This World TB Day, we bring you the voices of those on the frontlines of the fight against tuberculosis from the Western Cape in South Africa. In the last twenty years 79 million lives globally have been saved through tuberculosis (TB) prevention, testing and treatment services, this progress as noted in a WHO report has been driven by critical foreign aid, especially in low- and middle- income countries (LMICs). The recent funding cuts could jeopardise the progress as global supply chains are affected and the essential work of organisations like Living Hope who have, in the last months, been forced to reduce their workforce but continue as best they can to work tirelessly to bring treatment and care to their communities. 

The Role of Community Health Workers 

In Masiphumelele, community health workers (CHWs) visit at least 12 patients per day, providing not just TB treatment support but also care for HIV, diabetes, hypertension, and other chronic illnesses. “With our TB clients we do pill counts to check if patients have taken their medication,” explains Sister Gillian Sharpe, who oversees TB care. “We educate about ventilation, but it’s hard when people live in overcrowded homes with no windows. Winters are cold and rainy, and kerosene fires are used for warmth despite the dangerous fumes.” 

CHWs play a critical role in patient adherence, tracking those who stop taking their medication and bringing them back into care. “We bargain with them, educate them, because stopping treatment can lead to multi-drug-resistant (MDR) TB, and worse, extensively drug-resistant (XDR) TB,” explains Sinesipho Ndabambi  from Living Hope. “But stigma is a big problem.” 

From Right to left: Nomaphelo Ngqame, Sinesipho Ndabmbi, Sr Vuyiseka Mathambo, Ntombizandile Catazo,  Dr Rashmika Deeplal

A Survivor’s Story: Nomaphelo Fight Against TB 

Nomaphelo Ngqame, now a CHW, contracted MDR-TB while living in an informal settlement. “At the hospital, people died in my ward every day. The nurses gave us medicine, but they didn’t always check if we took it.” After four months in the hospital, Nosisi returned home to find her family treating her differently. “My sister made me eat from a yogurt container, separate from them.” With no food to take her medication with, she suffered severe nausea. “I told God, ‘You can take me now, I don’t mind.”  

Nomaphelo’s treatment lasted 18 months, requiring her to take 17 pills a day, often on an empty stomach. “I only knew the colours of the pills. I took them with tea to keep them down that was my trick.” She persevered for her children. “I was so thin that when a bus passed, I feared I would be blown over. But now I am healthy, and I help others complete their treatment.” 

The Health System’s Struggles 

Dr. Rashmika Deeplal from the Desmond Tutu Health Foundation highlights South Africa’s staggering TB burden. “We are one of 30 high-burden TB countries, with 280,000 new cases in 2022 and 55,000 TB-related deaths—one death every ten minutes. This is despite TB being preventable and curable.” 

While deaths have declined by 17% since 2015, the country remains far from the Sustainable Development Goal target of 90% reduction. “We face three TB burdens: drug-susceptible TB, drug-resistant TB, and HIV co-infection,” explains Dr. Deeplal. “Six million South Africans are on ARVs, yet diagnosing TB in people with HIV remains difficult. Standard tests like GeneXpert and sputum microscopy have lower accuracy in HIV-positive patients, leading to delays and misdiagnosis.” 

MDR-TB remains a serious challenge, though treatment is improving. “Previously, MDR-TB treatment lasted 18 months, often with painful injections. Now, we have a six-month oral regimen, reducing pill burden and side effects.” 

However, the health system is under immense strain. “Primary healthcare clinics are overcrowded, understaffed, and lack basic resources. Doctors often experience compassion fatigue, and patients travel for hours to be seen, only to receive rushed consultations. Holistic care—including mental health support and food security—often falls through the cracks.”

The Hidden Costs of TB 

For many, TB treatment is not just a medical burden, but it might become a financial one, with loss of revenue because many times, patients are unable to work. Sister Vuyiseka Mathambo, who works in the TB room at Masiphumelele Clinic, contracted TB while treating patients. “I was able to seek private care because of my health insurance, but the cost was 240,000 Rand ($13,200), including surgery that I needed, this amount is out of reach for so many in South Africa so not something we can face. Even in the private sector, the stigma was intense, people avoided me, nurses rushed to give us meds and left quickly.” 

GeneXpert, a critical diagnostic tool, is prohibitively expensive. “We can’t afford to use it for everyone,” says Dr. Deeplal. “Instead, we rely on cheaper, less accurate tests, increasing the risk of missed diagnoses.” 

24 year-old TB patients struggled to cope with her TB diagnosis

Stigma and Mental Health Challenges 

Social worker Ntombiyandile Catazo works closely with TB patients, addressing the stigma that drives many into isolation. “Patients hide their diagnosis, fearing rejection. Some give fake addresses so we can’t trace them. Many are unemployed, living in poverty, and struggling with substance abuse.” 

Mental health support is critical. “Many patients are in denial. I tell them TB is not the end of the world. I’ve helped people finish treatment, rebuild their lives, and even apply for jobs.” But resources are limited. “We need more counsellors and better integration of mental health services.” 

Moving Forward: The Need for Change 

Despite challenges, there is hope. Improved treatments for MDR-TB, expanded TB prevention therapy (TPT), and wider eligibility criteria allowing more close contacts prevention therapy are positive steps. “Now, anyone exposed to TB is eligible for TPT, not just high-risk groups,” says Dr. Deeplal. “And with shorter TPT regimens, we are making prevention more accessible.” 

Another exciting perspective is the increasing number of long-acting tools for tuberculosis control in the pipeline, which could significantly improve the delivery and impact of these critical interventions, while decreasing burden on the communities. 

Community health worker carrying out a home visit

However, the fight against TB remains underfunded, and lives are at risk. A recent WHO report warns that funding cuts to TB programs will endanger millions, threatening hard-won gains in the fight against the disease. Community health programs like Living Hope stretch resources as far as they can, but without sustained support, treatment gaps will grow.  

South Africa has been an early adopter of new TB tools, from diagnostics like GeneXpert Ultra and the urinary lipoarabinomannan (LAM) test to improved treatment regimens for adults and children. The country is also participating actively in the development of new solutions. The Department of Science, Technology and Innovation (DSTI) and the South African Medical Research Council (SAMRC), through the Strategic Health Innovation Partnerships (SHIP), are driving innovation in TB drug discovery, diagnostics and vaccines, recognising that a TB vaccine is essential to any long-term TB control strategy. Supporting vaccine discovery and development is now a priority, and the mRNA Technology Transfer Programme, co-led by WHO and MPP are working with the DSTI and SAMRC who are supporting and increasing investments in TB research, helping to build the ecosystem for TB vaccine R&D in the country together with Afrigen and South African Universities. 

On this World TB Day, let’s honour the resilience and dedication of community health workers who achieve so much with so little resources and who are the frontline hit by the funding cuts, since February seven team members of Living Hope have lost their jobs, and this will make it even harderfor them to serve the needs of their TB patients. Together, as partners, we will continue to support access to treatments in LMICs and the development of a vaccine to end TB. We owe it to those on the frontline and to the patients whose lives depend on it.