The AMR Narrative

Overcoming stigma to survive and advocate for extensively drug-resistant TB and AMR

My Story: Phumeza Tisile 


My name is Phumeza Tisile and I am a Research Assistant, and an Advocacy Officer at TB Proof, based in Cape Town, South Africa. I have a degree in social sciences and grew up in Khayelitsha outside of Cape Town. I am a blogger and I like to travel and climb mountains. I am also a ‘TB person’ – more specifically, I am an Extensively Drug-resistant TB (XDR-TB) Survivor advocating for improved diagnosis and treatment of TB. Through a series of blog posts from 2010-2015, I have communicated my lived experience of TB on the Médecins Sans Frontières (MSF) TB & Me website. I have also been recognised in the TIME100 Next list as an influential figure emerging as a leader in the field of advocacy.

As a first-year student at the Cape Peninsula University of Technology (Cape Town, South Africa), I visited the doctor in early 2010, where I was initially sent away with pain/fever medication and cough syrup. Some of the better-known TB symptoms such as night sweats and constant coughing were not present. A sputum test came back as negative for TB and the doctors could not provide answers as to why I was losing weight rapidly and becoming weaker by the day. With advanced diagnostic machines not being available in South Africa at the time, the next step was a chest X-ray and a positive result for TB which was a surprise to everyone.

3 long years of TB treatment


What followed next was a journey of over 3 years of TB treatment. This began with first-line TB treatment, which soon proved to be ineffective. By May 2010, I had been diagnosed with Drug-resistant (DR) TB, and by that summer, the diagnosis was upgraded to Multidrug-resistant (MDR) TB. It was later found that there was further resistance to the second-line treatment Kanamycin injection, and by 2011 my diagnosis was amended to Extensively Drug-resistant (XDR) TB. The drugs were not working, and it seemed that this strain of TB was resistant to everything that the doctors could offer.

Between 2010 and 2013, I endured extreme lows, such as the loss of a close friend at the clinic in 2012, the diagnosis of Pneumothorax, infected glands in the lungs, a tumour scare, and surgery to remove fluid build-up in my lungs, which caused the breakage of two ribs due to my frailty at the time. Sputum smear test results came back repeatedly showing a positive result for TB. The negative TB results helped to provide some hope, however, there were times throughout my treatment that I was given an unimaginably terrifying prognosis. At one point, doctors gave me a 20% chance of survival, at another time they advised me to consult with a priest as it was believed there was no chance of survival. 

Only a miracle and determination could save me


In my blog posts from 13th January 2012, I wrote “They say it is not likely to go back to negative culture, only a miracle will happen in this case”. However, in many of my additional blog posts, I demonstrated my determination, saying “I’ll finish this race! It doesn’t matter how long it will take, the point is the finishing line, that’s all”. In the end, it was a combination of Linezolid and other drugs which was successful at curing the TB. I completed treatment in 2013 (after 3 years and 8 months on toxic medication) and celebrated being TB-free on 29th August 2013.

I am in full praise of the Lizo Nobanda Clinic in South Africa, where I spent much of my time throughout TB treatment. I also credit Médecins Sans Frontières (MSF) and the clinic for my recovery, both in regard to the medicines and the support I received, including encouragement to adhere to the treatment regimen and light-hearted moments such as an end-of-year function, with games and food. Having said that, DR-TB treatment was far from a party.

For me and many other people affected by TB, the sheer volume of oral drugs and injections taken every day for several years is overwhelming. I have spoken about how I would have to take 20+ drugs and have 2 injections per day, plus supplements. Ingesting multiple pills every day was a challenge. I would vomit daily and to this day, I still have a strong aversion to yogurt and juice which I used to take with the medication. Side effects I experienced were skin problems and numbness from the injections. Other side effects of TB medication can include blindness, permanent nerve damage, hallucinations, and psychosis.

Losing my ability to hear


In my experience, the worst side effect of the TB medication was deafness, which was linked to the Kanamycin injection early on in my treatment. In October 2010, I woke up one morning unable to hear. In one of my blog posts I reflected about how this felt, saying “On the first day I went deaf it sounded as if people were talking from a distance or down a deep hole, but as time went by their voices faded away”. It was a deeply traumatic experience to suddenly lose hearing, particularly as I was not aware of this potential side effect. I was then moved to a different ward.

In October 2014, tests confirmed that I was a good candidate for cochlear implants to enable me to hear again. It was an extremely emotional day when, in March 2015, I had the implants fitted (the internal part of the implant system is surgically implanted inside the cochlear inner-ear to stimulate the hearing nerve). But it was not an easy road, adjusting to the implant and going through listening training was a challenge. I crowdfunded my implant surgery, which cost around $40,000 USD, and many people have contacted me since, asking for financial help for the same surgery. Since then, I have encouraged others to share their own stories to raise money.

Stigma can be a barrier to advocacy


People affected by TB often do not wish to talk about their experiences, this is largely due to stigma. As a Research Assistant at TB Proof, my research tries to understand the stigma TB patients face in communities, at home, and in healthcare facilities. We need further research on how this affects treatment adherence. There is so much to be done to reduce stigma in healthcare centres. Pamphlets titled ‘HIV/TB’ communicate the incorrect message as a package and that one cannot be diagnosed without the other, this can intersect with HIV stigma. The language used should also be considered, healthcare workers should use the phrase ‘Person affected by TB’.

TB stigma can also be linked with a lack of knowledge and diagnosis, my thoughts at the time were,  “I thought it only happened to certain people”, but now I emphasise through my work that anyone can get TB. I also try to spread the word that only medicines prescribed by doctors can cure TB, however, there are still many who believe that ‘muthi’ (traditional medicine) or holy water, can be effective.

I do not know how I contracted TB, but I focus on what needs to be done to improve TB diagnosis and treatment. In early 2013 I co-wrote, ‘Test Me, Treat Me: a drug-resistant TB Manifesto’ and in May 2014 handed it to world health leaders at the World Health Assembly at the United Nations, Geneva. I advocate for shorter treatments, better diagnosis and medication with fewer side effects. South Africa was one of the first countries to stop using the Kanamycin injection due to voices like mine. Much of my research also looks at how TB affects mental health and how this is linked with substance use.

Finally, I did not receive TB counselling and believe that it should be readily available, combined with full and clear disclosure of potential side effects of medications. TB is the second leading infectious killer in the world – why is there only one TB vaccine available which is over a century old?

Understanding the link between TB and AMR


Tuberculosis (TB) and Antimicrobial Resistance (AMR) are interconnected as TB, caused by Mycobacterium tuberculosis, is a bacterial infection treated with antibiotics. The emergence of drug-resistant strains of TB, stemming from inadequate treatment or misuse of antibiotics, contributes to the broader issue of AMR. Both TB and AMR highlight the importance of responsible antibiotic use to ensure effective treatment and mitigate the global threat of Antimicrobial Resistance, emphasising the need for comprehensive strategies in infectious disease management to address both of these critical public health concerns.

Phumeza Tisile

In 2010, I was diagnosed with tuberculosis and was forced to stop my studies at Cape Peninsula University of Technology to go for treatment. Despite this, my condition did not improve, and after about five months of treatment, first for “normal” TB and then for multidrug-resistant TB (MDR-TB), I was finally diagnosed with extensively drug-resistant TB (XDR-TB), the deadliest form of the disease.

Stigma continues to be a major barrier to providing high-quality person-centered TB care. TB Proof is committed to destigmatising all forms of TB.

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