First comes a hacking cough, with mucus and blood. As the bacteria starts to infect the lungs, eating away at the tissue, the night sweats start and a high fever develops. Over time, extreme tiredness sets in, along with loss of appetite and weight.
If left untreated, pulmonary TB will severely weaken an infected person, leaving them emaciated. Eventually their lungs will fill with liquid, causing chronic respiratory failure. At this stage, treatment is too late. The patient will die.
In refugee camps across South Sudan, these symptoms are recognised by many people. They know they must see a doctor as soon as they start to feel sick.
Inside the TB isolation ward at MSF´s hospital in the Malakal Protection of Civilians (PoC) camp in Upper Nile State, northeast South Sudan, a young man sits on the side of his bed, his elderly mother fussing over his appearance. He is gaunt and wearing a dirty, ill-fitting business suit. His mother, like all visitors to the ward, is wearing a mask over her mouth to help prevent the spread of disease.
In Malakal MSF is providing TB treatment for inpatients and outpaitents living in the camp and the neighbouring town. Across South Sudan official figures show that in 2017, 11,364 new cases were diagnosed and 3,510 lives were lost from a potential infected population of 20,440. This is roughly thirteen times higher than the EU average. However, with the population constantly on the move due to ongoing violence, finding accurate figures for TB is nearly impossible. In unstable areas it is difficult to monitor people´s health due to the lack of medical facilities, so the number of people infected with TB in South Sudan could be much higher.
Despite his mother’s insistence that he is doing better, the young man looks frail and barely speaks. He is so thin that a piece of string is tied around the waist of his crumpled and stained suit, in lieu of a belt. A bowl used to collect saliva lies on the floor nearby. While the man’s TB is advanced, there is still a chance he will regain strength. But only with the right medication and treatment.
TB: A disease of the vulnerable
The tragedy in Africa´s youngest nation is that TB is largely treatable, even in its advanced stages. There are many forms of TB but in South Sudan TB of the lungs (or pulmonary TB) which affects the lungs is the most common type diagnosed, accounting for 80 percent of cases.
“TB is mostly a disease of the vulnerable. Many people live with latent TB, but they have a strong immune system and can live for a long time without it being detected or falling sick,” explains Dr Harry Aichner, MSF’s medical focal point for TB in Malakal.
“But in a refugee camp, where people are crammed into tightly packed shacks, living on top of each other, the airborne disease passes easily from one person to another.”
In many ways the patients in Malakal are the lucky ones because they have access to healthcare services. But life in the camp is still not easy. Many people have lost their homes and witnessed friends and family die in the conflict.
Men who are deemed to be of fighting age are afraid to leave the UN-protected camp for fear of being conscripted into one of the militas, or killed.
The camp has always beendensely populated. There is currently only only 17 metres squared of space for each-person in the settlement. Two years ago the situation was even worse as the population in the camp was double what it is now. These are perfect conditions for the spread of pulmonary TB.
Drug resistance and toxic treatment
The ongoing civil war in South Sudan has forced many people to flee their homes, moving from available healthcare facilities. And, as funding for the health system evaporates, the hospitals and clinics that existed before the fighting are struggling to stay open.
It is estimated that one in three people in South Sudan is either internally displaced (IDP) or living as a refugee outside of the country. In such circumstances, access to TB diagnosis and treatment can be incredibly difficult.
Most of the patients in Malakal have moved several times during the conflict. Each time the frontline approaches, families grab what they can carry and flee into the bush. For TB patients, this can mean losing access to vital drugs and medical support needed to treat TB
Without treatment, TB bacteria can adapt, grow stronger and develop immunity to the most common drugs. When this happens MSF medical teams need to find alternative drugs, which can sometimes be toxic and need to be monitored very closely. With this added complications patients may take longer to recover.
People infected with HIV are also particularly susceptible to TB. HIV leaves a person’s body weakened, opening it up to infection. In some parts of the world, TB is the biggest killer of HIV positive people.
Substance abuse: The stress of life in a warzone also drives many people to alcohol and substance abuse. For some in Malakal PoC, it is the only release from the day-to-day pressures of living so close to conflict.
“We often see cases of TB among heavy drinkers. It’s a symptom of stress from living in a refugee camp. Alcohol abuse can compound the effects of TB, as it weakens the immune system which is also in decline from malnutrition,” says Dr Aichner. “Excecssive drinking can also effect TB medication and may result in liver damage.”
Many of the patients in the ward admit to drinking heavily, spending up to six US dollars a week on alcohol. This is a colossal sum in a place where there are few jobs and nearly everybody survives on assistance from humanitarian organisations.
“In the camp, young men are both the most likely to drink excessively and be affected by TB. With money scarce, many heavy drinkers will sell their food rations to buy marisa, the local alcohol.”
Fleeing north to Sudan
The burden of TB among refugees fleeing violence has spread north, across the border to refugee camps in Sudan´s White Nile State, where 53,000 people sought refuge in 2017 alone.
For some, it took three weeks to make the journey across the border to the mega-camp Khor al Wharal. By the time they arrived, they were weak and malnourished.
MSF provides care on both sides of the border along the main migration route. Teams work hard to meet the medical needs of the population, wherever they settle. Responding to the influx of refugees and the ever-changing needs, MSF is still developing its TB programme on the Sudanese side of the border in the refugee camps of Khor al Wharal and Al-Kashafa refugee camps.
At over double their intended capacity, conditions in the camps are difficult. In Al-Kashafa there are cases of entire families receiving care for TB due to the cramped living conditions. The authorities are planning to divide this massive camp so that services can be more easily provided and TB infection rates can be reduced. Most refugees live on a diet based almost exclusively on one staple crop called sorghum. Poor nutrition can lead a patient, who has already recovered from TB, to relapse, as their immune system remains weak. This vicious cycle can repeat itself over and over again. To break the cycle, better nutrition is needed.
“Treatment can be difficult, especially for refugees without access to good food,” explains to Yumo Arop Ajing the clinical officer in charge of KW . “When somebody starts taking their medication, their metabolism increases and their appetite suddenly develops. If they don’t have access to food, the hunger pains can be difficult to deal with. In some instances patients stop taking their medication completely.”
MSF has developed a specialised TB treatment and training programme for the Ministry of Health. The successes were immediate: of the 190 patients on TB treatment in Khor al Wharal refugee camp in Sudan, 66 percent made a full recovery.
While the infection rate of TB is definitely higher in the refugee population, the local host community is also benefiting from the advanced treatment MSF is offering.
Hameia Hamed Kameh, an elderly Sudanese woman, has seen her life turn around after she was left bedbound from TB affecting the spinal column, “With help from my friends and family, I went to the MSF hospital. Other doctors charge a lot of money for care and I was misdiagnosed. MSF’s treatment is free.”
Leaving a deadly toll on the vulnerable
The war in South Sudan has taken a huge toll on its people, turning a treatable disease like TB into a deadly public health disaster. If an effective health system was allowed to develop, with access to care for all patients, the number of people contracting the illness and dying from it would rapidly decrease.
The international community needs to do more to support health systems across South Sudan, especially in places like Upper Nile State. Investment in healthcare, including medical personnel, healthcare facilities and supplies, can bring real change to people´s everyday lives, even during the bleakest of times.