SOME BELIEVE THE CURE IS WORSE THAN THE AILMENT.
The ‘hell’ of fighting drug-resistant TB causes some to abandon treatment
ESHOWE, South Africa - Canadian Press reporters travelled to South Africa and India to investigate the growing epidemic of drug resistance, which experts describe as the single greatest threat to human health on the planet. This is the fifth story of a six-part series exploring how the unfettered use of antibiotics pushes humanity closer to a postantibiotic era in which common infections may be impossible to treat. The R. James Travers Foreign Corresponding Fellowship helped fund the project. Catherine Booth Hospital in rural South Africa perches atop a long, winding road, overlooking lush, green fields. Ambulances drive along the bumpy path carrying emaciated people from the cities and villages scattered nearby to spend months - if not years - enduring toxic treatment for an infectious, airborne superbug. Drug-resistant TB wreaks havoc on the body. Infected people cough so violently they spit up blood and pieces of their lung lining. Their chest aches and fever spikes. Their body weight plummets and they transform into a skeletal frame. On a blistering hot day, one man slowly shuffles his body toward a wheelchair. He wears only a diaper beneath an open robe, and his skin stretches taut over his bones. His knees are easily the widest part of his legs. Drug-resistant tuberculosis is the world’s deadliest superbug. It develops when bacteria that causes tuberculosis, a disease believed to be as old as mankind, stops responding to drugs used to treat it, largely because healthcare workers improperly prescribe medicine or patients stop treatment early. Infected people can spread it through the air when they cough. Often, a victim’s only fault is breathing. It took Tsholofelo Nombulelo Msimango a long time to realize she wasn’t to blame when she caught the infectious disease at 19 years old. When it came, it stopped her entire life. Doctors told her she must stay in hospital, swallow more than a dozen pills daily and receive painful injections five days a week for six months if she wanted to live. “My first thought was that I’m going to die ... I’m really going to die,” the now 24-year-old recalls from her home in a township near Johannesburg.
South Africa’s Burden
Health-care workers diagnose hundreds of thousands of people with drug-resistant TB each year. By 2050, the disease is expected to account for about one-quarter of a projected 10 million annual deaths from all drug-resistant infections around the world. Four drugs make up the first-line of defense against tuberculosis. If a patient’s strain is immune to at least two of these, it is considered multi-drug resistant (MDR-TB). If it’s unresponsive to most of the drugs doctors turn to next, the diagnosis escalates to extensivelydrug-resistant TB (XDR-TB). An estimated 600,000 people developed or required treatment for multi-drug-resistant TB in 2016, according to the World Health Organization’s most recent annual report on the disease. South Africa is burdened with some of the highest numbers of tuberculosis and drug-resistant TB cases in the world, the WHO says. More than 20,000 laboratoryconfirmed cases required MDR- or XDR-TB treatment in 2016. While the infectious disease remains rare in Canada, travellers to and from the country give bacteria ample opportunity to hitch a ride and spark an outbreak. People carrying multi- or extensively-drug resistant TB can spread it to others by coughing. Sharing a bedroom, bus or break room with closed windows can result in transmission. In countries with elevated levels of infection, health-care providers struggle to contain the disease that slowly ravages the body. They work against poverty and stigma, with inadequate diagnostic tools and long, toxic treatment regimens that prompt many patients to stop before they’re cured, while remaining infectious to others. Patients put their lives on pause for months, sometimes years, for treatment. Depending on severity, the odyssey can include a hospital stay of more than a year, dozens of pills daily and a painful injection into the buttocks each day for six months.
The ‘Hell’ of Treatment
Workers at Cape Town’s Brooklyn Chest Hospital recall knowing exactly when nurses inject patients with medicine because the screams emanating from another building interrupt their staff meetings. Some patients describe it as lava - a fire-like sensation washing over their body from where the needle enters. The list of side effects seems never ending. Some patients permanently lose their hearing, experience psychosis or feel constant nausea. Their kidneys can fail, their hands and feet can sting with pinsand-needles sensations, and their skin can change colour. “It was hell,” says Nombulelo Msimango of her two-year treatment plan. “I felt like my life was over.” After seven months, Nombulelo Msimango secretly decided to stop treatment. She hid the pills from her family. It’s a common reaction, say health-care workers, some of whom recount regularly finding medicine tossed over hospital walls or empty beds after patients escaped overnight. “It used to happen all the time,” says Julian te Riele, a family physician at Brooklyn Chest Hospital who oversees the adult male XDRTB ward. “There were pills in the dustbins, pills outside the windows, pills everywhere,” he says, adding that’s become less of a problem as doctors gained access to some newer drugs, like bedaquiline, to replace those that give patients unbearable side effects. Disrupted treatment feeds into the vicious cycle of drug resistance. The bacteria grow stronger and medicines that previously worked no longer do, leaving doctors with fewer - if any - treatment options. “It takes a lot longer to kill those sleeping bugs. And, if you don’t take your pills, they wake up later and they wake up stronger,” says te Riele. About a month after Nombulelo Msimango stopped treatment, her health deteriorated. She coughed up blood and saw an emaciated face in her mirror. She landed in a hospital and stayed for a year. Her TB upgraded to XDR, possibly because she interrupted treatment, or possibly because of an initial misdiagnosis. Either way, she cried for most of that day. Until recently, patients faced a harsh choice: cure TB, but lose their hearing, or stop treatment and let the TB kill them. Now, with the arrival of some new drugs, doctors perform tests on patients and try to switch them to a different medicine as soon as they show any signs of hearing loss. The prospect of life in silence terrified musician Lizahn Kemp, who at 25 years old was shocked to learn the lymph nodes swelling on her neck stemmed from MDR-TB. “Music is my life,” she says. “I can deal with other stuff, but I can’t deal with not hearing.” So much so, she attended a music festival for several days rather than admit herself to hospital immediately, as her doctor ordered in April 2016. It was only when she woke up at the festival with one of her lymph nodes oozing that she realized the seriousness of her illness. Several months into receiving the injectable she noticed trouble with her hearing - a fear a medical test quickly confirmed. She immediately swapped the medicine out of her daily regimen, but she says she’ll never regain the small percentage of hearing she lost in one ear. “The ringing, I can always hear.” Physical side effects, as Kemp knows, are only half the story. The medication made the artist feel emotionless and half-dead inside. She no longer wrote short stories or music lyrics. “It’s literally feeling like you’re in a prison,” she says. Sometimes in those dark moments, patients’ thoughts can turn to suicide. After Sipho Luthuli learned he had MDR-TB, the 20-year-old sometimes contemplated killing himself. He spent a lonely month at Catherine Booth Hospital, far from the compound where he lives with his extended family in rural Eshowe. They only visited him once in 28 days because of financial constraints, he says in isiZulu through a translator. Luthuli left school halfway through grade 11 to fight the disease. Instead of working towards graduation, the teenager, who believed a diploma would be the ticket to better his family’s circumstances, felt isolated from his former schoolmates and spent his days taking medicine. Its smell alone made him nauseous. He feared the daily injections, intermittently lost his hearing and developed a rash. When the side effects, treatment and alienation became too much, Luthuli wondered if he’d rather just die.