Interview: “Someone had to do it”, says SA TB activist on Time 100 listTB activist, Phumeza Tisile, has been recognised for her pursuit of justice for people living with TB by being featured in this year's TIME100 Next list. PHOTO: TB Proof

Interview: “Someone had to do it”, says SA TB activist on Time 100 list

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Phumeza Tisile from Khayelitsha was 19 years old when she contracted multidrug-resistant tuberculosis (MDR-TB). She battled the disease for nearly four years, then lost her hearing as a side effect from the cocktail of drugs used to treat the TB. At one stage, a doctor told her to visit a priest and prepare her soul for death.

This year, Tisile (now 33) features in TIME magazine’s 2023 TIME100 Next list, as one of 100 emerging leaders round the world who are “shaping the future and defining the next generation of leadership”. She is recognised by TIME, (along with Indian health activist, journalist and TB survivor Nandita Venkatesan) for their relentless pursuit of justice for people living with TB on different continents.

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Venkatesan, like Tisile, lost her hearing as a side effect of the injectable drug kanamycin which was used to treat her second bout of tuberculosis. Both women, now cured from TB, had surgery for cochlear implants and are able to hear; and emerged as determined activists.

‘Someone had to do it’

“Someone had to do it,” says Tisile, when asked how it feels to be globally recognised for her role in a number of victories in TB activism.

“If there’s an issue relating to TB, I take it on. When I had tuberculosis, it was really hard to understand the disease I had. For one thing, I wasn’t given any counselling. Nobody explained what was going to happen to me. I was just told I had TB and that was it. Then I was given these drugs…many, many drugs, which were so toxic they made me vomit every day – and then I was given an injection that made me deaf, no explanation, just a ‘sorry’.

“I had to learn about TB by searching on Google. And there was scant information. It didn’t make sense that there were no personal stories I could relate to, where I could say, ‘hey, this person had this disease too and I am not alone’,” she says.

When meeting for our interview, Tisile has just returned from New York, where she was for the second United Nations High-Level meeting on TB.

Sitting in a noisy Mugg & Bean in the industrial area of Maitland, close to where she lives with her partner, it’s hard to reconcile this unassuming young woman with the feisty activist who has a formidable global reputation. A week or so ago, she picnicked in Battery Park, New York, with world-famous author and TB activist, John Green, who has often expressed his admiration for her. She’s clearly as at home in high-level meetings with heads of state as she is in township classrooms talking about health.

My brief in this interview, is to try and find out what it’s like to be her; and what it is that forms a human like this; someone who turns her adversity into a mission to help others. But I’m not having much luck getting her to talk about herself.

‘I realised it’s huge’

Dressed in jeans and a T-shirt, she exudes a quiet humility – tinged with disbelief – as she recalls her reaction to TIME’s selection of her being up there with the world’s young leaders.

“TIME interviewed me about my activism, and we spoke about my blog, TB and Me where I documented my journey with TB. I didn’t think much of it because I have been interviewed many, many times,” she says. “Then they contacted me and asked me if I’ve heard of this TIME100 Next – of course I hadn’t – so I searched and saw that the people on that list are like celebrities on TV. I realised it’s huge!”

tray with used needles
Tisile lost her hearing as a side effect of the injectable drug kanamycin which was used to treat her tuberculosis and now wears cochlear implants in order to hear. PHOTO: Nasief Manie/Spotlight

TIME’s list of outstanding leaders includes young Ukrainian deputy prime minister, Yulia Svyrydenko, who is “laser-focused on laying the groundwork for Ukraine’s reconstruction”; geographer and climate activist Kristina Dahl who is tackling fossil-fuel companies for their role in wildfire activity in the North American West; and captain of India’s women’s national cricket team, Harmanpreet Kaur, who is “transforming women’s cricket”. The youngest is 17-year-old Dylan Brandt, who is fighting for the rights of trans kids in Arkansas.

The list also features the charismatic, KwaZulu-Natal-based Democratic Alliance politician, Chris Pappas, who as mayor of uMngeni, is recognised for his outstanding service delivery to his community.

Patent victories

Tisile and Venkatesan recently made headlines when United States-based pharmaceutical company Johnson & Johnson confirmed it will not enforce the patents for its breakthrough tuberculosis treatment bedaquiline, which is used to treat multidrug-resistant tuberculosis, in 134 low- and-middle-income countries. The drug’s primary patent expired this year, but the company attempted to extend its monopoly using secondary patents.

In 2019 the two women joined Médecins Sans Frontières in opposing a secondary patent on bedaquiline in India. In March this year the Indian patent office found in the activists’ favour. This paved the way for better access to generic versions of the drug for people with drug-resistant TB.

Tisile seems to be as at home in high-level meetings with heads of state as she is in township classrooms talking about health, here she is at the 2016 World Union Lung Conference. PHOTO: Steve Forrest/Union Lung conference

During the interview, Tisile repeats and re-repeats her goals and aspirations as a TB activist, speaking with a quiet determination born of first-hand experience. Her story is well known in TB circles – she endured the older, toxic drugs and lived to tell the tale. Now she’s fighting for change for others.

Indeed, had Tisile from the outset been treated with newer drugs like bedaquiline rather than kanamycin, she would very likely not have suffered any hearing loss.

‘So few voices’

Tisile was diagnosed with TB in 2010 as a first-year student. After months of unsuccessful treatment she was diagnosed with extensively drug-resistant TB (XDR-TB), the deadliest form of tuberculosis. The MDR-TB treatment left her deaf and she was told her survival chances were 20 percent. She was cured from TB, in her words, “against all odds”, and in 2015 had surgery for cochlear implants and can now hear.

Astonished by the lack of information on tuberculosis, she started blogging about her day-to-day lived experience of the disease. “It fascinates me that there are so few voices of people telling their stories of TB,” she says.

With her mother, Nokuzola constantly by her side, Tisile related her odyssey with TB, asking questions, initiating petitions, and tackling issues as she went along. “Why was I not told that the injection I was given would cause hearing loss? Why weren’t patients told about this drug called bedaquiline that could potentially cure them? Why can’t they be given the most basic information so that they can make informed decisions? Why is TB research taking so long? Why is there so little progress in TB diagnostics, medication and vaccines?

“I didn’t even know young people could get TB. There was barely any information. I found out that pharmaceutical companies make these drugs…and then sell them at higher prices. It didn’t make sense to me that they’d make something to help sick people, but it’s not accessible to the poor. I learnt about TB advocacy, and I learnt that my voice counted.”

“And why were the pharma companies fighting to make a vaccine for COVID, but nobody is fighting to make a vaccine for TB, which is a leading cause of death in the world? Why is nobody fighting to fund TB? Is it because COVID affects rich countries?” she says.

‘TB always came back’

Born in Port Elizabeth (now Gqeberha), Tisile moved to Khayelitsha with her mother (who was a domestic worker at the time but has since retired to the Eastern Cape) when she was about six. “My mother moved us there for better opportunities and we stayed with my aunt.” Her father stayed in Port Elizabeth to work.

Tisile says she was a shy child who loved the academic side of school, and enjoyed running, drama and climbing mountains. When she contracted TB in 2010 she was studying human resources at Cape Peninsula University of Technology (CPUT). After getting her cochlear implants, she moved to the University of Cape Town (UCT).

prepping TB meds
In 2019 Tisile, along with activist Nandita Venkatesan and Médecins Sans Frontières, opposed Johnson & Johnson’s secondary patent on the TB drug bedaquilline in India, used to treat MDR-TB. This year, the patent office found in the activist’s favour. PHOTO: Nasief Manie/Spotlight

She graduated from UCT with a social sciences degree and currently works at as a research assistant, project lead and an advocacy officer at activist organisation TB Proof. In her spare time, she says she loves reading and going to the beach.

“I wanted to carry on studying – maybe get my PhD and become an academic, but TB always came back. I keep trying to go back to study but then work just piles up…maybe this is my calling,” she says.

As we talk, and look back on Tisile’s life, one gets the sense of a spirited and curious person, who, right from the start of her disease – “I was so frightened; I couldn’t even walk up the stairs at campus” – was always taking stock of what was going on around her.

Her time at Brooklyn Chest

Tisile speaks poignantly of her time spent at Brooklyn Chest Hospital, where she stayed for nearly a year and which became almost home; how she observed the nurses working, often against the odds, to help patients. “I remember Nurse Nortje, who used to come every morning and shout ‘pille’ (pills) – and then it was the crushing of all these terrible tablets, into yoghurt or something. I got so sick of it…”

“Nurses don’t get the respect they deserve,” she says, “People say they are rude, but I could see how hard they were trying, to do more with the few resources they have. I saw how, when there were not enough TB meds, they would try to give us half…I saw how they had to break up the tablets and crush them for the kids with TB. There is no liquid form for younger children, so they have to take the same tablets as adults. You could just see how hard it was for them. People never talk about those things,” she says.

There’s also the poignancy of how her mother walked the hard yards with her, trying to find a cure; of how the family’s only initial knowledge of TB was from uncles working on the mines in Johannesburg.

entrance gate with board that reads Brooklyn Chest
Tisile spent almost a year at the Brooklyn Chest Hospital in Cape Town, where she received part of her TB treatment and came to admire the nurses who worked in the wards. PHOTO: Nasief Manie/Spotlight

There are more stories of living at Brooklyn Chest, a place she grew to love. “Everyone had TB, and the food was amazing. They had a gym and a library. I loved that library,” she recalls. (Spotlight previously profiled Brooklyn Chest as part of our Hospital Histories series.)

She speaks of what it was like to be in a ward close to a children’s ward. “Sometimes their parents would pass away in the same hospital and they’d have nowhere else to go. The nurses would not know what to do with these orphans,” she says.

‘That dream is not going to happen’

When asked what’s it like, being a “TB person”, which is what Tisile has often called herself, she’s unsure about how to answer. “I don’t know how to answer that,” she says. “I guess it just happened. I saw something wrong and just wanted to fix it. It’s that simple. Maybe this is my calling.”

“At 19, when I got sick, I should have been having fun, drinking alcohol, just being me. I loved studying but I had to stop. If I hadn’t got TB, my life would have been totally different. I might have been an academic. I love interviewing people and doing research,” she says. “Sometimes I wish I could just live my life and not worry about what people with TB are going through, but that dream is not going to happen. You win something, then another challenge comes along…for now, this takes priority.”

The next big challenge, says Tisile, is the ‘Time for $5’ Campaign by MSF, which is calling on the US diagnostics company Cepheid, and its parent corporation Danaher, to drop the price of its GeneXpert tests to $5 a test to enable many more people to get fast, accurate diagnosis so that they can receive treatment.

When pressed a last time on what made her the activist she is today, she says “it was just the unfairness of it all, and the fact that people didn’t know that TB is the leading cause of death from infectious diseases.”

“And the fact that it mostly affects the poor,” she continues, “so there’s barely no research and development on the disease. The way the drugs were toxic and the number of pills (we had to take) didn’t make sense to me…it was the stigma; the blame.”

As we part ways, Tisile mentions that the TIME100 Next gala dinner is in a few weeks’ time. Her ticket is sponsored, and her costs are covered, but, she says, she’s not going to make it.

“Nandita will be there, but I’ve had bad flu; and I am not fully recovered,” she says. “I’m still coughing like crazy. COVID numbers are still on the rise. I’ve got more trips coming up – Rwanda, for a health summit and then Namibia, and then France. Also, the gala dinner will be a big party in a big venue. That’s hard when you have cochlear implants. It will be loud, people will get drunk, and the speeches won’t be that serious. It’s just a party. I don’t need to go.”

a cocktail of TB DRUGS
Part of what drives Tisile’s activism is that the older TB treatment she herself endured contains a lot of drugs that are often toxic with a lot of side effects, which she is now fighting to change for others. PHOTO: Kathryn Cleary/Spotlight

Although they have much in common and have achieved much as activists in different parts of the world, Tisile has only met Venkatesan in person once, at a conference. She’s looking forward to meeting her again soon. “We both had XDR-TB, both lost our hearing and were both lucky enough to get cochlear implants. We will see each other in Paris later this year…and we will celebrate these wins together, because they are BIG wins,” she says.

As Spotlight was putting the finishing touches on this article, Tisile had indeed gone to Paris to attend the Union World Conference on Lung Health.