• The role of CSO networks in managing TB

Tuberculosis (TB) has a long history as an infectious disease with a high mortality rate. Once considered a significant threat to public health, TB is now entirely curable, treatable, and manageable. 

Over the years, advancements in medical science, particularly in the development of effective antimicrobial drugs and comprehensive treatment programmes, have transformed the outlook for individuals diagnosed with TB. This shift reflects the progress made in combating the infection, turning a once-deadly disease into a manageable health concern.

Active, drug-sensitive TB disease is treatable with a standard six-month course of four antimicrobial drugs, which are provided free of charge through the National Programme for Tuberculosis Control and Chest Diseases (NPTCCD). However, despite the disease being affordably treatable, Sri Lanka still reports two TB-related deaths each day, amounting to over 800 deaths per year. 

Treatment for TB at the national level from 2023 to 2025 (a three-year-span) has been made possible by the Global Fund to Fight AIDS, Tuberculosis, and Malaria, which has invested a sum of $ 3 million for TB prevention in Sri Lanka, with the NPTCCD being the primary recipient of this fund. The State utilises these funds to sustain and enhance TB prevention services, much in the same way as the National STD/AIDS Control Programme (NSACP) works with the backing of the Global Fund. 

Part of what makes HIV and AIDS prevention and treatment in Sri Lanka so robust (the latest data estimates that around 3,600 people are living with HIV in the country, with the disease having claimed up to 100 lives to date) is the NSACP’s nearly equal partnership with Civil Society Organisations (CSOs) in the field. 

However, unlike the NSACP, the current mechanism for TB prevention and control to involve CSOs in service provision is not as well established – something which, with the impending establishment of a new Country Coordination Mechanism (CCM) by the Diversity and Solidarity Trust (DAST) Sri Lanka, is likely to change for the better. 

The importance of CSOs

The lack of CSO involvement in TB prevention and control thus far is not due to a lack of effort but rather due to the absence of a sufficiently developed ecosystem from the CSO side, with limited organisational capacity to collaborate with the State programme, unlike the HIV prevention movement. 

However, there are signs of change. Speaking to The Sunday Morning Brunch, NPTCCD Director Dr. Pramitha Shanthilatha emphasised on the importance of CSO involvement at the ground level, noting that these organisations possessed the capacity to reach hidden populations affected by TB: “CSOs are the link that supports us to work with the affected communities. They are imperative when it comes to awareness and also service provision.” 

Dr. Shanthilatha also highlighted the limitations of health workers like Public Health Inspectors (PHIs) and Public Health Midwives (PHMs), saying: “When it comes to CSOs, they are more engaged at the ground level and they operate in the manner of a peer group. As of now, CSOs provide a lot of service even in creating leaflets, conducting workshops, etc. in order to reach these hidden populations. These organisations are required in order to officially join the CCM.” 

CSOs also play an important role in maximising the impact of contact tracing to ensure complete coverage, along with the implementation of Directly Observed Therapy (DOT), which involves observing patients while they consume their TB medications. National guidelines advocate for DOT as a standard of care in TB treatment and it is widely employed by TB programmes across the island. 

However, despite the utilisation of the DOT strategy, the responsibility for treatment ultimately lies with the patient. Dr. Shanthilatha underscored the significance of effective awareness generation in conveying the importance of patient responsibility in adherence to treatment.

Amplifying TB prevention and control

DAST Sri Lanka Executive Director Roshan de Silva, who is also Project Manager of the Stop TB Project Sri Lanka, emphasised on the importance of CSOs in amplifying TB prevention. Acknowledging the commendable work of the State in TB control, de Silva however highlighted the inherent limitation of its capacity to reach the entire population. 

“The system is good and the State does incredible work; however, it is a simple reality that it does not have the capacity to reach the entire population, making it more likely to miss some people,” de Silva said, pointing out that not being able to reach the entire population could lead to discrepancies between national statistics and the actual number of TB patients. He underscored the urgency of addressing this gap, stating: “Especially given that TB is entirely curable, the fact that we have this many patients every year simply means that there remains a group that we are missing that will continue to carry the disease.”

Awareness plays a pivotal role in addressing TB, particularly among those with compromised immune systems, such as infants, the elderly, smokers, and those suffering from lung diseases. Given their vulnerability, these individuals are more susceptible to contracting TB. Moreover, TB is intricately linked to HIV due to the immunocompromised nature of those afflicted by the virus. Individuals receiving proper treatment for HIV have a significantly reduced risk of contracting TB, as their immune systems are being well taken care of.

In the past, only two CSOs – ChildFund and the Ceylon National Association for the Prevention of Tuberculosis (CNAPT) – have been actively engaged in TB prevention, indicating a lack of a robust network to bolster the movement. De Silva stressed on the necessity of establishing a comprehensive islandwide network to address this gap effectively. While health services are readily available, there exists a significant disparity concerning information dissemination, awareness campaigns, symptom recognition, and access to services. 

CSO networks can reach islandwide 

De Silva highlighted that in 2021, DAST Sri Lanka had recognised this critical gap in TB prevention efforts and initiated small-scale awareness programmes involving 20 CSO groups spread across the island. Acting as technical support, DAST has provided these CSO groups with a modest initial fund to sustain their awareness initiatives. De Silva noted that DAST had received invaluable support from the Asia Pacific Council of AIDS Service Organisations (APCASO), acknowledging the interconnectedness of HIV and TB. This ongoing support catalysed the burgeoning movement, which has rapidly expanded into a larger-scale endeavour.

He also elaborated on another initiative wherein they concentrated on three districts with the highest TB prevalence – Colombo, Ratnapura, and Gampaha – and established ‘TB Champions’ to liaise with Government TB clinics. In line with their efforts leading up to World TB Day, they have extended support for the establishment of TB networks across seven districts: Kandy, Matale, Anuradhapura, Matara, Galle, Ratnapura, and Kegalle. Nearly all of these districts have enlisted 20 smaller organisations per district, contributing to the formation of the ‘TB Eradication CSO Network’ comprising over 120 CSO organisations from across the island.

De Silva also pointed to their focus on ensuring the sustainability of these networks. Beyond mere connectivity with district chest clinics and State collaborations, they are actively empowering these organisations to reach self-sustainability through capacity building. “After all, these are volunteers, and since money matters when sustaining a movement, we are providing support in writing funding proposals, etc. as well,” he added.

Subsequent to the establishment of these networks on 24 March, World TB Day, several of these organisations initiated their own awareness campaigns, tailored to the capacities of each.

Robust networks leave no one behind

Organisation of Environment and Children Rights Preservation (OECRP) Executive Director Ranjith Wickramasinghe serves as one of the TB Champions actively collaborating and participating in the islandwide TB networks. Wickramasinghe emphasised the significance of this networking endeavour, stating: “Networking is incredibly important because many grassroots organisations do not even know much about this important information.” 

Elucidating on their efforts in Ratnapura, he said: “We brought together these smaller groups and connected them with chest clinics in their localities. We worked toward creating a relationship and identifying how best to support one another in the task of TB eradication.”

According to Wickramasinghe, networks of this nature allow for CSO groups to deepen their understanding on the subject matter to which they are dedicated. He noted: “Often, because there is still so much stigma associated with TB, the population is in hiding. However, if we reach this level of organisation, we will then be able to reach these hard-to-reach crevices.”

Fighting TB

Awareness is our biggest tool in fighting TB. Here are some key facts:

• What is TB?: An infectious disease that primarily affects the lungs but can also impact other parts of the body. It is caused by bacteria that spread through the air when an infected person coughs or sneezes.
• Recognising TB: Symptoms include coughing, intense drowsiness, loss of appetite, weight loss, fatigue, and blood in sputum. 
• Controlling the spread of TB: It is important to understand that TB is a disease caused by airborne germs that spread from person to person. Besides the lungs, it can also impact the brain, kidneys, or spine. Early awareness and recognition of symptoms can facilitate prompt diagnosis and treatment, thereby reducing the spread of the disease and its impact on individuals and communities.
• Treatment for TB: The main treatment for TB involves taking antibiotics for at least six months. Antibiotics commonly used include isoniazid, rifampicin, ethambutol, and pyrazinamide. It is crucial to complete the full course of antibiotics to prevent the bacteria from becoming resistant.
• Getting treatment: The National Programme for Tuberculosis Control and Chest Diseases and CSO movements like the Stop TB Project Sri Lanka can help with the diagnosis and treatment of the disease.