Why do so many South Africans die of TB?

Part one of a three part series on a neglected disease which kills over 100,000 South Africans every year

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Photo of TB march
Activists from the Treatment Action Campaign marched to Parliament on 24 March 2015, World TB Day, to demand more investment in TB research. Photo: Daneel Knoetze

Listeriosis has killed about 200 people since January last year. In the past six months, the outbreak has generated many headlines. There was a huge investigation to identify its source. Once identified, large amounts of meat and other produce were destroyed as a precaution against new infections.

In the last 14 hours about the same number of people died of another bacterium –Tuberculosis. The World Health Organisation estimates that 124,000 people died of TB in South Africa in 2016 (about 330 daily). It is the country’s leading cause of death, and has been made much worse by the HIV epidemic: over 80% of people who died of TB in 2016 were also infected with HIV. People with damaged immune systems are at much greater risk of becoming ill with TB.

Most TB deaths are preventable. It is usually quite an easy disease to cure – if you are given the right drugs and complete the standard six-month course. Less than 4% of TB deaths in South Africa are caused by drug resistant forms of the bacteria that are much harder to treat.

Worldwide, TB caused 1.7 million deaths in 2016, with 10.4 million people becoming infected.

(All these statistics need to be treated with a bit of caution. Estimating TB deaths is complicated, and beyond the scope of this article.)

In this series of three articles, published over three days, we try to answer three questions: (1) Why do so many South Africans die of TB (today’s question)? (2) What research is being done on new medicines and diagnostics? (3) Why do so many South Africans get sick with TB?

So why are so many people still dying from a disease that is easily treated?

Minister of Health Aaron Motsoaledi said in March that despite TB being the country’s biggest killer, “people don’t take TB seriously, they are not scared of it, they don’t talk much about it, even at leadership level”.

About 5% of people with active TB haven’t been tested. Another 13% have had a TB test but never received their diagnosis. And many patients aren’t even started on treatment, despite testing positive for TB. Estimates show that about 14% of patients who receive a positive TB diagnosis don’t begin treatment. Finding these missing patients is vital in the battle to end TB, said a recent article in the Journal of Infectious Diseases.

Then there are the patients who begin treatment. Over 75% of them are treated successfully. But that still means one in four patients who begin treatment are not being cured.

Dr Helen Cox, an epidemiologist at the University of Cape Town Institute of Infectious Disease and Molecular Medicine, said that patients stop treatment for many reasons.

“I think we don’t do treatment literacy and counselling as well as we do for HIV. We know lots of people stay on antiretrovirals for life. But for TB I don’t think we ever really do that. We say to people, ‘You’ve got TB, here are your drugs and you need to take them for six months’.”

She said people’s lives are complex and once patients start to feel better it often isn’t a “high priority” for them to continue taking their drugs. The problem is that if patients don’t finish their treatment course there is a high chance of them getting sick again.

“We need to focus on the patient much more,” said Cox. “It’s what we call patient-centred care, which we haven’t done at all in TB. There is a lot of blaming of patients and stigma and discrimination.”

The South African stigma index survey conducted by the Human Sciences Research Council in 2014 found that over a third of people with TB said that they had been teased, insulted or sworn at because of their TB status.

Drug that causes deafness

Keeping patients on treatment is much harder with drug resistant TB. “The drugs we are using now are horrible and they have enormous side effects that are very debilitating. I would struggle to stay on them,” said Cox.

The current drug regimen for drug resistant TB also includes an antibiotic called kanamycin which is injected. Not only is it painful but it can cause deafness.

And while the evidence that the standard TB regimen, for patients who are not resistant, is very good, the evidence for most of the drugs used to treat drug-resistant TB work is quite poor.

Of the all the patients with drug-resistant TB who begin treatment, about half have treatment success.

It need not be like this. In the past decade a number of new drugs have emerged for treating TB. Some of them are promising and are better tolerated by patients than kanamycin, such as bedaquiline. There are clinical trials running at the moment which will tell us by the early 2020s whether we have a whole new treatment regimen for TB that includes bedaquiline.

But the evidence for bedaquiline is already better than for kanamycin and many activists and doctors believe it should replace kanamycin. In fact, that is de facto already happening in the Western Cape, where all patients with drug-resistant TB who are unable to tolerate kanamycin injections are offered bedaquiline.

Another promising development is that the time it takes to treat many patients with drug-resistant TB has been shortened from the two years it used to take. A study, called STREAM-1, of a nine to twelve month treatment regimen found an 80% success rate. Known as the Bangladesh regimen — because that is where it was first studied — it has been rolled out across South Africa.

When the system fails patients

Sometimes, despite a patient’s best intentions, accessing their TB drugs is impossible. StopStockout’s 2015 survey found that about one in four health care facilities were affected by stock outs of antiretroviral (for treating HIV) or TB medicines. “When stock outs occur, patients may lose their trust in the health system, or be unable to afford to return to a clinic on multiple occasions to collect medication,” said the report.

A patient from Mpumalanga said in the report, “I’ve been diagnosed with MDR-TB in September 2015. The facility where I get my medicine is always out of stock and I’m concerned that I will default on my treatment. I try to go to the clinic seven to ten days before my medicine is finished to inform the clinic, but this has not helped and I’ve been told to go somewhere else to get my medication. I’m unemployed and cannot afford to go there.”

Many patients with drug-resistant TB are only able to access their treatment at central hospitals, rather than their local clinic.

“Unlike HIV patients who have many options to collect their treatment close to home, TB patients lack choices. Long and costly journeys to overcrowded central hospitals, sometimes daily, cause many to simply give up on TB treatment,” the Nobel Peace Prize-winning organisation Médecins Sans Frontières has said.

Exceptionally long waits to access healthcare facilities are also common, as GroundUp has previously reported. Patients reported arriving at 4am in the hope that they would be seen four hours later.

According to data from one clinic which is part of the health department’s initiative to implement “ideal clinics” across the country, nearly 70% of patients waited two to five hours to be seen, sometimes as long as seven hours.

An “ideal clinic” is one that has good infrastructure, enough staff and medical supplies, including medicines, and good administration processes.

The South African Health Review reported that 322 clinics were given “ideal clinic” status in 2015/16. But this is less than 10% of the country’s 3,477 primary health care facilities. “This leaves much to be desired,” said the review.

“National and provincial health departments, with the assistance of national and provincial treasuries, must speed up infrastructure and staffing improvements and correct the procurement processes that see many clinics functioning without the required medication, consumables, equipment and furniture,” said the review.

For this series we emailed questions to Popo Maja, spokesperson for the Department of Health. We also sent him an SMS and tried to call him. We received no response.

CORRECTION: The article originally incorrectly said 14% of patients diagnosed begin treatment. It has been corrected to say 14% don’t begin treatment.

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