TB is the leading cause of death in South Africa. Globally, politicians and policymakers have not prioritised this disease. This neglect has allowed TB deaths to balloon to 1.7 million per year, making it the world’s leading infectious killer.

People living in poverty, children, pregnant women, healthcare workers, and people living with HIV or chronic medical conditions like diabetes and rheumatoid arthritis, are among the high-risk groups for TB.  However, anyone can get TB as it is caused by a bacteria that spreads through the air when an infected anduntreated person coughs, speaks or sneezes. Symptoms include: a persistent cough, night sweats, fever and unintended weight loss. TB not only affects the lungs, but can also occur in other organs such as one’s brain (TB meningitis).

With steady rise in the number of cases over the past 30 years and increasing evidence of its devastating impact on individuals, communities and national economies, the United Nations has called a high-level meeting on the disease alongside the United Nations General Assembly, scheduled for September 2018.  This first ever high-level meeting on TB is intended to spur global political commitment to research into more effective diagnostic tools and better drugs. National budgets should reflect leaders’ promises to end TB by 2030 as resources are needed fordevelopment of safer TB treatment, TB Programs, TB awareness campaigns and TB screening by community health workers.

Importance of health workers

Screening for the disease and providing access to person-centered health services, with psycho-social support for infected people are particularly important to finding and controlling TB. The World Health Organization estimates that there are more than four million people around the world with TB, who are not being reached by health systems.  Community health workers are a key link in this effort since they have relationships with people and can talk to them about how TB is spread, what the symptoms are, and how to get access to testing and treatment.  Most importantly, they can refer family members (including children) and friends to also get tested for TB. Therefore, the importance of quality TB training for community health workers cannot be over emphasised. They are TB champions in South Africa!

The fight against TB is personal for me. I am a healthcare worker, who contracted TB  working as a dietitian in a public hospital. While I was fortunate enough to be properly diagnosed and to receive good medical care, I still suffered dire consequences including life-threatening liver failure which resulted in a coma. These adverse side effects were the consequences of the toxic drugs used to treat my condition- pre-extensively resistant TB (pre-XDR TB).

Patients with drug-resistant TB are at high risk for disabilities like hearing loss caused by the injectable drugs used to treat the disease. It is estimated that up to 50% of people can suffer hearing loss from the injectable TB drugs currently used to treat drug-resistant TB.

Access to new drugs

TB Proof launched the “My patient’s choice” pledge, asking care providers to commit to communicating TB treatment plans with their patients, including possible side effects and information about newer drugs such as bedaquiline. Each person has a human right to health and care providers have a responsibility to provide person-centered care to their patients. Increasing access to, and prioritising the development of new drugs and new diagnostic tools are central to combat the disease without the debilitating effects of existing drugs. This requires significant investment in research by both government and the private sector.

TB champions across the globe are working to get political leaders to prioritise TB at country level.  As a part of TB Proof, I attended the Moscow Ministerial meeting, November 27 2017, where I used my role as a speaker in one of the plenary sessions to advocate for access to safer and more effective medication in all communities, with fewer side effects and shorter treatment duration.  Duration of current treatment runs between six and twenty-four months. Nausea, vomiting and diarrhea associated with TB treatment makes it hard to continue taking treatment, but to be cured one must persevere and finish treatment.  By taking treatment, patients are protecting their families and communities as they will not be infectious.

I am grateful to see the UN taking steps to get the world’s attention on the disease and to see our health minister Motsoaledi committed to playing such an active role on behalf of our government. I hope to see President Ramaphosa taking up the cause as well, and along with other world leaders, attending the United Nations high-level meeting and committing to eradicating TB in South Africa by 2030 in keeping with the Sustainable Development Goals, which heads of state signed on to in 2015.

Ingrid Schoeman is a TB activist and the Operational Manager at TB Proof. 

• Support the My Patient’s Choice pledge asking for the best treatment available to be offered and explained to patients by care providers.