Tuberculosis (TB) killed an estimated 54,000 people in 2022 in South Africa and is the leading cause of infectious deaths in the country.

Civil society organisations celebrated the release of the National Strategic Plan for HIV, TB and STIs (2023-2028) and the updated TB Recovery Plan (version 3.0) as these plans recommended scaling-up existing TB policies to save lives.

Saving lives starts with testing everyone who is at risk for TB. A study conducted in South Africa showed that all close contacts of someone ill with TB, people with previous TB, and people living with HIV need to be tested for TB. Health worker training and community campaigns are needed about the new eligibility criteria for TB testing to make these services available at district level. If TB testing is expanded as promised in the TB Recovery Plan, there is hope to end this curable and preventable disease.

A human rights issue

It is appropriate that we celebrate World TB Day (24 March) in the same week as Human Rights Day (21 March) since TB is also a human rights issue. Our Constitution provides that “everyone has the right to have access to health care services”, while the International Covenant on Economic Social and Cultural Rights states that each person in the world has the right to “the highest attainable standard of physical and mental health”. These are powerful legal promises that require that everyone has accessible, high-quality healthcare for TB, free from stigma and discrimination.

The right to health also brings with it certain process requirements: including the requirement of participation in decision-making, transparency and non-discrimination.

However, despite the right to health and the TB policies in place in South Africa, testing numbers remain low, indicating that we are not testing enough people at risk.

Although anyone who breathes can get sick with TB, as it is caused by bacteria that spread in the air, TB remains a stigmatised disease, with some people associating it with poverty or HIV. Notedly, TB knowledge is even limited in people affected by TB, found community-, rights- and gender assessments in South Africa.

Policy translation

Policymakers, health workers and community leaders recommended that the national TB director and provincial TB managers be supported in the health system, so that TB policies receive adequate funding for implementation.

A practical example of effective TB policy translation is from KwaZulu-Natal. In that province, provincial-level managers did site visits to create awareness about scaling up TB testing among health workers, and simultaneously implemented widespread community campaigns, even in rural and remote areas. Community meetings were held to discuss challenges and recommendations to improve the quality of TB care and address broader social challenges.

Communities must be empowered to take action to ensure that they have access to services promised in the TB policies. Community healthcare workers play a crucial role as trusted leaders, and TB Proof (an NGO that several of us are members of) has been collaborating with different communities to ensure implementation of TB policies. We have learned that community members are an important cog in the battle against TB.

Read more in Daily Maverick: Community-based testing boosts diagnosis of infectious TB, study finds

In a rural area in Gauteng, we used a human-centred design approach to determine how to engage communities effectively. Once we changed our communication strategy from formal presentations to theatre plays, over a hundred people attended TB awareness days and participated wholeheartedly.

Our initial community engagement strategy had to change, informed by community members. “Local community members are best placed to lead effective health campaigns”, we were told by Windy Mogosi, a community healthcare worker from Hammanskraal on the outskirts of Pretoria.

TB Proof then came up with a plan for local community leaders to leverage their position to increase TB awareness at community level. We offered an eight-month mentorship programme to identify key intervention areas to increase TB awareness at community level.

For example, with a school programme, local community leaders explored child-led activities for everyone through unstructured play, to fulfil the basic needs of the child and support parent figures regardless of the challenges in the journey. The aim is to end stigma and empower families through ongoing awareness by taking action if they are at risk for TB.

Bringing people together

Addressing TB priorities relies on trust between all partners — community members, civil society organisations, and the National Department of Health. In this way, action plans for challenges and needs can be explored, with clear roles for each stakeholder.

If community engagement is a mere paper-based exercise, there will be no change at community level. Therefore, the government needs to regularly create spaces to hear from community members, so that TB strategies and resources match community-based TB priorities.

It can be done. A TB Imbizo piloted in Khayelitsha Eastern Substructure in the Western Cape was successful in bringing together TB role-players to strategise and develop feasible action plans.

“The Imbizo emphasised the importance of including community members in the TB policy development phase so that policies are implemented in partnership with communities who then demand these services at clinics,” we heard from Busisiwe Beko, a TB survivor and Patient Support Supervisor at Médecins Sans Frontières.

Ultimately, a human rights-based approach to TB mirrors a public health approach. TB survivors and their families need to be included in discussions where TB policies are developed by the Department of Health, as they have insight into what needs to be done in their community to improve TB care.

This World TB Day, we call for a community-led approach to TB that complies with human rights and public health principles, and that treats TB with the seriousness it deserves. DM

Schoeman, Giddy, and Pienaar are with TB Proof.  Coetzee is with TB Proof and the School of Public Health at the University of the Western Cape. Stevenson is with Section27.

*This article was published by Spotlight – health journalism in the public interest. Sign up to the Spotlight newsletter.

Note: Stevenson is an employee of Section27. Spotlight is published by Section27, but is editorially independent — an independence that the editors guard jealously. The views expressed in this opinion piece are not necessarily shared by Spotlight.