services at Sizwe Hospital.    

Dr XAVIER PANILABAL: It can be a problem with the patient’€™s adherence, where the patient fails to stick to the treatment policy. It could be a problem with defective drug delivery ‘€“ problems with the constant supply of medicines; or it could be a problem with effectiveness of medicines.  

KHOPOTSO: Panilabal’€™s colleague, Dr Louw adds that the main culprit in this first time failure of TB treatment is when patients do not stick to the treatment policy.

Dr RIANNA LOUW: The big challenge and the big place where the system is failing is where patients are not adhering’€¦ Seven percent of our patients in Gauteng, specifically, from the information that we have of last year are still failing and defaulting, despite the fact that we’€™ve got drug supply 100% and also the DOT-support and the treatment available. At the end of the day, I think we need to improve on our defaulters. Although the information that I received from the provincial office is that we did manage to decrease with 1 % the defaulter rate from 7 % the previous year to 6 % last year, there’€™s still a lot for us to do to ensure that we reduce that. Because I think that is where the system is failing ‘€“ it’€™s in terms of patients still defaulting.

KHOPOTSO: While you can get drug-resistant TB from defaulting on treatment, you can also get it as your very first episode of TB.

This is because lung TB is an air-borne disease and all strains can be picked up through breathing. That’€™s why it’€™s important in the interests of good public health that people must finish their treatment. In Shaba’€™s case, it’€™s not clear what her TB history is. What is known, though, is that she is not a first time TB patient.

NOMASONTO SHABA: It’€™s not my first time in hospital. I was diagnosed with TB (before). I stayed at SANTA for six months. I came here in August. When I came out of SANTA, Benoni, they said I have MDR (TB). And then they started treatment from 13 March 2006. After that (in) September, here comes XDR (TB)’€¦ I don’€™t know how.  

KHOPOTSO: Unlike primary infection, Multi Drug-Resistant TB is difficult to treat. It takes additional medicines with more side-effects. The treatment is also more expensive and takes even longer to treat ‘€“ about 18 to 24 months. With the Extremely Drug-Resistant strain, it can be much longer than that. Shaba’€™s life has completely come to a stand-still because of this. She is stressing from not seeing her family as often as she’€™d like to coupled with the fact that she has now lost her job due to extended absenteeism.

NOMASONTO SHABA: Two years in hospital’€¦ No income. You just draw the money, draw the money’€¦ It’€™s been a long time here’€¦ Now I’€™m not working’€¦ They pay you for six months. After that they retrench you and give you your money’€¦ My child is staying in Nelspruit’€¦ She used to visit me here. But now it’€™s too far. She can’€™t come here. And we don’€™t have money. I do have a problem.

KHOPOTSO: Agitated, she pours her emotions out.

NOMASONTO SHABA: I don’€™t need to stay here for this long ‘€“ two years! No income ‘€“ nothing in the hospital! Do you understand my situation? I’€™m having one mother. I don’€™t have a dad. We’€™re two. My sister died. She has to take care of two children and one of mine’€¦ The situation is difficult. And my mother has to come here every month to buy me soap, everything’€¦!

KHOPOTSO: Alicia Molatedi-Nefhale is another patient at Sizwe Hospital.

ALICIA MOLATEDI- NEFHALE: I’€™m an XDR (TB) patient and I was diagnosed in January last year. I’€™ve been in the hospital since 2006, September 28’€¦ I’€™ve been taking medication from 2005 until today. But then I was an MDR (TB) patient. (I was) discharged on the 17th March, 2006, then admitted again on September 28, 2006. Then I stayed for four months before I was diagnosed with XDR (TB).        

KHOPOTSO: This woman is known as the spokesperson for Sizwe patients.

ALICIA MOLATEDI-NEFHALE: They don’€™t allow us to go out at all’€¦ Sometimes we wonder as patients of Sizwe Tropical Disease whether, are we human beings or animals? We’€™re very scared for our lives. We’€™re also scared for our kids because have no one to take care of (them). We are people who were working. We don’€™t know our situation when we go out of this hospital. Are we going to go back to our working place(s) or we’€™re still going to look for jobs. Some of the people, their marriages have been destroyed because of this.

KHOPOTSO: While XDR TB is difficult to treat and to cure, it would seem that the length of time that Molatedi-Nefhale has spent at this hospital has done more damage to her. Hope that she will test negative for the bacteria is all gone.

ALICIA MOLATEDI-NEFHALE: There is no cure for XDR (TB). You understand? There is no cure. They are trying to get a combination’€¦ A combination’€¦ If you take that word ‘€œcombination’€, that means they are taking that tablet and that tablet (and) mixing to see if it works. Oh, ‘€œthis is not working. Let’€™s take that tablet and that tablet’€. Doing that on a living human being’€¦

KHOPOTSO: She says her family life has also taken a hard knock.

ALICIA MOLATEDI-NEFHALE: I have four kids. I don’€™t know if I get discharged will I get them at home or I will have to go and find them on the streets. I have no idea of that’€¦ I have a young boy that I gave birth (to) last year on the 23rd, March. I saw that child after nine months. I wasn’€™t allowed to see that child from the day he was born until the day I got the pass out (in) December. And since December, I haven’€™t seen my boy. Do you think from a mother who gave birth to a child is it normal ‘€“ not to see your child? The sister just comes: ‘€œYour child is a boy. He’€™s very beautiful’€. I wasn’€™t allowed at all to get near him. The only thing I saw were the photos.        

KHOPOTSO: Hospital management responded to the frustrations of the patients. Here’€™s Dr Rianna Louw.    

Dr RIANNA LOUW: I think that one needs to recognise that it is policy for the hospital to admit all MDR and XDR (TB) patients. It’€™s not a decision of Sizwe Tropical Disease Hospital’€¦ It’€™s a policy that we’€™re implementing and this policy of (the) Gauteng Department of Health is according to the WHO and the national guidelines. But I think what is evident from the patients is the frustration levels’€¦ We’€™re also acknowledging that people are very frustrated because of the fact that they’€™ve got a lengthy stay in the hospital. We also need to recognise, as the patients also mentioned, that they have been receiving TB treatment before. When people default, unfortunately, it becomes MDR (TB) and MDR (TB) could become XDR (TB). And I think this long length of also taking medicine is also a frustration for the patients. Nomasonto mentioned that she came from SANTA Hospital where she was admitted for TB and then, became MDR, so then was transferred to Sizwe Hospital. As management we recognise those frustrations in terms of the challenges that these patients face.      

KHOPOTSO: What struck me about the two patients we spoke with, Nomasonto Shaba and Alicia Molatedi-Nefhale was that the pair doesn’€™t look ill at all. They actually look well fed and healthy. That is probably the most important reason why they can’€™t understand why they’€™re still being kept in hospital. The centre management is also having a difficult time convincing such healthy individuals that even though they look well, they are not yet ready to go home.

Dr RIANNA LOUW: Our patients respond clinically. Our patients in the hospital are actually doing well on the treatment. I think the frustration for them is the fact that they are not responding in terms of culture. So, they remain infectious. But the clinical condition on both these patients did certainly improve’€¦ It’€™s just unfortunate that the culture is not negative and, therefore, they are still infectious and cannot be discharged.      

KHOPOTSO: In order to be discharged, patients need to have a culture that is negative   for drug-resistance. A culture is a process that involves a patient coughing up sputum, which is then tested in a laboratory. If, after six weeks, the culture tests positive, the patient will remain in hospital irrespective of their clinical signs. But if two consecutive cultures test negative, the patient is then discharged and will take treatment on an out-patient basis.

Dr RIANNA LOUW: Clinically, if we say that people are responding we are saying that their symptoms and signs get better. So, if they coughed before quite a lot, the cough decreases. If they’€™ve lost appetite, which is one of the symptoms, the appetite will increase. We monitor the weight, so clinically if we say somebody is getting better, then they’€™re improving in terms of their weight’€¦ It’€™s just that unfortunately the culture is not responding, which means’€¦ when you send their sputum to the laboratory it is still positive. So, that means in the culture there is still a growth of the germs, which actually means that those patients are still infectious and, therefore, they cannot be discharged.    

KHOPOTSO: So in essence, even if they are well, a negative culture result is what stands between Nomasonto Shaba and Alicia Molatedi-Nefhale’€™s freedom. It is Shaba’€™s strong belief that she will attain that freedom. When she was admitted she did not respond to seven drugs. Now she’€™s only resistant to six of the medicines.

NOMASONTO SHABA: (I was) resisting to seven drugs, (now) to six. Do you see the promotion? I’€™m going until five, until four, until I go out of the hospital. I pray to God everyday that I will come out of this hospital and go home.              

KHOPOTSO: But is there a cure for XDR TB?  

Dr RIANNA LOUW: Because the first case was only in 2006, it’€™s too early for us to claim a cure in terms of XDR (TB). But, I think if we give information that 11 patients were already successfully discharged we hope that those patients at the end of the day, as early conversion, is already an indication of a possible cure. So, we hope that at the end of the day we will be able to claim a cure for those 11 patients. But since the treatment is for 24 months’€¦ we will only be able to say at the end of 24 months if this is failure or will we be able to get them cured at the end of the day.

KHOPOTSO: The national cure rate in South Africa for Multi-Drug Resistant TB stands at 50%. This falls way short of international targets of 80%. In light of this, and influenced by the fact that there are no new drugs to treat the Extremely Drug-Resistant strain of TB, cure rate expectations for XDR TB are much slimmer.      

Dr RIANNA LOUW: We are not sure how the prognosis of XDR (TB) compares with MDR (TB)’€¦ You expect a 50% cure rate for MDR (TB)’€¦ Since we’€™re not at the end of the 24 months, it’€™s difficult for us to project what the cure rate for XDR (TB) would be. You would imagine that it would be lower because of the fact that with MDR (TB) already, although we’€™ve got national guidelines, you’€™re restricted in terms of the medicine that can be given to patients, so much more for XDR (TB). There are no many more drugs that you can add to the regimen. Once patients become resistant to the MDR (TB) medicine then you’€™re left with only a few drugs’€¦ There are no national standardised protocols. We treat them as individuals looking at the pattern of the drugs that they’€™re resistant for and then we make a decision.                            

KHOPOTSO: To date, a total of 48 people have been diagnosed with XDR TB in Gauteng. Although less than the number seen in KwaZulu-Natal following the Tugela Ferry outbreak, the phenomenon is still a scare.    

Dr RIANNA LOUW: From the 48 patients’€¦ currently we’€™ve got 20 patients in the hospital. Three of the patients unfortunately died before they were admitted at Sizwe Hospital. We had 11 deaths from the 48’€¦ We have discharged already 11 patients that converted. These patients became non-infectious after two consecutive growth investigations were done. Those patients were discharged and they take their medicine successfully on an out-patient basis. One patient unfortunately absconded to Lesotho. We had three patients that we transferred to KwaZulu-Natal because they were originally from KwaZulu-Natal.

KHOPOTSO: Worldwide, drug-resistant tuberculosis, let alone XDR TB, is on the increase. The 246-bed Sizwe Hospital is not experiencing a better trend.      

Dr RIANNA LOUW: We are, on average, admitting and having in our hospital about 200 MDR (TB) patients on a daily basis’€¦ In terms of out-patients we see about 300 MDR (TB patients) on a monthly basis, that means about 15 on average, per day’€¦ When I started here in April last year, on average we had about 180 patients on a daily basis. At this moment in time we are having more than 220, of which 200 are MDR (TB). So, in terms of the trend we are definitely seeing an increase in MDR (TB).            

KHOPOTSO: New data from the World Health Organisation shows that South Africa has one of the worst epidemics of drug-resistant TB. We speak to Dr Panilabal once again.

Dr XAVIER PANILABAL: We used to have around 6000 new cases of MDR (TB) every year. That was in 2004. (That was) national. But the latest WHO report says we have about 8000 cases a year in South Africa now’€¦ And when you look at the global proportion of resistance among TB, MDR (TB) accounts for about 4.8 % of TB cases. And in the South African situation’€¦ when it comes to new patients we have 1.8% of MDR TB cases every year… And if you are looking at previously treated TB patients, it comes to about 6.7%.

KHOPOTSO: Sizwe Hospital’€™s Dr Rianna Louw says it’€™s important to remember that the premise of TB treatment is to avoid the looming public health threat of drug-resistant TB.

Dr RIANNA LOUW: MDR and XDR (TB) is preventable. So, for us to really manage MDR and XDR (TB) it needs to be prevented. So, for that it is very important and crucial that when patients start their treatment the first time, they need to complete it so that it does not go into MDR and XDR (TB).                                  

KHOPOTSO: As for Nomasonto Shaba and Alicia Molatedi-Nefhale, they will remain in Sizwe Hospital until they show no sign that they can infect others. It would seem like it’€™s a tough balancing act that health facilities have to perform. On the one hand they try to give patients the best possible care, while on the other hand they want to ensure that the disease does not spread to more people.