Goodman Makhanda and Jennifer Hughes: Drug resistant TB—dying for better treatment

msflogoTwo weeks ago there was a small celebration in a primary care clinic in Khayelitsha, South Africa. Siyabulela Qwaka* was officially declared cured after taking more than two years of treatment for pre-XDR TB (extensively drug resistant tuberculosis). This is hugely significant given that the chance of cure for someone with pre-XDR or XDR TB is less than 20%.

Siyabulela Qwaka was one of the first patients enrolled in a pilot project run by Médecins Sans Frontières (MSF), in collaboration with the local health departments, to improve treatment outcomes among people with pre-XDR and XDR-TB as well as those in whom MDR (multidrug-resistant) treatment is failing. MSF joined the local clinic staff to congratulate him on being the fourth patient in the project to be cured. Tears pricked the eyes of all who listened to him as he recounted the difficulties of dealing with the shock of the diagnosis (“But I’m not even HIV positive…”), the horrendous daily side effects of the treatment, the stigma of being labelled a “bad TB patient” who brought the disease upon himself (despite never having had TB before), and the willpower needed to drag himself to the clinic every day to wait for pills which, he was told, may or may not cure his disease. The clinic staff and community workers who supported him deserved to feel proud of this achievement, which is also their achievement—Siyabulela was not always the easiest person to convince that the treatment was his only option if he actually wanted to live to pursue his career in information technology.

Goodman Makhanda

It was a touching occasion, a small recess in the battle to detect, treat, and eradicate DR-TB from the local community at least. But as someone recently diagnosed with XDR TB, I questioned why Siyabulela should have to be so thankful. Is it because the doctors finally received the correct diagnosis of pre-XDR-TB only four months after he first came to the clinic with TB symptoms? Or should he be thankful because he was offered a drug regimen which the doctors thought might work, but they couldn’t be too sure? A drug regimen that he had to take without question and just wait and see whether these would be the last years of his life? Or should he be thankful because he was considered eligible, that he qualified, that he was lucky to be in Khayelitsha so that he could get the drug linezolid, which is too expensive for his government to make available for people without medical aid in his country? Or is it because he was told to swallow 20 tablets every day for two years and to expect horrible side effects that he had to just push on through and count himself lucky because there were no other options? Or finally is it because he was not one of the other four people who started the same treatment, for the same disease, at the same time as him, and who are all now long dead?

I want to know why, if there are thousands of people being diagnosed in South Africa every year, I had never even heard of DR-TB before I become infected—despite being a diabetic patient who has attended a local clinic at least every month for many years. If this disease really is the killer bug that people get from just breathing, shouldn’t people be shouting about it from every clinic, taxi, shebeen, school, and overcrowded shack in Khayelitsha? Shouldn’t we be demanding to know why we can get antiretroviral treatment if our CD4 count is 350, only to still be at risk of dying of TB? Shouldn’t we be demanding to know how to protect ourselves and our families from an airborne disease which affects everyone regardless of race, gender, or behavior? And shouldn’t we be demanding access to rapid diagnosis and effective treatment if we happen to be unfortunate enough to just breathe in the wrong place at the wrong time?

Jennifer Hughes

Part of the reason that I became a doctor was to affect the lives of individual people, hopefully lots of individual people. Siyabulela’s cure makes me happy to be a doctor, but the looks on the faces of “the others,” who started, but didn’t finish their treatment journey, when they realized there really was nothing more I could offer them sometimes make me wish I had become a water engineer, or a city planner, or a schoolteacher. How insignificant is the impact of doctors and nurses who have nothing to offer patients, but a 20% chance (at best) to live? But I have been told that we should consider ourselves lucky working with DR-TB patients in South Africa, specifically in Khayelitsha. We have, at least in theory, easy access and enough resources with the capacity to screen, diagnose, and treat the majority of suspected prevalent TB and DR-TB cases. Many other areas of the world don’t even have access to a diagnostic laboratory test, never mind drugs to treat the disease. Once patients have been diagnosed with DR-TB in South Africa, most of the WHO-recommended treatment options are available to treat them. And for patients with pre-XDR and XDR-TB, there are plenty of stakeholders who are at least interested in helping them access the best treatment available in the world in order to offer them the best chance of cure. And yet still, despite all these “luxuries,” treatment outcomes in South Africa remain as poor as everywhere else: <50% treatment success and at least 30% default rate.

We need better treatment regimens. Treatment that actually works. Treatment that people can actually swallow and tolerate without fear of losing some of their bodily functions. Treatment that health departments can actually afford to provide to the hundreds and thousands of people who need it. And we need systems and resources to ensure access to rapid diagnostics, which are and should be available, to quickly identify those in need of better treatment regimens. These systems should ensure that treatment reaches all those diagnosed, and not only the lucky few who happen to be in the right place at the right time.

You can help us send a message to world health decision makers by signing MSF’s “Test Me, Treat Me” DR-TB Manifesto—a petition asking for universal access to DR-TB testing and treatment, better treatment regimens, and adequate funding for these programmes.

*Siyabulela Qwaka gave consent for his name and case to be discussed and has approved the piece.

Goodman Makhanda was born and raised in the Eastern Cape province of South Africa and moved to Khayelitsha to find a job. He now works for a clothing retailer in Cape Town. After being diagnosed with XDR-TB (his first TB diagnosis) last year, he has been a strong advocate for raising local awareness of the disease and highlighting the challenges faced by health care workers and patients in their struggle to access better treatment.

Jennifer Hughes is a medical officer working for MSF in Khayelitsha, in collaboration with Department of Health and local stakeholders, to address the epidemic of drug-resistant tuberculosis. She trained in the UK, but worked in the Eastern Cape of South Africa for two years before joining the Khayelitsha project four years ago.