It is 8am on a Wednesday and the final rush of people going to work and taking children to school is dying down. Hezekiel Nyoni (38) greets the Somali shopkeeper as he strolls past the tuck shop near his Tekwane South house, an RDP settlement outside Mbombela in Mpumalanga.
He has an appointment at the Barberton TB Specialised Hospital and is making his way to the spot where the transport organised by the health department will pick him up. But he is not certain whether that will happen.
"The transport is unreliable; sometimes it does not come at all," he says.
Nyoni has multidrug-resistant tuberculosis (MDR-TB), an aggressive form of the disease caused by bacteria that are resistant to the drugs used to treat "ordinary" TB. It is far more complex and expensive to treat than normal TB.
Nyoni has to make the 70km trip to Barberton for medical checkups and to collect his MDR-TB treatment every month because it is the closest government hospital that provides it. It is also one of only five hospitals in the province that provide this service.
He was diagnosed with TB at the end of 2010 and started the standard six-month treatment in early 2011. He completed the treatment in the middle of 2011. But at the beginning of last year Nyoni suffered a setback – the TB had returned as MDR.
Nyoni was devastated, especially after being told that he would be hospitalised and would have to take treatment for up to two years. He already had a hard time managing treatment of the normal TB.
"It was very difficult to accept I had MDR-TB. I did not understand because I took my pills as the doctor told me to. I even stopped drinking and smoking to concentrate on my health, and now this," he says.
MDR-TB can also develop when treatment is not carried out as prescribed by the doctor.
Nyoni did not tell any of his friends about his disease, nor anyone in the community except his family. He feared outsiders would discriminate against him "as people often associate TB with HIV".
According to the South African National Aids Council, more than 70% of TB patients in the country are also infected with HIV.
"I have seen how a relative was isolated and discriminated against by friends and the community after he spoke openly about having developed TB," Nyoni says.
MDR TB in hospital
He spent four months in the Barberton hospital – the health department's treatment policy requires MDR patients to receive daily injections until they have two negative TB culture tests for two consecutive months.
According to the national health department's director for TB, Norbert Ndjeka, the negative results are evidence that a patient is no longer infectious.
Once MDR patients have converted from positive to negative TB cultures they have to continue taking drugs for about 18 months.
Although patients such as Nyoni were previously required to stay in hospital until they had two negative TB cultures, some are now discharged before that if, according to Ndjeka, they "are in good shape" and have negative smear microscopy results (a much faster and cheaper but less-reliable test in which sputum is looked at under a microscope for active "TB bugs". If none is found the patient is considered less infectious).
Like Nyoni, they receive the remaining injections at their local clinics.
This is because the government's decentralisation TB policy, which came into effect in August 2011, aims to get MDR patients to collect their treatment and access medical help as close as possible to home and so decrease hospitalisation time.
But the implementation of the policy has been slow and this has had dramatic consequences for patients such as Nyoni: although he was able to get his injections from his local clinics, he could not collect his pills from there. This is why he has to travel to Barberton once a month for 18 months.
"Some patients have to return to their dedicated MDR-TB hospitals for follow-up care because local clinic staff have not yet been trained in the management of MDR-TB. In some instances training was done, but logistics are not in place to cater for MDR-TB patients at clinic level," says Ndjeka. "This is particularly true in rural areas of Mpumalanga, Limpopo, North West and Gauteng; and patients therefore have to visit hospitals, where doctors with specialised skills are available."
According to the Mpumalanga health department, Nyoni is one of 884 MDR-TB outpatients who have been going for monthly checkups since 2011 and collecting their drugs at the five hospitals across Mpumalanga that specialise in TB, including Barberton TB hospital and state hospitals in Standerton, Emalahleni, Ermelo and Hazyview. Ndjeka estimates that about 20% of these patients would since have died.
Because patients have to travel long distances to access treatment, the health department provides transport. But today the transport didn't turn up.
After waiting for two hours, Nyoni decides to make the trip by taxi.
"Imagine if I did not borrow money from my neighbour last night: I would be stranded," he says. "This is what we have to go through as MDR-TB outpatients for treatment. Some patients in Nkomazi haven't taken treatment for two months now because they can't get to Barberton. They [the department] must bring treatment to our clinics because they are failing to provide transport for all of us."
TB epidemic in SA
According to the World Health Organisation, South Africa has the third-highest number of TB cases in the world after India and China and the fifth-highest number of cases of drug-resistant TB. Statistics South Africa reported that TB is the leading cause of death in the country, accounting for 12% of all deaths.
Ndjeka says more than 70 000 MDR-TB cases have been diagnosed by the National Health Laboratory Services in South Africa since 2004. But only 6 494 of the 15 419 MDR-TB cases diagnosed last year began the appropriate treatment, because there were only 2 500 beds available for such patients in the country's TB hospitals (some don't admit MDR patients).
"Before 2011, we had one or two TB-centralised hospitals per province, which resulted in a low treatment success rate of 42% in 2007, and 48% in 2008," he says.
He says the success rate could be improved to 60% over the next four years if the department manages to establish one MDR treatment site in each of its 52 health districts.
Ndjeka admits that treating MDR-TB patients in centralised hospitals has not been effective and has encountered many social and economic challenges over the years.
Patients have been obliged to leave work and their families, for example, and some have refused to be admitted and have become a health risk. The shortage of beds has led to delayed treatment, and there is a high risk that infection will occur in wards that are not properly ventilated.
Preliminary results of a study by Harvard Medical School, conducted on MDR-TB patients in rural KwaZulu-Natal in 2012, show that patients who undergo treatment as prescribed present a low risk of infecting those around them after 24 hours.
The lead researcher, Edward Nardell, said MDR-TB patients already on treatment should not be hospitalised at all. He said treating patients closer to home "is highly effective, less expensive than hospitalisation and poses no threat to the community once patients are on effective treatment".
Eric Khumalo is the former head of HIV and TB at Rob Ferreira Hospital in Mbombela. He says the department has been "dragging its feet" on implementing its decentralisation policy and would have to speed up the process of taking treatment to communities if it wants to curb the spread of MDR-TB.
"There is a lack of urgency from the government on decentralising treatment. The policy was approved in 2011. It makes no sense that there isn't a single satellite site or clinic that treats MDR-TB in this province," he says.
"Most of the TB hospitals in the country do not have enough isolation rooms and have poor infection control, exposing patients who are hospitalised to more resistant TB strains like extremely drug-resistant TB [which is even harder to treat than MDR-TB] and the totally drug-resistant strain."
According to Ndjeka, treating patients closer to home will help to ease the burden on the department, but a shortage of funds, skills and infrastructure has delayed the decentralisation process.
"We are dealing with infectious people here and we can't just treat them in clinics and community centres without proper skills. To be successful in providing community- based drug-resistant TB treatment care, provinces must inject money to build infrastructure and capacitate local people. The national department cannot fund everything," he says.
Nyoni is concerned about the social and economic wellbeing of those patients who have to leave their jobs and stay in hospital, or dig deep in their pockets to get to TB hospitals, like those in Mpumalanga.
"It would be nice to walk to the local clinic for treatment and save money instead of being hospitalised or wait for unreliable transport," he says.
"Or maybe I am asking too much from a department that is already giving us free treatment."
Home care can be successful
Philanjalo Care Centre, a non-profit home-based care organisation in Tugela Ferry, a small rural town in KwaZulu-Natal, has demonstrated that decentralising multidrug-resistant tuberculosis (MDR-TB) treatment can be successful.
The decentralisation of care involves moving TB treatment from hospitals to the community – making it available at local clinics or patients' homes.
In 2008, Philanjalo joined forces with Tugela Ferry Care and Research and the KwaZulu-Natal health department to pilot decentralised MDR-TB treatment programmes within the communities of Msinga, Endumbeni, Umvoti and Nqutu.
Their community caregivers worked with community members, nurses and social workers to treat patients at their homes or from Philanjalo's 32-bed health facility in Tugela Ferry.
In 2008, 18 MDR-TB patients were enrolled in their community care programme.
Two years later, all the patients were cured.
In the past two years, 218 patients were treated – 176 of them were discharged and eight died. The remaining 34 were transferred to the government's Greytown hospital for admission.
"There is no doubt in our minds that decentralisation is necessary," says Derek Turner, data manager at Philanjalo.
"Many patients are breadwinners or guardians of children. Moving them from their homes and hospitalising them for long periods can have a devastating impact on patient and family.
"This leads to patients trying to avoid treatment, or defaulting, which increases the risk of infecting others and developing further drug resistance."
Between July 2008 and November 2009, the medical research council and the provincial health department conducted a study in the Tugela Ferry area involving 860 patients with MDR-TB.
Of the 419 patients treated in the community, 52% converted to TB-negative cultures (which indicate that treatment is effective and a patient is no longer infectious).
By contrast, the study showed that only 24% of the 441 patients who were treated at King George V hospital in Durban converted to TB-negative cultures.
In August 2011, the national department of health approved a policy on decentralisation of MDR-TB treatment.
The department's national TB director, Norbert Ndjeka, admitted that implementation has been slow, with several of the country's rural provinces, such as Limpopo, Mpumalanga and North West, having very few decentralised sites.
For more information visit philanjalo.org.za
Sydney Masinga is a Bhekisisa health journalism fellow