There are over three million people alive in South Africa who have been cured of TB. But even after being cured, many continue to suffer the long-term after-effects of the disease. To find out more about this under-recognised problem, Spotlight recently attended a global gathering of experts focused on life after TB.
Post-TB lung disease affects an estimated 60% of everyone who has been cured of TB. That is according to Dr Brian Allwood, a consultant pulmonologist at Stellenbosch University and Tygerberg Hospital. He is also the co-convenor of the third International Post TB Symposium that was held in Stellenbosch in April.
TB is typically cured with a six-month course of antibiotic treatment. While “cure” means the bacteria has been stopped in its tracks, it unfortunately does not mean one’s lungs are back to how they were before you got sick. As Allwood points out, TB does not end with treatment.
“It’s a lifetime of functional impairment and/or symptoms, and this is not communicated nor acknowledged by healthcare funders or planners, nor told to patients when they start their TB treatment. Also, there’s been no systematic assessment of these patients at the end of care, so that they know their new baseline. It’s a huge problem that there are no resources allocated to manage this,” he says.
What it is
As explained at the three-day Stellenbosch symposium, post-TB impairment has a spectrum of severity and presentation, 90% of it affecting the lungs (posing a four-fold risk of lung cancer), but also impacting other organs. It can also manifest as meningitis, residual neurology, infertility (pelvic TB), or chronic intestinal abnormalities, plus increased cardiovascular risk. People living with these after-effects complain of a lack of enduring care, ongoing stigma, depression and post-traumatic stress disorder.
Allwood says the cause of post-TB disease is a combination of what the body does to itself in trying to get rid of TB (fibrosis, inflammation and destruction of internal organs and tissue) and delays in treatment and/or poor drug adherence. Until around a decade ago, drug-resistant forms of TB were often treated with medicines that came with a high risk of hearing loss.
Some people with post-TB impairment may not display any symptoms, but others can experience chronic coughing, recurrent infections, shortness of breath and coughing up blood.
“There is no single validated assessment test. At present, it’s a composite of lung function, chest radiology and usually a six-minute performance test like walking. There’s a huge amount of destruction that happens when trying to remove the TB, and it’s irreversible and persistent,” explains Allwood.
Once a diagnosis has been made, he says there are few treatment options.
Allwood, who started the first dedicated post-TB clinic in South Africa, ascribes the paucity of data on post-TB to a lack of capacity in the hardest-hit low- and middle-income countries and a lack of awareness in the least affected high-income countries.
“We’re so busy drowning in patients that we don’t have the capacity to do the research and generate the needed data to treat the patients. It’s a classic public health situation, akin to jumping in a river and rescuing people one by one, when you actually need to be upstream repairing the bridge where they’re falling in,” he says.
Large numbers
As of 2020, about 155 million people globally have survived TB and are still alive. Many more would have survived TB and died of other causes. The 155 million is roughly one out of every fifty people on the planet. To put it in perspective, only eight countries have populations greater than 155 million.
Based on figures published by Thembisa, the leading mathematical model of HIV and TB in South Africa, Spotlight calculates that there are around 3.6 million adults alive in South Africa who have previously been sick with TB.
Data shared at the symposium showed that between 10% and 15% of this survivor population will have severe lung impairment, while up to 60% would have an abnormality in the amount and speed of air a person can inhale and exhale. According to our back-of-the-envelope calculations, this means that between 360 000 and 500 000 TB survivors in South Africa are living with severe lung impairment.
According to a landmark study published in 2021, around 47% of the health burden due to TB occurs in people who have already been cured. In other words, many of the health problems linked to TB show up in the years after someone has been cured. While there is often some lung recovery in the first nine months after treatment completion, for many, the TB-related lung damage remains a problem for the rest of their lives.
One solution is to diagnose more people with TB and get them onto treatment more quickly, so that the bug has less time to do damage. Boosting the diagnosis of TB is already a health department priority, following evidence that suggests TB could be spread by people who have mild or no symptoms. Of all the people found to have TB in the country’s first national TB prevalence survey conducted in 2018, 58% did not report any TB symptoms at the time.
What to do
When asked what is needed, Allwood stresses that a top priority should be to figure out how best to assess patients after treatment and then design targeted interventions to address post-TB symptoms.
He says the South African government and other funders of health services could be doing more, such as programmatically assessing people at the end of TB treatment. “We need to know who should be prioritised for ongoing care,” he says. Such screening might include a mix of breathing tests, X-rays, checking for symptoms, and evaluating physical abilities.
Allwood also argues that future studies of TB treatments should include ways to measure the long-term effects of the disease. He believes all new TB treatment trials should track lung function and compare different treatment options to see which ones help prevent health problems after TB.
“It’s a bit like having a stroke intervention trial where the only outcome is dead or alive – and not worrying about impairment!” he says.
‘A silent crisis’
Professor Norbert Ndjeka, the top TB official in the National Department of Health, describes post-TB lung disease as “a silent crisis”.
He tells Spotlight that the department had started implementing a post TB care policy for drug resistant TB patients but had not seen adequate uptake.
“Most patients don’t come back after [TB] treatment,” he says. “Our targeted universal TB testing policy (TUTT), adopted in 2022 when we endorsed our TB recovery plan, also requires a medical examination of all TB patients six months and twelve months after treatment completion.”
However, Ndjeka notes that the system used to manage TB and HIV patient information in the public healthcare sector does not record this data.
Ndjeka agrees with Allwood that there is an urgent need for a more precise definition and diagnostic criteria for post-TB lung disease. He also concurs that the inclusion of lung health outcomes as part of current and future TB treatment trials would help make it a less neglected epidemic among TB survivors. He says children and adolescents should be included in all post-TB disease studies because they are affected for many years after treatment.
He says it is important for the World Health Organisation to approve clear guidelines for post-TB lung disease and for a global team to define the condition and help guide how countries respond to it.
“Political leadership needs to integrate post-TB care into national agendas. We can no longer afford to cure TB but ignore its aftermath. Let’s act – through research, policy, and health systems reform – to ensure TB survivors don’t just live but thrive,” he says.
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Survivor stories
Several TB survivors shared their harrowing journeys at the symposium.
While working as a dietician at a public hospital in the Eastern Cape in 2012, Ingrid Schoeman got multi-drug-resistant (MDR) TB, which is a form of the disease that is resistant to two of the standard antibiotics used to treat TB. The MDR-TB treatment that she took caused her liver to fail, and she spent 75 days in hospital, including a month in a coma in the ICU. Her condition was so serious that her family was called in to say goodbye, but she pulled through.
“It felt like the nausea, vomiting and diarrhoea would never end,” recalls Schoeman, who is now the director of advocacy organisation TB Proof. “I lost twenty kilograms, my hair fell out, my eye colour changed – but I was showered with kindness and support from family, friends and hospital staff. Nevertheless, I felt overwhelmed and wanted to give up. It made me think: how do majority of people in South Africa, who do not even have food on the table to eat, get through this, especially with long-term impairment?”
Phumeza Tisile had to give up her studies when she was diagnosed with TB in 2010. She developed MDR-TB and then extensively drug-resistant TB – TB that is resistant to even more antibiotics than MDR-TB. While she was eventually cured after three years, she suffered hearing loss as a side-effect of one of the treatments (that has since been phased out). In 2015, she underwent cochlear implant surgery to restore her hearing.
“TB is curable, but the treatment is horrible – I had to take it to stay alive. It wasn’t the end of the world; I tell other TB survivors there’s life after TB, even if it’s difficult,” says the research assistant who also volunteers at TB Proof.
Tisile was central to a successful campaign to replace antibiotic injections that can cause hearing loss with bedaquiline – a safer antibiotic that is taken orally and does not impact hearing.
“Once cured you have the voice to influence research and change, making sure it’s better for the next person diagnosed with TB,” she says.
This article was first published by Spotlight. Additional reporting by Marcus Low.
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