South Africa: Tuberculosis

"It's a wonderful present to be getting treatment," says Sindiswei Xhamori, giving us a serious look from sad eyes. The twenty-seven-year-old tuberculosis patient's words are muffled by a surgical mask – to protect not her, but everyone who comes into contact with her. Sindiswei is a carrier of an extremely dangerous, multi-drug-resistant (MDR) tuberculosis pathogen. It is resistant to two of the four most important antibiotics that are used in combination to fight the disease. Depending on what treatment is available, up to 80 percent of its victims die.
"When I was diagnosed with tuberculosis, I thought I was cursed," Sindiswei recalls despondently. "I had no idea you can pass on the disease by talking, sneezing or coughing. I've felt guilty ever since I found that out. I sit here and I think about how many people I might have infected." Sindiswei is in quarantine to reduce the threat she poses to others – behind locked doors, bars and barbed wire at the Brooklyn Chest Hospital, Cape Town, where she is cared for around the clock by specially trained medical personnel. You can see the fear in her face; she looks lonely and lost. Again and again, her body doubles over in painful fits of coughing. "Still," she says, brightening up cautiously, "At least I'm no longer spitting blood."
Absurd as it sounds, Sindiswei has been lucky. Some of her fellow patients suffer not from MDR but XDR tuberculosis. The pathogens of this extensively drug-resistant tuberculosis are also resistant to some of the other tried-and-tested drugs. XDR tuberculosis is even harder to combat, and the chances of survival are even lower.

Sindiswei Xhamori, 27 unemployed, MDR tuberculosis patient

"Actually, since the nineteen-seventies we had thought tuberculosis had been defeated," says Professor Andreas Diacon of the University of Stellenbosch in Cape Town, explaining one of the great misunderstandings in the history of medicine. "After the first drugs had been developed in the fifties and a standard treatment in the sixties, it seemed to be just a matter of time before the last tuberculosis patient would be cured and the disease consigned to the history books."
This assumption was wrong. In fact, a third of the world's population are latently infected with tuberculosis today. One person is infected every second. And if the bacteria are resistant, the chances of recovery fall dramatically. "Interrupted or incorrect use of the drugs, their lack of availability in developing countries, different degrees of effectiveness in different organisms – all this has meant that the disease never completely disappeared and drug-resistant bacteria kept on emerging," Diacon explains. "According to studies conducted by the WHO, in 2011 more money was spent on treating resistant strains than normal patients for the first time. "We urgently need new drugs."
So the agile Swiss pulmonologist took the logically consistent step of founding "Task Applied Science" in 2005. The company conducts research studies on new therapies for tuberculosis. South Africa is a perfect location. The country has one of the highest tuberculosis infection rates – and the highest AIDS rate – in the world. This simultaneity is no coincidence. In 2009 a quarter of all HIV-positive patients worldwide died of tuberculosis. That same year, nearly one in five adults in South Africa were living with HIV and AIDS. In conjunction with the classic risk factors of poverty, malnutrition and extremely cramped living conditions, this created the perfect basis for the comeback of a disease everyone believed had been defeated. Recent surveys by Statistics South Africa show that tuberculosis is the main cause of death in the country.

Prof. Andreas Diacon, University of Stellenbosch and head of "Task Applied Science"

"When I found out that I had tuberculosis, I immediately had to think of my children," Alando Adams recalls, despondently. The man in his mid-twenties has a two-year-old son, and his wife is pregnant again. "It's terrible that I might die and leave her behind." He shudders at the thought, making his Rastafarian hair fall into his face. "I knew I had to get tested and treated, no matter what people say."
And most people don't say anything good. The link between HIV and tuberculosis is no longer a secret. Anyone who is seen going for a TB test is soon regarded as having AIDS and immediately stigmatized, as often happens in South Africa. Neighbors, friends, often even their own families mercilessly turn their backs on them. As a result, many patients suffer a social death before their physical death. A prospect that prevents them from going to see a doctor.

Alando Adams, 25, unemployed, TB patient

"I was ashamed when I heard that I had TB," Gabiba Daniels admits. "And I had to cry because I was afraid of dying. I would like to see my grandchildren grow up." The forty-year-old is one of South Africa's 25 percent unemployed, like Alando. For years she has been hoping to get a job ironing clothes: she loves the smell of freshly washed laundry, the reassuring order of freshly folded clothes.
Her reality is different: Gabiba lives in Blikkiesdorp, which is Afrikaans for 'tin can village'. The slum is an urban resettlement camp for the poorest of the poor. It is located in Delft, the only township in Cape Town where blacks and coloreds live together. The latter are descendants of indigenous black, colored immigrants and white Boers. They are on the lowest rung of the social ladder. The misery, tensions and crime are correspondingly great in Delft.
Yet Blikkiesdorp is proof that even catastrophic conditions can be aggravated further: 1,700 tin shacks in a very confined space, arranged in rows with absurd neatness. Four walls, a roof, no windows. 18 square meters, sweltering in the summer, bitterly cold in the winter. Up to ten people, often from different families, share one of the tin cans, separated only by a curtain. 14,000 people – blacks, coloreds, refugees from neighboring countries – some of them have been on the list for a government-subsidized house for 30 years.

Gabiba Daniels, 40, unemployed, TB patient

Taharqa Elnour sums up the misery like this: "Blikkiesdorp is the waiting room for a better life." Then, embarrassed by his own cynicism, he admits: "We call it the 'TB farm'. There's no other place in Cape Town where tuberculosis is spreading as quickly as here."
Elnour, in his late twenties, is a community engagement coordinator at Professor Diacon's Task Applied Science organization. Together with community helpers he recruits study participants, makes sure they are properly informed and taken care of. He commutes every day in just 15 minutes from the rich, white Cape Town to the poor black Cape Town – from the "first to the third world," he says – and some of his experiences get him down.
"Because the huts in Blikkiesdorp have no windows, they are never ventilated," Taharqa reports. "And because the people have no electricity, they heat by boiling water. This greatly increases the humidity, also in winter. Taken together, both aspects create ideal conditions for bacteria to spread. The high population density combined with the people's poor physical condition maximizes the infection rates," he says angrily, piecing together the fatal chain of circumstances that ensures most of his recruits come from Blikkiesdorp.
They are usually given their initial diagnosis at the Delft state day clinic, where three nondescript steel containers stand. This is where a team of physicians and nurses from Task Applied Science work. Anyone who is tested for tuberculosis in the clinic is immediately recommended to go to the containers. The "Task" staff find their potential study participants in collaboration with the National Health Laboratory Service, which records all new cases of TB in Cape Town.
"We visit the patients, explain what happens during the trials, inform them about the risks, but also about the opportunity of contributing toward the development of a new TB drug one day. We interview them to find out their age, state of health, any illicit drug use or pregnancy, and also check their blood count," says Taharqa, describing the team's other activities. "If they meet all the conditions, we ask them to sign a declaration of consent and include them in our program."

Taharqa Elnour, 27, community engagement coordinator

Professor Diacon is aware of the fear that global pharmaceutical companies might use underprivileged minorities from developing countries as guinea pigs. So, without being asked, he adds: "All the studies are subject to extremely strict safeguards. Our experiments have to be approved by several government regulatory bodies and ethics committees. The safety of the patients always takes top priority."
However, they are largely uneducated. Not all give the impression that they understand the risks associated with a trial. Basically, however, the Task CEO believes "the participating patients are happy to have much better access to drugs, nursing staff and other medical services than the public system can provide."

Prof. Andreas Diacon, University of Stellenbosch and head of "Task Applied Science"

Although she has been informed about the risks of contagion, she sits without a mask among her also unprotected children and grandchildren. She backs up what Diacon says: "The people in the container are wonderful. They treat me with kindness and respect as if we were a family. And unlike the hospital, I don't have to sit around waiting for hours."
Like all the participants from Delft and Blikkiesdorp, she comes to the container every day to take her medication. She is also given a specially prepared meal to improve her overall physical condition. In both cases this is supervised and confirmed in writing by the nursing staff. If she can't come, she receives a visit from a community helper who ensures – and also confirms in writing – that she really is complying with all the prescribed measures. This is the only way the efficacy of a drug can be examined within the framework of a study.

Gabiba Daniels, 40, unemployed, TB patient

Because this control is lacking under normal conditions, many therapies fail and even promote resistance. In Brooklyn Chest Hospital, however, Sindiswei vows to do her best to avoid precisely that: "I will take my tablets every day over the next two years because I can feel their effect on my body." Then she places all her hopes into one big sigh: "And if I persevere, I will get well again!"

Sindiswei Xhamori, 27 unemployed, MDR tuberculosis patient

(Report, Photos and Podcast by matias boem, 2012)