TB Proof co-hosted a World TB Day event at Nkazimlo Primary School for Grade 7 learners. Learners enjoyed games, a soccer tournament, and music while engaging with TB knowledge sessions and survivor stories, helping to normalise conversations around TB and reduce stigma.

TB survivor and advocacy officer Phumeza Tisile knows how isolating tuberculosis (TB) can be for young people.

“Young people don’t want to tell their friends they have TB. They are afraid they won’t be accepted,” says Tisile, who now works with TB Proof to support others living with the disease.

Her [Tisile] experience reflects a wider reality in the Western Cape. New community-engaged research conducted in the Western Cape has found high levels of stigma among people living with TB, highlighting the urgent need for targeted interventions that reduce stigma in both communities and health systems and make TB services more accessible.

The findings come from a study conducted with TB-affected communities and health workers in Khayelitsha, one of the Western Cape’s highest TB burden areas, where the City of Cape Town records TB incidence rates of 462 per 100,000 people.

Researchers surveyed 93 people with TB and 24 caregivers across two provinces and found that stigma is nearly universal among people affected by TB. Surveys included questions about three types of stigma. Anticipated stigma is a fear of how others will react, enacted stigma is experiences of discrimination or negative treatment from others, and internal stigma is negative feelings of self-blame or shame, all of which can arise due to the person’s TB diagnosis.

“When we looked at the whole group of 93 people with TB, almost everyone, 96%, agreed or strongly agreed to at least one question about each type of stigma,” said Dr Ruvandhi Nathavitharana, an Infectious Diseases physician and TB researcher who chairs the board of TB advocacy organisation TB Proof. “When we looked at the numbers who agreed or strongly agreed to at least 5 questions about experiences of each type of stigma: 72% reported anticipated stigma, 56% reported enacted stigma, and 43% reported internal stigma. That tells us TB stigma is widespread and has far-reaching consequences.”

Stigma delays diagnosis and treatment

The research also shows that TB stigma directly affects whether people seek care and stay engaged in care. Between 30% and 50% of study participants said stigma delayed them from presenting with symptoms, visiting clinics for testing, starting and completing treatment.

“Stigma is a barrier across the entire TB care cascade,” Dr Nathavitharana said. “Stigma leads to delayed diagnosis and loss to follow up, which results in people with TB becoming sicker and ongoing transmission within communities.”

Researchers also found gender differences in how stigma is experienced. Women were more likely to fear or experience gossip or social judgment, while men were more likely to internalise stigma by associating blame for getting TB with risk factors such as smoking or alcohol or substance use.

Young people face unique barriers

While stigma affects all age groups, young people face specific challenges, particularly around school, social relationships and clinic access.

“Working with schools and young people, we see that there is still a lack of awareness about TB, and many learners don’t want to associate with it,” said Tisile.

“We see anticipated stigma all the time, which occurs when someone fears or assumes people will shame them or treat them differently because they have TB,” she explained. “That fear often becomes an internalised stigma, where young people blame themselves for getting TB.”

Her own experience reflects the isolation many young patients feel:

“As a young person, I remember being at the clinic and not seeing any young people around. It was mostly adults. There was no one you could talk to or relate to.”