Thandeka* is walking with her backpack through the streets of Khayelitsha. She is an uNompilo - a community health worker. She is describing a typical experience of one of the people she is helping with Tuberculosis (TB).
“They don’t perceive them the same as people with other illnesses like diabetes. If a person who has TB uses a bowl or spoon, they make it look like they will get infected if they use the same utensils.”
This is not an isolated instance. We heard about women who are told to avoid contact with children for the six months they are on treatment, families being shunned for having someone with TB in their midst, people being dismissed from their jobs, excluded from family gatherings, and feeling like they are valued less as a person.
Working in the community
Community health workers like Thandeka play an important role in providing TB care at home. Many would call this the very essence of person-centred care - providing TB information to communities in their preferred language, supporting people with TB at every step of their TB journey, and providing accurate information about infection control.
On our walk, we bumped into one of the TB patients Thandeka supported several years ago. She delivered this person’s medication to their home when they were too weak to go to the clinic. It was like a reunion of friends.
‘A certain kind of person’
Thandeka explains that the core of TB stigma is the belief that “a certain kind of person gets TB”. TB is often associated with HIV, “being a person who cannot choose what they eat” and being poor. And this contributes to the suffering and isolation that TB patients experience.
Phumeza Tisile, an advocacy officer at TB Proof, describes conversations with TB patients about stigma as hauntingly grim. “Some participants were very emotional. It brought back memories of the TB stigma they had to face. It made it clear to me that counselling for people with TB is needed at diagnosis and treatment. Community health workers do valuable work, but more of this is needed to support patients during TB treatment.”
Stigma impacts TB prevention and care
Stigma impacts every step of TB care. People are afraid to visit a health facility and undergo TB testing. They are scared to start TB treatment and that friends and family members might find out. They struggle to continue the long treatment journey because it interferes with their work and family life. And they may be hesitant to disclose they have TB to people who may be at risk of infection themselves.
These delays give the TB bacteria time to cause bigger destruction - more advanced disease bringing a higher risk of death, long-term disability, and ongoing community spread.
Internal stigma can lead to feelings of shame that impact mental wellbeing, which is too rarely addressed as part of TB care delivery.
CHWs are well placed to address TB stigma
Community health workers play an essential role in identifying people for TB testing and supporting people who undergo TB treatment. In this capacity, they are acutely aware of the need to do more to prevent stigma in the community. CHWs have highlighted that stigma should be combatted through community awareness campaigns.
One group collaborated with TV soap star Thapelo April for Mandela Day (on 18 July 2019) to perform a play about TB stigma that had community members from Hammanskraal, Gauteng cheering for more.
CHWs also recommend speaking to families about infection control measures. For example, to explain that TB spreads through the air, and not through touching objects. People with TB who are on effective treatment for two weeks and whose symptoms are improving are not infectious to other people anymore. Misconceptions related to these infection control measures result in unnecessary and stigmatising behaviours.
Community health workers are also aware that their presence in someone’s home may sometimes inadvertently disclose to other people that the person they are visiting is ill.
Thandeka explained how she improvises when tracing and recalling TB patients to avoid community members identifying why she visits the patients.
“Sometimes I pose as friends or people who have borrowed them money when we find them at the shebeens. I pretend to demand my money and tell them I am coming back at a particular time at his house so that no one can know why we are there.”
This way they will have a private meeting, and time to talk about ways in which to make TB follow-up visits easier.
From global priority to local action
Ending TB stigma is a global priority, with the political declaration signed by global leaders at the United Nations High-Level Meeting on TB in 2018 committing “to promote and support an end to stigma and all forms of discrimination”. Addressing TB stigma, human rights- and gender-related barriers to accessing TB care are also national priorities for South Africa. But progress towards these goals has remained elusive.
Looking to community health workers to play this role risks shifting yet another important task to them, without additional remuneration and support. Their work has been chronically underfunded, with fractured employment structures, little career progression, and patchy training. Yet despite this adversity, in many instances, they have continued to fill gaps in the health system by bringing care closer to home.
There are positive signs that community health workers may receive the support they deserve. Dr Lindiwe Mvusi, Director in the TB Control and Management Cluster, National Department of Health, South Africa, recently said online: “CHWs should be adequately trained and mentored to ensure quality of care they provide to communities."
There are further opportunities to articulate explicitly the role of CHWs in the national TB Recovery Plan. They will be key to integrated TB and Covid-19 testing, contact tracing, and home-based care. But we cannot depend on local action only.
Our politicians and public health leaders should mention TB and Covid-19 in the same breath in television appearances to make sure TB is spoken about and becomes a key priority.
Ending TB stigma
TB stigma thrives when TB is spoken about in hushed whispers, or behind closed doors. The truth is anyone that breathes can get TB, as it is an airborne disease like Covid-19. We can all reduce the harmful effect of TB stigma in our communities by taking part in activities that break down false and unfair attitudes towards people with TB. Community health workers like Thandeka are leading the way.
The authors are members of TB Proof, a TB advocacy organisation in South Africa.
*Thandeka is a pseudonym with descriptions of two CHW amalgamated in this narrative.
*This article was first published in Spotlight.