The ‘hell’ of fighting drug-resistant TB
Never-ending side effects cause some patients to abandon treatment
ESHOWE, SOUTH AFRICA— This is the fifth story of a six-part series exploring how the unfettered use of antibiotics pushes humanity closer to a post-antibiotic 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 health-care 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 firstline of defence 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 (WHO) 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 laboratory-confirmed 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 win- dows 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 pins-and-needles sensations, and their skin can change colour.
“It was hell,” Nombulelo Msimango says 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 XDR-TB 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, such as 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,” te Riele says.
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.” Diagnosis, stigma, poverty Despite such difficulties, it’s crucial patients start and stay on the right medication to save their lives and prevent them from infecting others. Yet, until recently, doctors needed weeks to diagnose resistance, sometimes starting patients on possibly ineffective medication that could further fuel the problem.
Health-care workers detect only one in four MDR-TB cases, the WHO estimated in a 2015 report, and cure only half.
In recent years, a new test for a platform called GeneXpert emerged to address that problem. It allows doctors to diagnose TB and check for resis- tance to one of the four frontline TB drugs in a matter of hours, providing a good indicator for an MDR-TB diagnosis. “That was really a game changer,” says Heidi Albert, head of the Foundation for Innovative New Diagnostics in South Africa.
But the platform requires infrastructure that may not be present in rural communities and cannot test for resistance to a wider range of medicine.
TB patients also face stigma and many showing symptoms may avoid seeking help.
People still tend to believe patients with drug-resistant TB can’t be cured and remain incredibly contagious, even after treatment begins. Stories abound of young women unable to marry after a TB diagnosis, communities forcibly expelling infected individuals, and friends and family alienating patients. Even health-care workers may shun their charges with drug-resistant TB, fearing they’ll catch the disease.
Poverty also plays a role in the spread of TB, especially in informal settlements known as townships and remote areas. Multiple generations typically share one or two rooms in cramped, makeshift houses in the townships. They are relics of the country’s apartheid history, a visual reminder that segregation persists.
Patients from such communities may not be able to afford the couple of Canadian dollars it would cost to travel to a clinic to pick up medicine or undergo testing, or to stay in a hospital and forego work.
They may share a windowless bedroom with multiple family members, putting their family at higher risk of infection. They may struggle with drug or alcohol addiction, making them less likely to stick to a treatment plan, or lack education and believe that traditional healers, who provide herbs and other remedies, will cure them. Canada is ‘lucky’ to avoid outbreak so far While eastern Europe, Asia and Africa bear the brunt of the disease’s burden, living in Canada doesn’t provide immunity because bacteria do not respect borders.
In 2017, more than 1.2 million people from the 20 countries the WHO identifies as having the highest MDR-TB burden in the world, including South Africa, visited Canada, according to Statistics Canada.
In 2016, Canadians travelled to those19 of those 20 countries more than 1.6 million times. The agency did not provide data for North Korea.
Up until the end of April 2018, Canada admitted nearly 63,000 permanent residents from these countries, according to data compiled by Immigration, Refugees and Citizenship Canada.
Between 2006 and 2016, 173 samples tested in Canada were classified as MDR-TB and seven as XDR-TB, according to a government report on drug resistance. A majority of tuberculosis cases occur among people born outside of Canada, such as Doonan, according to government data.
The federal government is in discussions with the provinces and territories to expand testing for new arrivals to include scans for latent TB, in which people infected with TB bacteria do not show signs of active TB and are not contagious, but can develop it later. It did not provide a timeline for implementation.
While both travellers returning to Canada and newcomers may bring a drug-resistant strain into the country and infect others, there is one Canadian community of particular concern to experts: the Inuit.
In 2016, Inuit people experienced TB at a rate of 170.1 per 100,000, according to government data, nearly 300 times higher than the rate for people born in Canada who are not Indigenous.
On this year’s world TB day in March, Indigenous and Northern Affairs Canada called the high TB rates among the Inuit a “staggering and unacceptable reality.” It promised to eliminate TB cases in Inuit Nunangat by 2030.
The milestone, if reached, would land several years ahead of the WHO’s global plan to reduce TB cases by 90 per cent globally by 2035, including drug-resistant TB. Some progress has been made. GeneXpert helped better diagnostic capabilities and successful drug trials allowed doctors to shave a few months and pills from standard treatment regimens.
But all that’s been done is still a far cry from the investment into research and resources that experts say is needed to combat the growing epidemic.
Health-care workers need better diagnostic tools to identify resistance quickly and accurately. Patients need shorter, less harmful drug regimens so they finish treatment.
Those changes are necessary, experts say, to tackle not only drug-resistant TB, but all superbugs.