Adolescents are the missing middle falling through the cracks of TB care

When 14-year-old Mia* started coughing, she thought it was just flu. But then she became so tired she could not get out of bed, and her mother got worried. She took her to the clinic but did not expect the diagnosis that followed – drug-resistant tuberculosis (TB). Mia had TB throughout her body, and a CT scan showed tumour-like TB masses in her brain.

A long and dangerous journey followed. Mia was admitted at a TB hospital but became much sicker. She started having seizures and soon required a tube down her throat to help her breathe. Typically, children older than 12 are treated in adult wards, but Mia was tiny and weighed less than 30kg. It was hard to know who should look after her. She was eventually transferred to a Paediatric ICU.

After her stay in the ICU, Mia returned to the TB hospital and began the long recovery process. Mia felt lonely and scared. She was separated from her family and everything that was familiar to her. She longed for the occasional weekends where her mother had enough money to visit. Mia remembers how her mom brought treats and always tried her best to take care of her.

One day Mia was so happy to see that her cousins had come to visit her. But she noticed that they all had sad faces. Then they shared the news that Mia’s mother had passed away from TB. Mia was devastated. Her brother had also recently died, after suffocating during an epileptic seizure. Her sister was ill with TB, but was living on the streets. Mia was all alone. She cried for weeks. She missed her mom so much. Mia says it was only her faith in God that got her through.

Family

Over time Mia made friends in the TB ward. The nurses and doctors became like family. She understood it was important to take her tablets every day, even though they made her nauseous. She attended school at the hospital and decorated the walls around her bed with drawings of her mother.

After many months, Mia was discharged to live with her mother’s cousin. Mia has not told her new friends she has TB – she thinks they will avoid her. But she is healthy and happy. She is back in school, and loves music, TikTok videos and dancing in church.

Unfortunately, Mia’s TB journey is not unique. TB remains the world’s deadliest infectious disease, killing more than a million people every year.

TB in teens: Myth vs fact

❌ Myth 1: “TB is a disease of the past.”

✔ Fact: Tuberculosis is still one of the world’s leading infectious killers. In countries like SA, adolescents are diagnosed every year.

❌ Myth 2: “Teenagers don’t get TB.”

✔ Fact: Adolescents are at real risk, especially if someone in their household has TB. The teenage years are a period of biological and social change, and TB can strike at this vulnerable life stage.

❌ Myth 3: “If you have TB, you must have done something wrong.”

✔ Fact: TB is an airborne infection. Anyone can inhale the TB germs. It is not caused by bad behaviour, and it is not a “dirty” disease. Stigma often does more harm than the disease itself.

❌ Myth 4: “TB treatment is quick and simple.”

✔ Fact: Treatment usually lasts at least six months and requires taking multiple antibiotics. For teenagers balancing school, friendships and exams, sticking to treatment can be challenging – but support makes a huge difference.

❌ Myth 5: “A TB diagnosis ruins your future.”

✔ Fact: TB is curable. With early diagnosis and proper treatment, most teenagers recover fully and return to normal life. New, shorter preventive treatments are also making it easier to protect young people before they get sick.

TB affects people of all ages, including teenagers. Roughly 750,000 teenagers develop TB each year.

On World TB Day (24 March), it is again important to point out that SA is among the countries most affected by TB. About 8% of TB cases occur in teenagers, which means that roughly 20,000 teenagers develop TB each year.

Teenagers are often overlooked in the fight against TB. TB statistics divide patients into children and adults, so teenagers are split between the two categories. This means that the specific challenges faced by teenagers with TB are often overlooked.

Researchers say that adolescence is a very vulnerable time for TB infection and disease. Teenagers spend more time outside the home – at school, visiting friends and on public transport. This increases their chances of being infected. Also, changes in their immune system during puberty influence how their body responds to TB germs.

In high-burden communities, many teenagers are exposed to TB early in life. One study in South African high schools showed that about half of teenagers tested already had evidence of TB infection.

TB treatment lasts many months. Pills for TB must be taken daily, and the side-effects can be difficult. For teenagers juggling school, social life and family responsibilities, sticking to this routine can be difficult. One of the medicines used to treat drug-resistant TB darkens the skin. Belinda*, who takes this medication, told researchers: “I’m no longer beautiful.”

Stigma

One of the biggest struggles for teenagers is stigma. They worry about what their peers think and may refuse to take medication. Research shows that teens are more likely to interrupt treatment than younger children. This is concerning because incomplete treatment can lead to relapse or drug-resistant TB.

Some teens are afraid they will be excluded from their peer groups because they have what is seen as a “dirty” disease. They isolate themselves rather than face being ostracised. This social isolation can lead to anxiety, depression and other mental illnesses.

Missing school has long-term consequences for teenagers. Akhona* was a phenomenal 17-year-old rugby player. When he got TB in Grade 11, he had to stop playing rugby. This meant he could not apply for the sports scholarship that was his ticket to further education. Walden* was in Matric when he contracted TB. He missed his Matric exams and never managed to get back to school.

Teenagers are at a stage in life where they start forming romantic relationships. Research shows that teens are very reluctant to disclose their TB to their romantic partners. Some teenagers feel they need to end their romantic relationships. Others just hide the fact that they have TB.

Health services are often designed either for small children or for adults. Experts refer to teenagers as “the missing middle” in TB care. Teens often attend clinics alone but feel uncomfortable in adult waiting areas. Many teens struggle to discuss issues like stigma, treatment adherence, mental health and sexual relationships with adult healthcare workers.

Peer support

Encouragingly, scientists and public health experts are paying increasing attention to adolescent TB. Researchers are studying how treatment can be made easier and how vaccines could protect this vulnerable group.

However, a lot still needs to change. Adolescent-friendly TB services, school-based TB education and peer support groups for teenagers are desperately needed.

On a recent visit back to her TB ward, Mia hugged all her nurses and doctors and told the children how important it was to take TB treatment every day. She is counting the days until the end of March, when her own TB treatment journey will finally be over.

But Mia wishes she could take back the past. She wishes someone had warned her that TB could happen to someone her age. She wishes that when her sister first got ill with TB, she and her mom had known how to protect themselves.

This World TB Day, if we want to end TB we cannot afford to overlook teenagers who are caught between childhood and adulthood, and too often fall through the cracks in our healthcare systems. DM

* not their real names

Dr Susan Purchase is a research clinician at the Desmond Tutu TB Centre at Stellenbosch University.