Desmond Tutu was 15 and living in Sophiatown, to the west of Johannesburg when he was diagnosed with tuberculosis. He spent most of his time in the Rietfontein Chest Hospital. With his schooling put on hold, far away from family and with the fear of death looming over him, the outlook was grim.

“I began coughing up blood. I had seen in the ward that almost everyone who coughed blood ended up being carried out on the stretcher to the mortuary. I realised that I was in fact close to death,” he recalled.

The doctors had told Anglican priest, Trevor Huddleston, who had taken the young teen under his wing: “Your young friend is going to die.”

“I remember on one occasion I was coughing blood and I said to God: ‘If I am going to die, it’s alright, and if I am not going to die, it’s alright’.” He said after acknowledging that, he felt remarkable peace.

Tutu reflected later that his time in hospital convinced him that he wanted to become a doctor. “I thought: ‘I must become a physician because I want to engage in research to find a cure for TB.’ He wanted to study medicine at the University of the Witwatersrand. He was admitted to the medical school but the study costs were out of reach for his family. He obtained a government scholarship to study teaching, before his life moved in a different direction.

But his memories as a TB patient lingered. He never forgot the kindness of the nurses, or his mother’s travels from far to visit him. And later in life, it galvanised him. Tutu became a fervent supporter of TB patients and an advocate to get people the diagnosis and treatment they deserved. He also spoke out against what he called the cruel and unnecessary stigma attached to TB.

Tutu lent his name to the Desmond Tutu TB Centre at Stellenbosch University, working closely with founding director, Nulda Beyers, and becoming the centre’s patron. He poured himself into the cause, constantly finding time to visit TB patients and use his powerful voice for change, whether it was at home, in communities and in hospital wards.

Together with his wife, Leah, he was also patron of the Tygerberg Hospital Children’s Trust in Cape Town. The trust supports mother and child patients at Tygerberg Hospital, which is a world leader in the diagnosis and treatment of childhood TB and HIV.

Tutu’s visits to hospital wards were a treat. As he did his rounds, his laughter rippled through the hospital corridors, as children and staff eagerly awaited him.

On one particular visit to hand out early Christmas presents close to his 80th birthday in 2011, he met 10-year-old Lorenzo Jansen. The child had battled with TB meningitis and had gone blind after developing a brain tumour when he was five years old. The Arch lent down to speak to him. The young boy put out his hand and asked Tutu if he could touch his face. Moving his fingers, he briefly paused when he reached his nose. “Big nose”, Jansen exclaimed in Afrikaans, and the two of them broke into peals of laughter.

At the end of the visit, Tutu reflected: “We have come here to spread a bit of joy, but we’ve got so much in return.”

Over the years, Tutu rustled up support in the communities around Cape Town. He launched the “Kick TB” campaign in Gugulethu, kicking a soccer ball much to the delight of hundreds of schoolchildren. Standing on the podium, he also encouraged children to be aware of TB symptoms, such as a cough, chest pains and night sweats.

In 2012, he pulled on a helmet and full cycling gear to support doctors and researchers who were riding in the Cape Argus Cycle Tour to raise awareness of childhood TB. After reminiscing about riding to the shop to buy the newspaper when he was a boy, he turned serious when he talked about the one million children around the world who get TB every year, mostly in developing countries.

“Our children shouldn’t be exposed to conditions that make them liable to get TB. Poverty clobbers us many times over. We need to discover a cure for this horrible ailment.”

The frightening pace of TB deaths concerned him deeply.

His frustration with poverty and overcrowding which provides ideal conditions for TB bacteria to spread, together with the slow pace of global investment and drug development for TB, was clear when he spoke after the screening of the film Breathe Umphefumlo.   An adaptation of Giacomo Puccini’s opera La Bohème, the film’s main character, Mimi, dies from tuberculosis – an illness which has risen, rather than abated, in South Africa – since the 19th century when La Bohème was first performed in Turin, Italy.

He called the situation disgraceful. “There are people dying who need not die. It is unacceptable. It is immoral. We need a new set of tools to diagnose and treat the disease.”  Tutu said the fight against TB needed to be “our next liberation struggle, next to the fight against poverty”.

Tutu’s interest in TB made him want to learn more. He wanted to dig deeper and explore the profession he had once hoped to pursue.

In 2013, he asked if he could experience what it would be like to study medicine. For a few months, Tutu quietly became just another member of the class in Stellenbosch University’s Faculty of Medicine and Health Sciences. He attended lectures and practicals with students, learning how to recognise symptoms of childhood diseases.

The lecturer was very impressed with her new student, saying he was very good at listening to the chest and picking up abnormal signs on the simulation doll. He had a natural ability. Fellow students said he lit up the class when he asked questions. At the end of his course, Tutu was made an “Honorary Medical Doctor” and presented with a stethoscope with his name engraved on it.

While facing his own health challenges, Tutu used his experience to propel TB into the spotlight. Those on the frontlines of TB research and practice will feel his loss deeply.

In 2020, 61,000 people died of TB in South Africa, an increase of about 5% compared to 2019, according to the World Health Organisation. Tutu would be alarmed. Our gift to him for his abiding commitment over the years would be to pick up his baton and fight harder to end the scourge of TB. DM

Kim Cloete is a journalist and media specialist, with a strong interest in public health.