“It felt like my entire family just dumped me in the hospital to die,” remembered mother-of-two, Nomasonto Lubisi from eMalahleni in Mpumalanga after being diagnosed with multi-drug resistant TB (MDR-TB).
Shortly after her diagnosis in December 2017, Lubisi was admitted to a provincial hospital and placed on a treatment regimen consisting of a cocktail of potent drugs.
One of these medicines was the first anti-TB drug developed in almost half a century called bedaquiline. This makes Lubisi one of just 28 700 people on the planet with access to the life-saving drug. More than two-thirds of these patients are in South Africa, which is one of the number of reasons the country has received widespread praise for its anti-TB policies.
But Lubisi didn’t feel that fortunate: “My family were scared of getting TB from me and made me live in isolation before I went into hospital. I was in there a year and they didn’t visit me, not even once.”
In light of her experience, the words uttered by Deputy President David Mabuza barely a week ago ring hollowly. “Our people need not feel bad about getting TB,” he said, speaking at the launch of a TB prevention initiative in Durban.
“For as long we breathe, we can contract TB because this disease is an airborne disease! There is also no need to ill treat people with TB. As we said, anyone can get it. Let us not stigmatise people with TB, instead let us help them get the treatment and get cured!”
TB drug bedaquiline
Last year, government decided to introduce bedaquiline as the first-line option for treatment of patients with resistant forms of TB, which, up until that point, had entailed two years of toxic treatment that causes permanent hearing loss in up to a third of patients. To make matters worse, only about half of patients who managed to finish this gruelling prescription were cured.
In contrast, a bedaquiline-based regimen cures up to 80 percent of patients, according to new evidence published this month in New England Journal of Medicine.
However, South Africa remains the first and only nation to have implemented the superior and more tolerable regimen.
“South Africa’s leadership in rolling out novel tuberculosis therapeutics should stand as an inspiration for all of us who aim to end tuberculosis, which will only be possible if innovation is embraced,” Doctor’s Without Borders’ (MSF) Anja Reuter noted last year in The Lancet Respiratory Medicine journal.
Earlier this year Health Minister Aaron Motsoaledi reiterated that an estimated 160 000 people are ill with TB in South Africa but are not on treatment, and termed the “missing patients”.
Ingrid Schoeman, a TB survivor and dietitian with the local organisation, TB Proof, said that this is precisely why it is not enough to introduce new drugs, as the stigma surrounding the disease prevents many of these patients from going to health facilities and testing for TB.
“Imagine how lonely it must be to be sick and fear losing your friends, your job or relationships because you got sick with TB. TB stigma causes people to avoid seeking healthcare and, without treatment, you cannot be cured,” she said.
And the source of discrimination experienced by those with TB isn’t just from families, friends or even strangers. Many South Africans complain that some health workers are an added hurdle to accessing TB care.
Stigma in the system
Twenty-four-year-old Siphiwe Buthelezi, also from Mpumalanga is currently being treated for MDR-TB but his treatment has been threatened on more than one occasion due to fear.
“At times if I couldn’t get my treatment when I was supposed to, I wouldn’t get it because I was afraid that the nurses will shout at me because that’s what happened before,” he said.
Buthelezi has “struggled a lot to take my treatment because I do not have a strong support system on my side and then the problem caused by the poor attitudes from nurses to me as a patient”.
South Africa is also dropping the ball on other seemingly-simple anti-TB tools, particularly when it comes to preventing the spread of the illness.
According to Dr Neil Schluger, a TB expert from international organisation Vital Strategies, “the scope of South Africa’s TB problem is just enormous”.
“To its credit, the country has been enthusiastic and a world-leader in adopting new TB technologies and tools … but infection control programmes (not everywhere but in most facilities) are lacking,” he said.
These include the availability of protective masks for health workers, proper ventilation systems and handling of TB specimens.
But for patients like 51-year-old Andries Maille from Barberton in Mpumalanga, while it is “good” that politicians are talking about TB stigma he wondered if anything will change for ordinary South Africans like himself.
Currently undergoing MDR-TB treatment, the miner told Health-e News he has witnessed “people not seeking professional help for TB because of the stigma and discrimination they experience in society”.
He said: “If I didn’t get the support I have from my family I wouldn’t have been able to accept that I have MDR-TB. I probably would have died before I even got diagnosed.”
An edited version of this story was published in the Daily Maverick