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News24
4 days ago
- Health
- News24
Missed, misunderstood, and deadly: A Cape Town family's heartbreak with hepatitis B
When Desmond Pedro discovered a strange hardness under his ribcage, he was just 30 and preparing for a fresh start on a government skills course. Little did he know that he would soon die of liver cancer caused by undetected hepatitis B. Spotlight spent time with his family and spoke to experts to uncover how this overlooked virus continues to claim lives. Desmond Pedro was getting ready to attend a course at a college in Bellville in Cape Town when he noticed a hardness under his ribcage. The 30-year-old unemployed father of two small children hoped to learn skills on the government-sponsored boiler-making course. The strange condition worried him. When Desmond first went to a clinic, nurses said it wasn't serious and gave him laxatives for constipation. He returned three times and got the same response. On his fourth visit, Desmond's wife went with him, and she insisted on a scan. Two weeks later, while on his way to college, he returned to receive the results. His older brother, Mario tells the story: 'When he arrived, the clinic staff wouldn't let him leave. An ambulance took him to Tygerberg Hospital. We visited him that night but were told nothing. We felt helpless.' About a week later, Desmond asked Mario to meet him at Tygerberg's oncology unit, where a doctor delivered the news of his diagnosis. 'When I arrived, he was in agony and couldn't stand up straight. This had all happened within two to three weeks. A porter brought a wheelchair, and we went into the doctor's office where the doctor told us hepatitis B had brought on Desmond's liver cancer.' Hepatitis means that the liver is swollen or irritated. This can happen for many reasons, such as infections from viruses or bacteria, parasites, injuries, or when the body's immune system mistakenly attacks the liver. Viral hepatitis is a type of liver inflammation caused by a virus. There are five main types: A, B, C, D and E. As Spotlight previously reported, new, highly effective cures for hepatitis C are slowly becoming more widely available in South Africa. Where did it come from? Until Desmond's cancer diagnosis, he had no idea that he was carrying the hepatitis B virus in his body, nor where he contracted it. The virus is transmitted from person to person through blood, semen or other body fluids. It can, for instance, be passed from pregnant women infected with the hepatitis B virus to their babies during childbirth, through sexual contact with an infected person, sharing of needles carrying traces of infected blood, and accidental needlestick injuries in health workers working with people who have the virus. After Desmond's diagnosis, his entire family were tested. Mario said: Both myself and my youngest brother, Johan tested positive for hepatitis B. To this day, we don't know where we got it or if we ever had the vaccine. 'At the time, I was 33. My mother was negative, as were our wives and all the children. For Desmond, it was too late.' Once infected, some people have strong enough immune systems to fight off the infection and usually clear it within six months. This is called acute or short-term infection. People who get infected as adults normally have acute infections. In long-term or chronic cases, it lasts more than six months and can lead to liver failure, liver cancer or cirrhosis - a condition where scar tissue has replaced healthy tissue to such an extent that the liver can no longer function. The younger a person is when they contract the virus, the higher their risk of the condition becoming chronic, particularly in the case of newborn babies or children under five. In most cases, people with chronic infection show no symptoms for years until they become seriously ill from liver disease. A silent killer One of the reasons that viral hepatitis can go undetected, as it did for Desmond, is that it is often asymptomatic. Symptoms, for those who do get them, can start as soon as two weeks after infection and include stomach pain, joint pain, fever, extreme fatigue, dark urine and jaundice - a yellowing of the skin and whites of the eyes. Professor Mark Sonderup, Associate Professor in the Department of Medicine and Division of Hepatology at the University of Cape Town, explains that with chronic inflammation in the liver, the body's attempt to heal the inflammation drives scarring, or fibrosis, of the liver. Over 10, 20 or 30 years, he says, there's a serious risk of cirrhosis. ALSO READ | Stem cell transplant recovery hinges on living conditions - transplant donor organisation 'The other risk of hepatitis B, which increases dramatically as the scarring worsens, is that because the virus is a DNA virus and inserts itself into the DNA of the liver cell, it dramatically increases the risk of liver cancer which is why hepatitis B accounts for most liver cancer in the world.' Sonderup says hepatitis B is endemic in South Africa and the region. He cites figures pegging the country's chronic infection rate at just below 5%, which suggests there are in the region of three million people living with the infection in South Africa. Most cases can be treated Chronic infection can usually be treated successfully with antiviral medicines if diagnosed in time. These medicines have to be taken for life since they suppress, but do not eliminate the virus. For acute infection there are much fewer treatment options. Those with serious liver damage often need a liver transplant. Since their diagnosis, Mario and Johan have been going to the Groote Schuur Liver Clinic where he says they are in good hands. 'They've been there for us from the start,' says Mario. The brothers are both on tenofovir, an anti-retroviral used to treat chronic hepatitis B infection. READ MORE | Why most people in South Africa can't get the shingles vaccine 'We take one tiny tablet a day, which suppresses our viral load and has no side effects. I take my tablet religiously at the same time every night.' Tenofovir is also part of standard HIV treatment in South Africa. As such, it is taken by more than five million people in the country, some of whom will happen to have undiagnosed hepatitis B infection. Sadly, Desmond's diagnosis came too late for antiviral treatment to save him. Mario recalls: I'll never forget the look on Desmond's face when the doctor said there was nothing they could do. 'The liver cancer was aggressive. He died at home about four weeks later. The time between getting his results and passing away was about two months.' It is for this reason that Mario has become such a passionate advocate for hepatitis B testing. 'All it takes is a simple blood test, and if it's caught in time, you take one small tablet daily. There are no side effects and you're good to go,' he says. Mario reckons nurses testing for HIV should be testing for hepatitis B at the same time. A highly effective vaccine One piece of good news is that many people in South Africa, especially those younger than 30 years of age, would have been vaccinated against the hepatitis B virus as babies. The South African government began rolling out the vaccine in 1995, starting with a three-dose schedule for babies, administered at 6, 10, and 14 weeks. 'It took a while to reach full coverage across the entire country. To date, our numbers lag a little behind, in that full three dose coverage is somewhere in the mid 80 percent in South Africa,' says Sonderup. 'This is pretty decent, except that we do have babies born to women who are inadvertently chronically infected, and there's a full six-week period before the first dose of vaccine is given.' READ MORE | The US funded 40% of SA's data capturers: Why losing them is so dangerous In other words, there's a six-week gap before babies receive their first hepatitis B vaccine, leaving them unprotected during that time. This is why Sonderup recommends giving a vaccine birth dose within the first 24 hours after birth alongside the standard polio and BCG vaccines all newborns receive. 'This would be followed by the second, third and fourth doses at 6,10 and 14 weeks. This has been shown to completely shut down that potential six-week period where a baby may be exposed,' he says. A phased approach Dr Kgomotso Vilakazi-Nhlapo, the top hepatitis official in the National Department of Health, agrees that a birth dose is important. However, she says that due to resource challenges, the department has opted for a phased approach. 'Instead of starting with the implementation of the universal hepatitis B birth dose vaccination, we test all pregnant women for the hepatitis B virus, treat those who are hepatitis B positive (and HIV negative) and offer the hepatitis B birth dose vaccine to newborn babies of pregnant women who tested positive for hepatitis B,' she says. According to Vilakazi-Nhlapo, this approach was implemented in April 2023 in all public health facilities but by the end of December 2024, they were only testing about 50% of pregnant women. READ MORE | Common weed shows potential to fight cancer, UJ researchers find 'This meant that women among the 50 percent who were not tested could be positive for hepatitis B and be transmitting the infection to their babies,' she says. 'Of course, it would be preferable to give a universal birth dose to all newborns, but, unfortunately, the budget and human resources remains an issue.' Vilakazi-Nhlapo estimates that with around a million births per year and hepatitis B prevalence of around 5%, every year in the region of 50 000 women living with the virus are giving birth in South Africa. What to do Sonderup says the solutions to South Africa's hepatitis B problem are neither complex nor overly expensive. 'Firstly,' he says, 'we need to fully implement the universal birth dose vaccination; secondly, we need to ensure children complete their vaccine schedule in total, thirdly we need to screen pregnant woman and link them to additional care.' He also says that in a country where almost 5% of people are living with the virus, everyone should be screened for hepatitis B at least once as we do with regular HIV testing. 'This can be done through a simple finger prick test and it's not expensive. People should at least know their status,' Sonderup says. South Africa's key hepatitis B policy document is the viral hepatitis treatment guidelines published in 2019. Sonderup, who was involved in the development of the guidelines, is concerned about its implementation. He blames 'policy inertia' and competition for limited resources for the country not having made greater progress against hepatitis B. 'But we can actually do a great deal with not very much, with significant impact, to eliminate a virus that continues to cause significant havoc,' he says. 'A shortage of resources, staff, and skills' For her part, Vilakazi-Nhlapo blames a lack of 'resources, staff, and skills' for there not being more progress. She says there is only one other person working with her on hepatitis at the national level, and no dedicated staff at provincial health departments. 'We work mainly with NGOs and civil society. Provincial physicians have helped us greatly to do our work but it's not enough,' Vilakazi-Nhlapo says. 'There is still insufficient knowledge both among healthcare workers and within communities about hepatitis B. For now, patients with hepatitis B are referred to hospitals … but the reality is that, if primary healthcare staff are managing HIV patients, they can manage hepatitis B patients,' she says. She adds that they are trying to integrate hepatitis into other health programmes, such as those for maternal and child health. 'Everyone should know their status' Back in Cape Town, Mario, now 45, says he feels healthy apart from the normal aches and pains associated with his age. He has become an advocate for more awareness about hepatitis B. 'We'd never have known we had it if this hadn't happened to my brother. It's a silent killer. Someone could be dying of it right now without knowing. Everyone should know their status,' he says.
Eyewitness News
6 days ago
- General
- Eyewitness News
Missed, misunderstood, and deadly: A Cape Town family's heartbreak with hepatitis B
Desmond Pedro was getting ready to attend a course at a college in Bellville in Cape Town when he noticed a hardness under his ribcage. The 30-year-old unemployed father of two small children hoped to learn skills on the government-sponsored boiler-making course. The strange condition worried him. When Desmond first went to a clinic, nurses said it wasn't serious and gave him laxatives for constipation. He returned three times and got the same response. On his fourth visit, Desmond's wife went with him, and she insisted on a scan. Two weeks later, while on his way to college, he returned to receive the results. His older brother, Mario tells the story: 'When he arrived, the clinic staff wouldn't let him leave. An ambulance took him to Tygerberg Hospital. We visited him that night but were told nothing. We felt helpless.' About a week later, Desmond asked Mario to meet him at Tygerberg's oncology unit, where a doctor delivered the news of his diagnosis. 'When I arrived, he was in agony and couldn't stand up straight. This had all happened within two to three weeks. A porter brought a wheelchair, and we went into the doctor's office where the doctor told us hepatitis B had brought on Desmond's liver cancer.' Hepatitis means that the liver is swollen or irritated. This can happen for many reasons, such as infections from viruses or bacteria, parasites, injuries, or when the body's immune system mistakenly attacks the liver. Viral hepatitis is a type of liver inflammation caused by a virus. There are five main types: A, B, C, D and E. As Spotlight previously reported, new, highly effective cures for hepatitis C are slowly becoming more widely available in South Africa. WHERE DID IT COME FROM? Until Desmond's cancer diagnosis, he had no idea that he was carrying the hepatitis B virus in his body, nor where he contracted it. The virus is transmitted from person to person through blood, semen or other body fluids. It can, for instance, be passed from pregnant women infected with the hepatitis B virus to their babies during childbirth, through sexual contact with an infected person, sharing of needles carrying traces of infected blood, and accidental needlestick injuries in health workers working with people who have the virus. After Desmond's diagnosis, his entire family were tested. 'Both myself and my youngest brother, Johan tested positive for hepatitis B. To this day, we don't know where we got it or if we ever had the vaccine,' says Mario. 'At the time, I was 33. My mother was negative, as were our wives and all the children. For Desmond, it was too late.' Once infected, some people have strong enough immune systems to fight off the infection and usually clear it within six months. This is called acute or short-term infection. People who get infected as adults normally have acute infections. In long-term or chronic cases, it lasts more than six months and can lead to liver failure, liver cancer or cirrhosis – a condition where scar tissue has replaced healthy tissue to such an extent that the liver can no longer function. The younger a person is when they contract the virus, the higher their risk of the condition becoming chronic, particularly in the case of newborn babies or children under five. In most cases, people with chronic infection show no symptoms for years until they become seriously ill from liver disease. A SILENT KILLER One of the reasons that viral hepatitis can go undetected, as it did for Desmond, is that it is often asymptomatic. Symptoms, for those who do get them, can start as soon as two weeks after infection and include stomach pain, joint pain, fever, extreme fatigue, dark urine and jaundice – a yellowing of the skin and whites of the eyes. Professor Mark Sonderup, Associate Professor in the Department of Medicine and Division of Hepatology at the University of Cape Town, explains that with chronic inflammation in the liver, the body's attempt to heal the inflammation drives scarring, or fibrosis, of the liver. Over ten, twenty or thirty years, he says, there's a serious risk of cirrhosis. Sonderup says hepatitis B is endemic in South Africa and the region. He cites figures pegging the country's chronic infection rate at just below 5% which suggests there are in the region of three million people living with the infection in South Africa. MOST CASES CAN BE TREATED Chronic infection can usually be treated successfully with antiviral medicines if diagnosed in time. These medicines have to be taken for life since they suppress, but do not eliminate the virus. For acute infection there are much fewer treatment options. Those with serious liver damage often need a liver transplant. Since their diagnosis, Mario and Johan have been going to the Groote Schuur Liver Clinic where he says they are in good hands. 'They've been there for us from the start,' says Mario. The brothers are both on tenofovir, an anti-retroviral used to treat chronic hepatitis B infection. 'We take one tiny tablet a day, which suppresses our viral load and has no side effects. I take my tablet religiously at the same time every night.' Tenofovir is also part of standard HIV treatment in South Africa. As such, it is taken by more than five million people in the country, some of whom will happen to have undiagnosed hepatitis B infection. Sadly, Desmond's diagnosis came too late for antiviral treatment to save him. 'I'll never forget the look on Desmond's face when the doctor said there was nothing they could do,' Mario recalls. 'The liver cancer was aggressive. He died at home about four weeks later. The time between getting his results and passing away was about two months.' It is for this reason that Mario has become such a passionate advocate for hepatitis B testing. 'All it takes is a simple blood test, and if it's caught in time, you take one small tablet daily. There are no side effects and you're good to go,' he says. Mario reckons nurses testing for HIV should be testing for hepatitis B at the same time. A HIGHLY EFFECTIVE VACCINE One piece of good news is that many people in South Africa, especially those younger than 30 years of age, would have been vaccinated against the hepatitis B virus as babies. The South African government began rolling out the vaccine in 1995, starting with a three-dose schedule for babies, administered at 6, 10, and 14 weeks. 'It took a while to reach full coverage across the entire country. To date, our numbers lag a little behind, in that full three dose coverage is somewhere in the mid 80 percent in South Africa,' says Sonderup. 'This is pretty decent, except that we do have babies born to women who are inadvertently chronically infected, and there's a full six-week period before the first dose of vaccine is given.' In other words, there's a six-week gap before babies receive their first hepatitis B vaccine, leaving them unprotected during that time. This is why Sonderup recommends giving a vaccine birth dose within the first 24 hours after birth alongside the standard polio and BCG vaccines all newborns receive. 'This would be followed by the second, third and fourth doses at 6,10 and 14 weeks. This has been shown to completely shut down that potential six-week period where a baby may be exposed,' he says. A PHASED APPROACH Dr Kgomotso Vilakazi-Nhlapo, the top hepatitis official in the National Department of Health, agrees that a birth dose is important. However, she says that due to resource challenges, the department has opted for a phased approach. According to Vilakazi-Nhlapo, this approach was implemented in April 2023 in all public health facilities but by the end of December 2024, they were only testing about 50% of pregnant women. 'This meant that women among the 50 percent who were not tested could be positive for hepatitis B and be transmitting the infection to their babies,' she says. 'Of course, it would be preferable to give a universal birth dose to all newborns, but, unfortunately, the budget and human resources remains an issue.' Vilakazi-Nhlapo estimates that with around a million births per year and hepatitis B prevalence of around 5%, every year in the region of 50 000 women living with the virus are giving birth in South Africa. WHAT TO DO Sonderup says the solutions to South Africa's hepatitis B problem are neither complex nor overly expensive. 'Firstly,' he says, 'we need to fully implement the universal birth dose vaccination; secondly, we need to ensure children complete their vaccine schedule in total, thirdly we need to screen pregnant woman and link them to additional care.' He also says that in a country where almost 5% of people are living with the virus, everyone should be screened for hepatitis B at least once as we do with regular HIV testing. 'This can be done through a simple finger prick test and it's not expensive. People should at least know their status,' Sonderup says. South Africa's key hepatitis B policy document is the viral hepatitis treatment guidelines published in 2019. Sonderup, who was involved in the development of the guidelines, is concerned about its implementation. He blames 'policy inertia' and competition for limited resources for the country not having made greater progress against hepatitis B. 'But we can actually do a great deal with not very much, with significant impact, to eliminate a virus that continues to cause significant havoc,' he says. 'A SHORTAGE OF RESOURCES, STAFF AND SKILLS' For her part, Vilakazi-Nhlapo blames a lack of 'resources, staff, and skills' for there not being more progress. She says there is only one other person working with her on hepatitis at the national level, and no dedicated staff at provincial health departments. 'We work mainly with NGOs and civil society. Provincial physicians have helped us greatly to do our work but it's not enough,' Vilakazi-Nhlapo says. 'There is still insufficient knowledge both among healthcare workers and within communities about hepatitis B. For now, patients with hepatitis B are referred to hospitals … but the reality is that, if primary healthcare staff are managing HIV patients, they can manage hepatitis B patients,' she says. She adds that they are trying to integrate hepatitis into other health programmes, such as those for maternal and child health. 'EVERYONE SHOULD KNOW THEIR STATUS' Back in Cape Town, Mario, now 45, says he feels healthy apart from the normal aches and pains associated with his age. He has become an advocate for more awareness about hepatitis B. 'We'd never have known we had it if this hadn't happened to my brother. It's a silent killer. Someone could be dying of it right now without knowing. Everyone should know their status,' he says. This article first appeared on Spotlight. Read the original article here.
IOL News
21-05-2025
- Health
- IOL News
Understanding foreign body aspiration: a hidden danger for children during Child Protection Month
Professor Pierre Goussard Image: Supplied As Child Protection Month draws to a close, South Africans are reminded that safeguarding a child is not limited to protecting them from abuse, neglect or emotional trauma. It also includes defending them against hidden yet deadly physical dangers – such as foreign body aspiration, a condition that is tragically common and often misdiagnosed. 'Foreign body aspiration is an important factor or condition to discuss during Child Protection Month. It is a condition that can cause significant morbidity and mortality. Children can die as a result of inhaling foreign bodies,' said Professor Pierre Goussard, Head of Clinical Unit: Paediatric Pulmonology and PICU at Tygerberg Hospital (TBH) and Stellenbosch University, and Chair of the Tygerberg Hospital Children Trust. Foreign body aspiration occurs when a child accidentally inhales an object into their airway. It can happen in an instant – while eating, playing, or crawling – and is especially common in children under three. At this age, kids explore their environment by putting things in their mouths, have underdeveloped chewing abilities, and often eat while moving or playing. Prof. Goussard completing one of his many races Image: Supplied Video Player is loading. Play Video Play Unmute Current Time 0:00 / Duration -:- Loaded : 0% Stream Type LIVE Seek to live, currently behind live LIVE Remaining Time - 0:00 This is a modal window. Beginning of dialog window. Escape will cancel and close the window. Text Color White Black Red Green Blue Yellow Magenta Cyan Transparency Opaque Semi-Transparent Background Color Black White Red Green Blue Yellow Magenta Cyan Transparency Opaque Semi-Transparent Transparent Window Color Black White Red Green Blue Yellow Magenta Cyan Transparency Transparent Semi-Transparent Opaque Font Size 50% 75% 100% 125% 150% 175% 200% 300% 400% Text Edge Style None Raised Depressed Uniform Dropshadow Font Family Proportional Sans-Serif Monospace Sans-Serif Proportional Serif Monospace Serif Casual Script Small Caps Reset restore all settings to the default values Done Close Modal Dialog End of dialog window. Advertisement Next Stay Close ✕ Nuts, seeds, popcorn, Lego pieces, toy whistles, and lollipops are just some of the hazardous items commonly involved. The result can be immediate choking, turning blue, or struggling to breathe. In other cases, symptoms are more subtle – persistent coughing, chest infections or even signs that mimic tuberculosis. 'A typical acute history would be someone playing and then suddenly having a choking episode, turning blue, and developing respiratory symptoms,' said Goussard. 'There should be significant awareness of this condition. Especially the age groups and the clinical presentations of the life-threatening event.' He stressed the importance of prevention: supervise children while eating and playing; avoid giving small children hard foods, popcorn, or any kind of nut; keep small toy parts out of reach; cut food into small, manageable pieces. This vital message forms part of a broader awareness and fundraising campaign led by Goussard. He is currently raising funds to purchase an Olympus bronchoscope for the Department of Paediatrics and Child Health at Tygerberg Hospital. 'The hospital acts as a referral centre for complicated cases, including diseases such as tuberculosis, HIV, complicated pneumonia, and complicated respiratory pathologies and congenital lesions. Prof. Goussard needs your help Image: Supplied 'Bronchoscopes are used to investigate the airways of sick very small babies and children to improve the diagnostic abilities for tuberculosis and malignancy, which are often diagnosed late. It is also used for interventional procedures. "We teach many SA doctors, as well as those from other African countries, who are then able to assist their communities on their return home. Children from these neighbouring countries are often brought to the TBH to receive specialised medical care," he explained. Goussard is combining his passion for paediatrics with his love of running to fundraise for this cause. 'I am an avid marathon runner, having completed 50-plus marathons, including the Paris (x4), Berlin (x2), London (x1), Rome (x3), Prague (x1) marathons, as well as the Stoos Trail (x2) and the ultra-marathon of Gornergrat Zermatt in Switzerland. 'Please support this fundraising campaign by donating for every kilometre that I will run.' So far, he has raised 9% of his R400 000 target. To contribute, visit his Back-a-Buddy page: Weekend Argus
News24
12-05-2025
- Entertainment
- News24
LottoStar and Kfm 94.5 Present May Money Madness – Big Wins, Bigger Impact on Air!
Get ready to crank up the volume because LottoStar and Kfm 94.7 are bringing you May Money Madness – a thrilling on-air competition where players will walk away with a share of R1 Million in cash, every weekday, from 12 – 30 May! Listeners across the Western Cape can take part by entering and placing a bet on And here's the exciting part — when Kfm 94.5 calls and you answer, you'll receive R2,500 instantly! Not only do you get a chance to win big, but you'll also be supporting a greater cause – Save7, an organisation raising awareness on organ donation and transforming lives through groundbreaking initiatives like the LifePod – a first-of-its-kind donor ICU saving viable organs at Tygerberg Hospital in the Western Cape. But this isn't your average radio competition. In true LottoStar style, there's an unexpected twist coming – a surprise that could change everything for one lucky player. Let's just say… something golden is about to shine. 120 Golden Tickets will be won and one lucky player will walk away with R1 Million in cash in the Grand Finale, at the end of the competition. Tune into Kfm 94.5 throughout May for all the live action, big reveals and the heart-stopping final moment when someone becomes an instant millionaire. 'This competition is about more than just big wins – it's about real impact,' said Maria Pavli, Chief Marketing Officer at LottoStar. 'We're giving South Africans a moment they'll never forget while supporting a cause that truly matters.' Place your bets. Tune in. And stay ready – because May Money Madness is about to take over your radio.
News24
06-05-2025
- Health
- News24
Large numbers of TB survivors in SA struggling with lung damage, experts say
There are more than 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 TB-cured people, 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, which 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 the sickness. 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 base line. 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. IN THE SPOTLIGHT | SA has started a TB revolution – can we see it through? '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% will 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, 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 into treatment more quickly so the bug has less time to do damage. Boosting 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 designing targeted interventions to address post-TB symptoms. He says the South African government and other health service funders 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. READ MORE | 1.25m deaths in one year: Motsoaledi highlights TB's deadly toll and urges global action 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 Organization 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. 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 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 the 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?' ALSO READ | SA researcher finds a compound in mushrooms that may help in the fight against TB 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. - Additional reporting by Marcus Low.
