Dr Arlette Bekker has always led a healthy and active lifestyle as she believed that as a medical professional leading by example is key.
Even after she developed a persistent chest pain about two years ago at the age of 29, the young surgeon and avid runner did not think much of it, dismissing it as a symptom of fatigue from working very hard in one of the overburdened hospitals in the Western Cape, Worcester Hospital.
After three months of pain and episodes of breathlessness, she started suspecting she had a health problem. When a radiologist colleague and friend advised her to have chest X-rays, Bekker received the most shattering news.
Her lungs were surrounded by fluid, and on further investigation, laboratory tests showed she had multi-drug resistant tuberculosis (MDR-TB). This form of TB is resistant to standard TB treatment, particularly to two of the most powerful first line TB drugs, isoniazid (INH) and rifampicin (RMP). You can get MDR-TB in two ways: by taking TB medication incorrectly or through an infection from another person who already has it.
“It was the most shocking news. I was young, healthy, fit and highly functional. Even though TB was was prevalent in the community (Worcester) that I worked in, I didn’t think of it as a possibility. I only worked with surgical patients, so I never saw myself as a high risk.
“Even with the training we had concerning TB, I didn’t expect to contract it given that I had no risk factors. So I was very much taken aback,” she said.
TB is in the spotlight this month as March is TB Awareness Month. Each year, the world marks World TB Day on March 24 to raise awareness of this infectious disease, which is the leading cause of death in South Africa.
Bekker is one of many health workers who have contracted TB at work in recent years. Another is Dr Edward Evans, a GP from Plumstead, who has contracted TB twice. He first got it in 1980 after working in public sector hospitals in the Western Cape and KwaZulu-Natal for four years.
Evans, 70, who had no TB immunity at the time as he had emigrated from the UK where TB was almost non-existent, said he has since become very cautious about the disease after he was re-infected seven years ago.
“Even though I work in the private sector where the risk of TB infection is low, after my experiences with TB twice I’ve become very careful. I go for chest X-rays every year just to check,” he said.
It was easy to diagnose the TB infection the second time, the first time it took much longer. He believed that his position of "privilege actually disadvantaged me as no one suspected that I could have TB".
He was only diagnosed after a year of falling ill with TB symptoms. Even though the initial X-rays showed abnormality in his lungs, doctors suspected it was a tumour, but it was a TB cavity. It was only after doctors performed a thoracotomy (an incision into the chest wall) to conduct a biopsy on his lungs that he was diagnosed correctly.
“I am white and middle-class and, unfortunately, in those days TB was never associated with the privileged communities. In fact, even today, TB is still associated with poverty an attitude I think is problematic as TB knows no class or race.
“If I was black I probably would have been initiated on TB treatment immediately, even before all the investigations, because I had some of the classic TB symptoms. I was losing weight, had night sweats and my asthma was playing up,” he recalled.
About 1.7 million people around the globe die due to TB each year, while in South Africa more than 33 000 die from TB every year.
South Africa is one of the countries worst affected countries by the killer disease with the World Health Organisation (WHO) estimating TB incidence here to be at 454 000 in 2015.
That means 0.8% of the population develops active TB every year. Almost 60% of those infected with TB are also HIV-positive, which is believed to add stigma to this disease. The WHO estimated 19000 cases of drug-resistant TB in South Africa, up from 7350 in 2007.
But even more disturbing is that health workers, who are meant to save lives, seem to be at greatest risk. Experts suggest that South African health workers are three times more at risk of contracting TB than the general population. Up to 30% of health workers who get drug-resistant TB die. Those who survive are left with debilitating side effects such as hearing loss, nerve damage, blindness and mental health problems like depression.
According to the 2016 Global TB Report, about 10000 healthcare workers were reported to have TB around the world. South Africa accounted for the second-highest proportion at 21%, after China at 30%. Those likely to contract TB are doctors and nurses between the ages of 25 to 44.
Bekker, who is set to complete the 18-month treatment period for MDR-TB in May, said that while being diagnosed with this TB strain was a shock for her, the “worst part of my life was to experience the gruelling side-effects of the toxic MDR drugs”.
Bekker, who had since lost 30% of her hearing due to the injectable drugs, said her cognition, speech and balance had been negatively affected as well. She also had heart problems, post-traumatic stress disorder and severe depression, which she is still having therapy for. Bekker, who is a specialist surgeon at Tygerberg Hospital, has also temporarily stopped working in a hospital environment to avoid opportunistic infections as she is immune-compromised.
Undergoing treatment has given her better insight into why so many TB patients default on treatment. “The side-effects don’t clear up with duration, and require a multi-disciplinary approach, which was hard to come by. But mainly this experience has taught me that anyone and everyone can get MDR-TB. We are all exposed to the main risk factor. I am now also fully aware of the incredible need that exists worldwide to allocate more funds to develop new TB drugs, particularly MDR-TB drugs,” she said.
Dr Dalene von Delft, an MDR-TB survivor who started TB advocacy NGO TB Proof, which backs evidence-based TB control measures, said that in memory of nurse Jolene Samuels, who was an MDR champion, the organisation has drawn up a pledge to empower people to choose between a novel drug, bedaquiline or delamanid, and the toxic injectable aminoglycoside.
She said while there are current data limitations on the new drug, “there is enough information to reasonably assume that for MDR-TB the new regimens are equally effective as the old regimen containing an injectable”.
Currently, the new drug bedaquiline is offered on a limited scale and only those who develop adverse side-effects from conventional drugs are prescribed it.
Jaco Combrinck, a divisional manager of 3M, a science company that launched a fit-testing programme at Groote Schuur Hospital at the weekend, called for mandatory fit-testing or respirators. He said health workers sometimes wore surgical masks to protect against TB, but this didn’t work well.
Some health workers have previously said they did not wear “TB masks” as they were uncomfortable and impractical.
But Combrinck said testing would ensure that TB respirators conformed to international safety standards and reduce wearers' exposure to the disease. He added that properly fitted respirators change negative attitudes. “Protective equipment is a necessity. A properly fitted respirator should be comfortable and provide the intended level of protection.”