“People think they are TB proof, but they’re not.”
These words of caution come from Arne von Delft, a South African doctor whose wife, Dalene – also a doctor in South Africa – survived a two-year battle with drug-resistant TB. Their powerful story has been documented in many articles and videos over the past two years.
Arne and Dalene worked with colleagues to found TB Proof, a movement of health workers and students dedicated to educating others about the dangers of TB, and also to advocating for improved TB treatment and prevention.
“We are trying to empower health care workers to use their own experiences to protect others from this terrible disease. If health care workers can’t lead the charge against a disease then who will?” said Arne.
Today is World TB Day and the global-TB fighting community is rallying around a call to reach the 3 million people who will get TB every year, but who don’t receive the care they need. But we will never reach the 3 million if we can’t protect and support the doctors, nurses, and other health care workers on the frontlines against TB.
“Health care workers are an extremely precious resource, and in South Africa and in many other countries, we don’t have enough of them. We must protect the staff we need to fight back against the bigger epidemic,” said Bart Willems, a member of TB Proof and a doctor who also contracted TB at work.
I met Arne, Dalene, and Bart in South Africa last year while attending the International Conference on AIDS and STIs in Africa, in Cape Town. They introduced me to Zolelwa Sifumba, a 23- year-old from the Eastern Cape, South Africa who contracted drug-resistant TB as a medical student, and has now joined TB Proof to share her story and protect other health care students and health care workers. The story of her struggle with drug-resistant TB is painful, inspiring, and ongoing. She was kind enough to let us in on her journey and you can read more of her writings at http://blogs.msf.org/tb/author/zolelwa/.
How did you contract TB?
I was in fourth year medical school, starting to do clinical work like taking bloods, and seeing and interviewing patients. We were told to wear masks in school, but when we got to the hospital none of the senior doctors were wearing masks and people would look at you funny if you wore one. One day I had a painful lump on my throat and straight away the diagnosis was TB. When the culture came back, it was drug-resistant TB.
How did you react?
I didn’t think I could get TB – I was young and healthy. It was a big shock and I didn’t believe it at first. But when I started treatment and injections every day it dawned on me this thing was painful and very real.
What was treatment like?
For the first 6 months, there were really painful injections, but then I had a port inserted in my chest as I couldn’t take the injections every day. I also have to take 21 pills every day — disgusting pills, they smell, they make you vomit. But I have to take them every day. The duration of treatment is 18 months to two years so I’m waiting to hear when I can get off of them.
How did your vision of the future change when you were diagnosed with TB?
I didn’t have a vision for my life anymore. Once I had dreams for myself, I was at the top of my class and the future looked bright for me. But now at the lowest moment, I don’t even want to go back to medicine. And at times I didn’t even want to be alive anymore. I try not to think about it – as soon as I think about it the depressed thoughts come back. It comes in waves – some days are good, other days are really horrible. I’m not back at school yet, but hopefully I will be able to go back in 2015, although I’m still afraid of being a doctor.
How did you get involved in TB advocacy?
TB Proof came to the University of Cape Town to do a talk. And wow, I was so excited that someone had experienced the same things as me. I had been alone for so long and no one understood, but they took me in and I started doing talks. I feel like I’m giving back. If I could prevent just one more person from getting infected I’d be proud of myself. I’d never wish this on any person.
What do want to see changed?
AIDS advocates have gotten treatment reduced to one pill a day. If could get a million dollars I would put that into making a new TB drug for MDR-TB.
What is hopeful?
I think it’s great that people, especially in the AIDS community, are increasingly realizing TB is important.
I started blogging about my story on MSF’s website in September and I’ve gotten a lot of feedback from that, especially from students. While I feel like this experience has almost ruined everything, it has also introduced me to the world of advocacy. And I want to advocate for people who don’t have people to talk to or who don’t know who to speak to. It’s up to us to tell people these drugs are bad and they’re killing us.
Learn more about TB Proof and how you can join their movement at www.facebook.com/TBProof