Fighting for change
Photostory of TB survivors
Ingrid Schoeman, above, contracted drug-resistant tuberculosis (TB) in 2012 while working as a dietitian in hospitals in the Eastern Cape, South Africa.
She underwent two years of treatment, and almost died from liver failure caused by the TB medication. She was in a coma for several days, spent one month in intensive care and was hospitalised for 75 days.
“I was fortunate to have access to excellent medical care when I was sick,” she says, “but I realised that most people with TB do not. Our laws and policies [in South Africa] enshrine the right to health for all, yet equal access to quality TB services is not the reality.”
Ingrid is part of MSF’s ‘TB leaders’ project, which aims to empower a new generation of TB activists to work for better treatment, medications, prevention and care.
Although tuberculosis is the leading cause of infectious death in South Africa, only 0.2 percent of the total current national budget for HIV/AIDS, TB and maternal and child health has been allocated to TB treatment.
Ingrid and her story form part of a photo series commissioned by MSF to promote the contribution that local TB advocates have made in the fight against TB.
The 'TB leaders' project is empowering a new generation of TB activists to work for better treatment, prevention and care, read more about their stories below.
Prince Nhlanganiso Zulu, the eldest son of Zulu King Goodwill Zwelithini and Queen Buthle MaMathe of the Dlamahlahla, from KwaZulu-Natal in South Africa.
He was diagnosed with TB in 2010, after which he spent 3 months in a Durban hospital before having one of his lungs removed. “I want people to realize that I no longer have all my body parts, thanks to TB - I believe many people can relate to the pain of this.”
As a TB survivor, the Prince devotes much of his time to social and health advocacy. He is passionate about raising TB awareness, and in his capacity as National TB Ambassador he has been visiting many male-only, predominantly Zulu hostels in KwaZulu-Natal and Gauteng.
“Many of us Zulu men are trapped in this habit of avoiding health facilities when we do not feel well – it’s an old mindset and for this to change men are going to have to step forward to set a new example. My ambition is to start this movement.”
Nonjabulo Madida, 28-year-old, from Empangeni in KwaZulu-Natal Province was diagnosed with multi-drug resistant TB (MDR-TB) in 2015 and spent two years on treatment.
She continues to speak out about the harshness of the treatment, stressing that although the treatment term has come down to 9-12 months it is still far too long, and while the daily injection she had to endure was replaced in the MDR-TB treatment regimens replaced by oral medication the “pill burden” of MDR-TB treatment.
“The number of pills you take depends on factors like body weight, and my bodyweight at the time was 70kg, which meant 22 pills in the morning and 6 pills in the evening,” she says.“In the first month, the pills caused constant vomiting. I would vomit while taking the pills, wait five minutes, and then try again,” she says.
“A lot of people believed that replacing the injection with pills would help more people to make it to the end of their treatment, but adherence to treatment remains a huge problem and a big part of the problem is the pill burden.”
Madida advocates for increased investment in TB Research and Development, believing that if a fixed-dose combination pill were to be developed for drug-resistant TB it would radically the pill burden and make treatment adherence much easier.
Zandile Ngema, Cebile Mhlonga, Ozias Biyela, below, are traditional healers in King Cetshwayo District in KwaZulu-Natal, attending a “TB Leaders” training run by Doctors Without Borders in Eshowe. They say they were inspired to learn more about TB by Prince Nhlanganiso Zulu, the son of the king of the Zulu nation and an outspoken TB advocate.
TB has taken its toll in the lives of all three healers. Ngema’s sister has been diganosed with TB twice. Two of Mhlongo’s family members have had TB, and one died of the disease, while TB has killed three members of Biyela’s family.
Dr. Dalene von Delft was diagnosed with multi-drug resistant tuberculosis (MDR-TB) in 2010 while working as a medical officer in a hospital in greater Cape Town. Lying in an isolation ward on Christmas with a hole in one of her lungs, nauseous from all the pills that MDR-TB patients must take and well aware that her treatment could cause the loss of her hearing, Dalene experienced feelings of hopelessness.
As bleak as her situation was she knew she was better off than the vast majority of South Africans infected with drug-resistant strains of TB. She had medical aid, for one thing, and medical colleagues who could give expert medical advice, not to mention a supportive doctor-husband. With her knowledge and connections she was able to apply for compassionate use of bedaquiline, an effective and less toxic new trial drug which is only now becoming widely available through the public health system in South Africa.
“After 19 months of treatment I was cured and free to carry on with my life, but having experienced the inadequacies and harshness of the treatment first-hand I took a decision to push for education, awareness, and destigmatisation of TB,” she says.
With her husband Arne and five other colleagues she founded an organization called TB Proof, which is today the heartbeat of TB advocacy in South Africa, supporting the activism of Phumeza Tisile, Goodman Mkhanda, Ingrid Schoeman, Zolelwa Sifumba, Busisiwe Beko, Thabo Pelesane, Chulumanco Scwebu and many others.“Running an NGO is not easy,” Dalene admits.
“It is difficult to secure funding and for much of its history TB Proof has relied on the support of volunteers, which has meant that the energy has ebbed and flowed as people come and go.”
The recent appointment of five permanent employees has brought more stability to the organization, Dalene says, and with so much left to do to overcome TB in the country this is good news.
Goodman Mkhanda was diagnosed with extremely drug-resistant TB (XDR-TB) in December 2017, in Cape Town, South Africa. It took four years from his diagnosis to his cure, in contrast to the span of traditional treatment, which can last anything from 9 -24 months.
“My doctor sat me down and said I think it’s time for you to talk to your pastor, because the treatment isn’t working. I said are you saying I’m going to die and she said yes I think so.”
Upon asking if the TB could be cut out and a chest scan, surgeons found a cavity on Goodman’s left lung, which they believed the medication was not reaching. They removed the lump and Goodman was later declared cured of XDR-TB.
Goodman was one of the first people in South Africa to repeatedly and passionately speak out about his struggle with XDR-TV while still on treatment. He works with TB advocacy groups to call on the government to not only broaden access to new drug-resistant TB medicines, but to also invest in TB research and development and to push other governments to do the same.
Thabo Plelesane is a TB survivor from Klerksdorp in the North West Province of South Africa. Thabo has been diagnosed and treated for TB 5 times in his life, the first time being when he was 13 years old.
Today Thabo, now cured of TB, uses his experience to warn others about the dangers of stopping TB treatment. When Thabo was 13 he started skipping treatment as a result of the stigma he was experiencing at school.
“It turned my urine orange, and my classmates mocked me about this,” he recalls During this time South Africa’s Department of Health had not adopted a systematic approach to TB treatment, and no effort was made to directly observe Thabo’s treatment, or to trace family members and friends to see if any of them had been infected.
Both his parents and his niece contracted TB, and TB eventually ruined his father’s lungs, causing his death. “I have had to live with knowledge that by failing to take my treatment properly the TB kept coming back, and that I probably infected members of my family,” he says.
“TB is not only a physical disease but an emotional and mental one, too, and for that a support structure is critical,” says Tamaryn Green, a final year medical student and the current Miss South Africa.
Green was diagnosed with TB while at University, and believes her studies might well have been interrupted if it wasn’t for the support of her parents.
“Another other big issue is stigma – a lot of TB carriers don’t come forward due to fear of what others will think and say, and many stop taking treatment for the same reason. On the other side, many treat TB sufferers poorly out of fear that they will become infected,” she says, adding that she launched the #BreakTheStigma campaign in 2018 to contribute to broader TB awareness.
“It has been incredibly gratifying to receive positive responses from people across the world, saying that they related to my campaign and that it has helped them to start talking about their own TB experiences,” says Green.
Candice Sehoma is the Advocacy Coordinator for the Doctors Without Borders (MSF) Access Campaign in Southern Africa. Growing up in Alexandra township, Candice Sehoma only had access to bucket toilets. It made her see that her community was being deprived of basic human dignity, so in 2012, Sehoma, 23, teamed up with three friends to form the Building Blocks Foundation, an organisation that gives marginalised communities access to flushing toilets.
They started by educating their community about the importance of proper sanitation. Then they began facilitating the process of erecting flushing toilets in Alexandra. Since 2013 Building Blocks has erected 35 communal flushing toilets in 23 areas.
"Access Campaign aims to bring down barriers that keep people from getting the treatment they need to stay alive and healthy. We advocate for effective drugs, tests and vaccines that are available, affordable, suited to the people we care for, and adapted to the places where they live," Sehoma says.
Sehoma recently supported TB survivor activist Phumeza Tisile to file a legal motion in India, aiming to prevent Johnson&Johnson from extending its patent on the salt form of the new drug-resistant TB drug, bedaquiline. Johnson&Johnson maintains its monopoly, it could leave thousands of drug resistant TB patients reliant on a decade old treatment regimens known to cause deafness, psychosis, liver failure, and other serious side-effects.
Media personality Gerry Elsdon was diagnosed with TB of the womb in 2002, and has been publically raising awareness around TB for 17 years, which arguably makes her South Africa’s original TB “ambassador”.
“Like a lot of people I thought TB only affected the lungs, I didn’t realise it was possible to get TB in other parts of your body, until I experienced it myself. I realised there was a deficit of information on TB in public, and felt I could use my profile to do something about this,” she says, although she adds that “people weren’t really listening to the messages to begin with. It took a lot of perseverance, and a lot of reminding myself why I was doing it.”
Today Elsdon co-ordinates the National Ambassadors program on behalf of the National Department of Health, a group of high-profile individuals whose lives have been touched by TB.
“TB remains a highly stigmatized disease and so an important aspect of patient advocacy is to make people who are suffering with TB understand that they are not alone, that there are others like them, and that there is no shame in sharing the impact that TB has had in their lives,” she says.
Elsdon is well placed to evaluate the progress that has been made on TB in South Africa. She describes her excitement at the unveiling of the first GeneXpert machine in KwaZulu-Natal in 2011, “knowing that the use of these machines would revolutionize the diagnosis of TB in the country”.
She speaks of her pride at witnessing the Minister of Health and the President speak at the United Nations High Level Meeting of TB in 2018, committing to the eradication of TB in South Africa their lifetimes.
“There is a lot of work still to do,” says Elsdon, “but South Africa is one of the very few high-burden countries in the world tackling its TB epidemic head on, and I do believe that if the current momentum on TB continues to build that we will get there – we will beat this ancient and deadly disease called TB.”
Dr Zolelwa Sifumba contracted multi-drug resistant TB in 2012 while completing her medical degree as a student at the University of Cape Town in South Africa, and during the 18 months she spent on treatment she pushed her faculty to radically overhaul its approach to occupational health.
“I was infected on my hospital rounds. At the time infection control at some of the hospitals we worked in was not strict – finding a protective mask was often difficult or impossible, and there was a bit of a culture of medical students not wearing masks, as if we were somehow immune,” Sifumba recalls.
Healthcare workers are naturally at risk of TB infection, and according to a 2016 Global Health report, South Africa accounted for 21% of reported healthcare worker TB cases, exceeded only by the number of cases in China.
“To be honest I don’t enjoy telling my story, it was a difficult time and public appearances are not easy for me. But I also know that my testimony has forced improvements in occupational safety for some healthcare workers, and I will continue to speak out for long as healthcare workers in South Africa are forced to work in hostile conditions,” she says.