Africa Health Research Institute clinical research fellow Dr Zolelwa Sifumba contracted multidrug resistant tuberculosis (MDR TB) during her medical training. She has since become an advocate for improved TB treatment and patient support and care.
To mark World TB Day 2022, we asked Zolelwa to share some of her perspectives as an MDR TB survivor, a doctor, TB care advocate, and most recently, TB researcher, with us.
You contracted multi drug resistant TB when you were 22 and studying medicine. Would you talk us through your experience?
I woke up one morning with a painful lump on my neck and no other symptoms, I had no idea what it could be. It was difficult to seek care due to schooling commitments but once I did find the courage to, I was told it was highly likely that this was TB. I struggled to believe this because I was not part of the usual demographic said to be at risk and I had not understood myself to be part of a high risk group as a health care student. A few days later, after a biopsy, I received a shocking call. My results came back saying that I indeed had contracted a form of TB resistant to both Rifampicin and Isoniazid. This was a painful, confusing diagnosis and I was in denial well into the first few months of suffering due to the harsh treatment and its side effects; I couldn’t believe it, I was sure there must have been a mistake.
Nausea, vomiting, joint pains, diarrhoea and immense pain from the daily injectable; accompanied by the threat of life-threatening side effects as well as stigma, isolation and depression. I was sure that if the TB didn’t kill me, the medication would; either that or I would kill myself. Once the injections became too much, I had a port inserted surgically as another way to receive an injection known to cause hearing loss and kidney failure.
With little support in my own corner I enlisted the help of a Western Cape based organisation named TB Proof, who took me in like family, giving support only TB survivors could give me and also giving me the chance to take the stage (nationally and internationally) and share my experience with the world to vocalise for those made voiceless the struggles of treatment and the need to protect ourselves: all of which I believe saved my life.
Having MDR TB and completing the treatment process was the hardest thing I have had to do in my life. I got to understand why people still die of TB, and I honestly wouldn’t wish it on my worst enemy.
(You can read more about Zolelwa’s experience here)
What is the difference in treatment for ‘regular’ TB and MDR TB?
MDR TB is TB that is resistant to the medication usually used to treat regular TB effectively, meaning the usual medication will not kill the bacteria treating and curing the person. Due to this, other stronger (and sometimes more toxic, harder to tolerate) medications are used to treat MDR and for longer amounts of time. When I was diagnosed, MDR was treated for 18 to 24 months with six or seven different medications, meaning 21 pills, as well as a painful injection daily for six months. Things have improved over the years, but it’s a lot more pills and a longer duration than the four medications for six months required to treat regular, drug sensitive TB.
Do you have any words of encouragement for patients on treatment, or their family members?
Please, recruit support!
The treatment process can become extremely painful without adequate psychological and social support.
Those who have survived it can be strong allies: the advice and comfort from someone who understands is priceless and can save lives. Also, don’t give in to urge to give up. I had to convince myself daily to stay fighting and remind myself daily of my goal: to be healthy again.
Family members and friends – SUPPORT YOUR LOVED ONE, please. This is one of the biggest fights they will fight, a fight that millions of people globally succumb to due to various challenges; a fight they can only win with support.
What can we do to improve treatment for TB patients?
Treatment needs to include strategies to support and assist them through strategies offering psychological and social support, as opposed to just giving medication and expecting compliance.
The medications are extremely difficult to adhere to, and the health system difficult to navigate while ill from TB and its treatment, with only a few health professionals truly sensitised to the experiences of those on treatment. I wish they could understand. I always believed that if those in leadership roles and those treating TB truly understood the pain of it all from the perspective of a survivor, better care would be offered. This is why I share my story; I would love to sensitise our health force and make them understand.
The 2022 World TB Day theme is ‘invest to end TB’. In your opinion, what more needs to be done to end TB?
We need to invest in supporting people through treatment as opposed to demonising those who struggle through it, because it’s not easy at all. People don’t quit because they aren’t serious about their health, they quit because the treatment is difficult to take. I considered quitting every single day of those 18 months. We need to approach those battling on treatment with understanding and care, it’s not enough to just put them on medication. We need to improve TB care.
Your current work at AHRI focusses on subclinical TB. Can you tell us a bit more?
In 2018 and 2019 AHRI conducted a large study called Vukuzazi, in hopes to gain insight into fundamental interactions between HIV, TB, environmental exposures and non-communicable diseases in South Africa. Of those newly diagnosed with TB and referred for care by the study, some reported no symptoms of TB, meaning they would not have been picked up on screening and referred for further testing.
My work at AHRI consists of firstly learning how to do research so I too can contribute to policy change globally in the fight against TB; and secondly following up on those diagnosed with TB from the study.
My specific interest is in the linkage to care and outcomes for people with asymptomatic (or subclinical) TB and understanding the care-seeking journey of patients diagnosed with it, including finding out how they were feeling before diagnosis to better understand how systemic improvements can be made. I also have an interest in exploring the experiences of healthcare providers, focusing on their conceptions of asymptomatic TB.
Top image: Dr Zolelwa Sifumba, photo by Thuli Dlamini