Karabo Rafube was born to a single mother in 1982 in Soweto, a sprawling township south of Johannesburg, South Africa. His mother abandoned him three months later, and Rafube was taken to live with his father.

In the final years of apartheid, Soweto was a harsh place to grow up. His father already had an existing family, and Rafube says he was never welcome in his new home.

“About fifteen people lived under the same roof,” Rafube recalled in an interview with Health Policy Watch. “There were two bedrooms, one kitchen, and one TV room. It was very crowded.”

His father and stepmother had both died of diabetes by the time he turned fourteen. After his stepmother passed away, Rafube was adopted by a prominent local businesswoman who ran a fish and chip spot, a neighbourhood liquor store and a butcher shop. 

“My life started to change,” Rafube said. “Even in school I was able to concentrate.”

But one winter’s day in July 2001, after returning home from playing football in Pretoria, Rafube was arrested. He was accused of providing information on how to access the businesswomen’s house to two people who had been caught breaking in earlier that day. Rafube denies knowing the two individuals involved.

At 19 years old, Rafube was taken to prison to await trial. His bail was set at 3000 Rand, worth around $500 today. With no family to turn to for help, Rafube awaited trial in prison for the next two years.

“I was all alone,” he recalled. “Awaiting trial, that’s when hell broke loose.”

Rafube was squeezed for space from the moment he entered the transport van that first carried him to Sun City Prison on the outskirts of Johannesburg. He was placed in a cell with 150 other inmates on arrival at the prison.

“Our cell was overcrowded, it was packed. There was one shower, one toilet, it was so small,” said Rafube. “We were not screened for anything.”

A few months into his incarceration, still awaiting trial, Rafube started to feel weak.

“I saw myself losing weight dramatically, and suddenly I had sores all over my body from head to toe,” said Rafube. “I didn’t know what was going on.”

Rafube sought help from the prison nurse, but he was turned away. His condition worsened over the coming months, and several of his cellmates started to develop symptoms. As their health deteriorated and numbers climbed, the prison hired a new nurse who would change the course of their lives.

“She made sure that I was screened for TB and HIV,” said Rafube. “She actually cared about me.”

When the test results arrived, Rafube was finally diagnosed: he had TB. After months of suffering, he was put on a six-month treatment course that set him on the road to recovery.

New Study First to Track Prison TB Globally

Prisons have been associated with tuberculosis for decades. But unlike other high-risk groups such as people with HIV, global and regional data on the incidence of TB in prisoners has never been systematically collected – until now.

In a sprawling global study of TB in prisons in 193 countries published in the Lancet last week, researchers from the Boston University School of Public Health (BUSPH) found prisoners are nearly ten times more likely to contract TB than people living on the outside.

Around 125,000 of the 11 million incarcerated people worldwide developed TB in 2019. Nearly half of all cases in prisons are undiagnosed.

“Prisons are closed settings where we should be detecting 100% of those with TB,” said Anthony Harries, senior advisor at the International Union Against Tuberculosis and Lung Disease. “If you go to prison, you should not also have to contend with a high risk of getting TB.”

Undiagnosed TB in prisons can have serious health consequences for both prisoners and the communities they return to, as prisoners who are unable to access medication or diagnosis may spread the disease to others when they are released.

Incarceration periods can be very short, and many people frequently cycle between prison and the general population. Incarcerated people can also be transferred between prisons, increasing the risk of infections spreading to new communities beyond their walls.

“Deceptively, this is not an immobile population,” Dr Leonardo Martinez, an epidemiologist at BUSPH and lead author of the study said in an interview. “If around 50% of cases are undiagnosed in prison, and then people are released, they are spreading TB to the general population.”

In Ciudad del Este and Asunción, Paraguay, a recent study found that around 30% of non-incarcerated individuals in both cities were culture-positive for the strain of TB circulating in each city’s prisons. Another study conducted in Brazil found that 50.6% of individuals with no incarceration history were part of infection clusters that included recently incarcerated people.

“It’s really important to show that mass incarceration has an impact on infectious diseases and health in general,” said Martinez.

Squeezed for space

As an airborne disease that spreads through close contact, TB is right at home in crowded, poorly ventilated prison cells. This is reflected in the numbers of the BUSPH study, which show that countries whose prisons are overcrowded also have the highest rates of TB incidence for incarcerated people.

The story of mass incarceration’s relationship to TB incidence in prisons is legible everywhere. The Philippines prison system is the most overcrowded in the world, jailing over five times its official capacity.

The country’s TB incidence in prisons – 3,829 cases per 100,000 people – is the highest in the world as a result, coming in at 30 times the rate observed in the general population and over three times the rate in prisons globally.

In Brazil, the prison population has skyrocketed in recent decades to over 800,000 people, up from just 230,000 in 2002. The country led the world in prison TB cases in 2019.

“The incarcerated population is increasing, crowding is increasing, and as a consequence TB rates are increasing as well,” said Martinez, who spent years working in Brazilian prisons. “There is a really strong relationship between the two.”

The South African prison system has one of the highest TB incidence rates in the world, clocking in at 20 times the risk faced by the global general population. This comes as no surprise to Rafube.

“Whether it was in the cells or the trucks on the way to trial, there was no space,” he said. “I was coughing on people when I was sick.”

Prisoners in Africa were twice as likely to contract tuberculosis than prisoners in other parts of the world in 2019. The Americas region had the largest total number of tuberculosis cases in prison that year, driven by the recent surge in mass incarceration in Central and South America.

“Our hope is that this data is the first step in saying: this is a huge problem, this is the amount of undiagnosed cases we have,” said Martinez. “Larger global health organizations should be collecting this data systematically, every year. I shouldn’t be doing this.”

Sentenced to tuberculosis

Life behind bars can be excruciating for the 50% of prisoners who never receive a TB diagnosis. To the people behind the numbers, the high rates of tuberculosis in prisons raise an ethical question: Do we have the same right to health as everyone else?

Rafube is certain the nurse who oversaw his diagnosis saved his life.

“When I started to take my treatment, my life started to change,” said Rafube. “I was picking up strength, I was gaining weight.

“If it wasn’t for this woman, I wouldn’t be speaking with you now,” he said. “If she had arrived a month later, I would be gone.”

Today, Rafube is a “TB teacher” in South African prisons. He makes regular visits to the correctional facilities he almost died in to convince those suffering from TB that life is still worth living.

“Irrespective of your criminal record, irrespective of what you have done, make sure your health is okay, and you can be okay,” Rafube tells inmates on his visits.

He emphasizes the importance of sticking to the six-month medical schedule, as many prisoners choose to crush their medications into powder to sell or smoke.

The COVID-19 pandemic hit TB prevention efforts like a wrecking ball, leaving people suffering from TB more vulnerable than at any time in the last decade.

Deaths from TB jumped by over 100,000 worldwide in 2021 – the first increase in fatal TB cases since 2005 – and the World Health Organization estimated that disruptions to TB treatment may have caused an additional half a million deaths that year.

The BUSPH study data is limited to the pre-pandemic era. The impact of the pandemic on people suffering from TB behind bars is not yet known.

“We can’t end TB without treating everyone,” said Rafube. “That includes prisoners.”

Image Credits: Ye Jinghan, CC, CC, CC.