Marking World TB Day with Dr. Zolelwa Sifumba – Watch the webinar

Zolelwa speaking at 5th annual TB conference in Durban, 2018. Image: Still from UnMasked.
Zolelwa speaking South Africa’s 5th annual TB Conference, 2018. Image: Still from UnMasked: We All Breathe 

To mark World TB Day 2020, RESULTS UK had organised that Dr. Zolelwa Sifumba would come to London to meet with decision-makers and discuss her experience of surviving multidrug-resistant Tuberculosis and working as a healthcare professional in a low-resource setting. In light of the coronavirus pandemic, it wasn’t safe for her to do so, but we still wanted to find a way of marking the day, to help us understand more about the challenges faced by people affected by TB, how their experiences might change as a result of COVID-19, and what we can do to tackle both. 

Zolelwa Sifumba is a medical doctor from Durban, South Africa, currently doing her internship in the Department of Health and working as a community service medical officer. She contracted multidrug-resistant tuberculosis (MDR-TB) as a medical student. After struggling through a very trying 18-month treatment process and finally overcoming the disease, she has become an international advocate to help educate, raise awareness and show that TB can be beaten.

Zolelwa featured in a recent documentary on MDR-TB, called UnMasked: We All Breathe, which shines a light on the challenges faced by those undergoing treatment for MDR-TB. Featuring three South African medical doctors, it also looks at what it means to fight a deadly infectious disease at work and in your own body.

During a webinar on 25 March we shared short clips from the film alongside some reflections from Zolelwa, as well as a Q&A with Dr. Morten Ruhwald from FIND who offered an insight into the research and diagnostic landscape for TB in lowe- and middle-income countries. Our discussion covered some the following questions:

What keeps you motivated when it comes to doing advocacy? 
What impact do you see it having on people affected by TB and frontline healthcare workers in low-resource settings like South Africa? 
What investments and policy changes would you like to see in the next year – both to improve TB programmes and make health systems more resilient to shocks like COVID-19?
Have you seen any progress on diagnosing TB in South Africa?

 

Thank you to everyone who joined us! For those who missed it, you can watch the recording below:

There were a few audience questions we didn’t manage to cover before running out of time, so we have answered them below:

‘Does your activism also extend to what may be considered ‘low socio-economic status’ communities or do you mostly focus on medical professionals? If so, how are your efforts received in those communities?’ Janina Jochim

I have a history of speaking not only to healthcare professionals but also community members in South Africa. One World TB Day, a few advocates and I attended and spoke at a health day at a clinic in Cape Town. On another, I attended the Government’s National TB Day Celebration as a TB ambassador, on another I was invited by MSF to address health care workers and community leaders in Eshowe, an old town in KwaZulu-Natal. 

I don’t get many opportunities to engage with communities and I would like to do more of that. The efforts I have made have been received very well. Being a young black doctor with a powerful story and message that is relatable, I get through to the members of communities well. (Zolelwa, via email) 

‘What challenges do you face as an activist and advocate in South Africa?’ Caroline

The challenges I face are the following; no development programmes exist here to train me as an advocate in the media space, or how to get my messages across via all forms of social media. There is a lack of funding to pursue training to improve my skills and a lack of access to important networks in South Africa that would assist me in getting my message out. There’s a real lack of mentorship also. (Zolelwa, via email)

‘If South Africa has stopped using injectable treatments for TB why are they still used around the world – is it cost effectiveness?’ David 

The price of Bedaquiline definitely has something to do with it, with the cheapest price for a six month treatment course being US$ 400. Many countries pay substantially more than this. The injectables used in the treatment of multidrug-resistant TB are mostly off-patent and therefore considerably cheaper to procure. Other challenges, like drug-registration and stockpiles of the injectables have also hampered roll-out. 

Last year, the World Health  Organization updated it’s guidance and called for the widespread adoption of an all-oral MDR-TB regimen, with injectables only to be used in exceptional circumstances. In addition to new data showing the effectiveness and safety of an all-oral regimen, researchers have shown bedaquiline to be cost-effective because of the reduced treatment length, increased treatment completion and success rates, and reduction of side-effects that mean people are less likely to face catastrophic costs for years after completing treatment. 

Still, many countries say they don’t have the money to scale up the use of bedaquiline. Campaigners all over the world are calling for increased investments in TB programmes. In addition, they are calling on Johnson & Johnson to drop the price of bedaquiline to reflect the significant public investment that went into the drug’s development and to enable more countries to make the drug available to MDR-TB patients. (Janika Hauser)

 

Resources mentioned during the webinar:

RESULTS UK World TB Day Social Media Toolkit 

RESULTS UK March campaign action: Fighting TB Post-Brexit 

Watch UnMasked: We All Breathe full documentary

Bedaquiline (treatment for TB)

Report from MSF (Doctors without Borders)

Learn more about FIND’s work

GeneXpert diagnostic test. GeneXpert can also be used to detect TB and the virus that causes COVID-19 using a different cartridge.

Find out a bit more about social support for people with TB 

Universal* Health Coverage. *Terms and Conditions Apply. (Report from RESULTS UK) 

Get involved with RESULTS UK grassroots volunteer network