THE BLOG

Better Deaf Than Dead?

The current TB treatment is 100% likely to cause at least one side-effect (like deafness) but less than 50% likely to offer a cure for the disease. 

07/12/2016 04:58 SAST | Updated 07/12/2016 04:58 SAST

By Dr Jenny Hughes

I always imagined that if push came to shove I would choose the former – I mean, life without a soundtrack is better than no life at all, right?

But after witnessing the experience of one 24-year-old in Khayelitsha, I'm not so sure.

Zoliswa's was one of those cases that a TB (tuberculosis) doctor remembers as a classic example of how difficult MDR (multi drug-resistant) TB can be to manage in a world with only limited interest in this neglected disease.

Zoliswa sat in front of me and stared blankly ahead as my colleague, TB counsellor, Buci, explained that MDR-TB causes the same disease process as regular TB, but cannot be treated with the usual four drug combination of tablets taken daily for six months.

It took some repeating the facts to convince Zoliswa that this disease was most likely transmitted to her through the air by someone infected with the resistant strain – simply because she happened to breathe in the wrong place at the wrong time. But she didn't flinch when we told her that her new treatment regimen – 15 tablets to be taken every day for the next two years – would include a deep intramuscular injection into her buttock, to be administered at least five days a week for the next six to eight months.

She'd probably heard enough and couldn't take in much more information by the time we listed the potential side-effects of the medications: nausea, dizziness, burning pains in the feet, confusion, liver damage, and a significant risk of permanent hearing loss from the injectable agent, kanamycin.

Of course, she consented to the treatment because, after all, what other choice did she have? This was all we had to offer her for the disease that was sure to kill her if left untreated – ancient, toxic, expensive drugs that are required to be administered under close observation by a healthcare professional every single day to ensure the patient doesn't succeed in throwing the worst ones down the toilet.

Sydelle WIllow Smith
Simphiwe visits his local clinic in Kuyasa, Khayelitsha, every weekday to receive his daily clofazimine injection and collect his treatment.

You can't blame them, the current treatment is 100% likely to cause at least one side-effect but less than 50% likely to offer a cure for the disease.

Not six weeks after commencing treatment, Zoliswa began to notice a ringing noise in her ears. A few days later she reported to the doctor that it felt like she was listening to the world from the bottom of a swimming pool, and by the time she reached the audiology screening service she was unable to hear anything more than the sound of traffic on the main road outside of her house.

In desperation we immediately withdrew the injection from her treatment regimen, but it was too late – the damage was done and she would never hear properly again.

At the time, MSF was managing to fund only a small supply of linezolid, a prohibitively expensive drug which was usually reserved for severe lung infections in hospitalised patients but was showing promising results when used to treat more severe strains of DR-TB in other parts of the world. We considered linezolid to replace the injectable agent. But at the same time, we had two other more critical patients who also needed linezolid. MSF could afford to offer the drug to only one of these patients that month.

It was not an easy choice. But Zoliswa, as the less critical case, lost out. We decided to continue her injections anyway in an attempt to offer her a decent chance of cure – she was already deaf, so what more harm could be done?

Unfortunately, the odds of her situation were stacked against her. It was difficult for her to walk to the clinic every single day for the painful injections and the handful of pills she had to swallow on an empty stomach. There was very little food at home. She never managed to finish primary school, so was unable to read and write and had no income of her own. Her mother had died a few years before and she was the only unmarried sister remaining in the house who could look after her aging father – they barely survived on his state pension. He didn't understand why she even had TB, so he had no idea how to support her.

Doctors in the TB world are not foolish enough to think that one or two new TB drugs will fix everything, but one thing is for certain: no TB doctor I know is sitting back and accepting the current regimens without a fight for better access to better drugs for the majority of people affected by this life-threatening disease.

We tried to visit her home to explain the situation to her family, but first needed her consent to disclose her personal information – how do you communicate with someone who cannot hear, who does not read or write, and who cannot see the lips of the person wearing a mask to protect from breathing in the TB bacilli that she was still coughing out?

Her attendance for daily treatment became sporadic. Eventually she disappeared from clinic completely and it became impossible to trace her. She may have moved to another area to live with a friend but her family had lost communication with her. We found out a few months later that she had been admitted to a nearby hospital with worsening TB symptoms – either the treatment she had received was inadequate or she had simply given up taking it; she finally succumbed to a massive haemoptysis (coughing up blood).

For Zoliswa the choice of 'deaf or dead' was a luxury she never had.

As with every patient death, we ask ourselves: what could have prevented this outcome? What can we do now to prevent this from happening again in future? Would access to linezolid or other new drugs from the outset have saved Zoliswa's life?

Doctors in the TB world are not foolish enough to think that one or two new TB drugs will fix everything, but one thing is for certain: no TB doctor I know is sitting back and accepting the current regimens without a fight for better access to better drugs for the majority of people affected by this life-threatening disease. And that is why I still work for MSF in Khayelitsha.

Jose Cendon
Dr. Jenny Hughes

Dr Jenny Hughes, a TB doctor in South Africa working with Doctors Without Borders (MSF), graduated from Cardiff University in Wales in 2005. A few years later, she moved to South Africa to gain experience in a different healthcare setting. Witnessing first-hand the devastating effects of TB on impoverished communities is what ignited her passion to treat patients suffering from this curable but largely neglected disease. Since 2010 she has worked in Khayelitsha, Western Cape, where MSF runs a strengthened regimen programme for drug-resistant TB patients that incorporates new drugs into their treatment.