The land cruiser stops at the end of a narrow country lane. This is as far as it can go, from here we will walk the final kilometre on foot. We trudge through the snow along the bank of a frozen canal and after some ten minutes reach the door of a simple single storey house. Together with me is a local ministry of health doctor, an MSF adherence support counsellor and my medical liaison officer (who will provide translation). We knock on the door and after being invited in, remove our shoes and enter. We have come to see a patient and inform him of his TB diagnosis.
It’s taken a lot of effort and we have come a long way to see Ernazor*, a full 100km from Nukus, the capital of the autonomous region of Karakalpakstan in Uzbekistan. But the importance of us coming here is clearly evident once we step inside. Crowded together in a small room are the patient, his wife and their young granddaughter. It’s cold outside and the family try to keep warm in this small dark, poorly ventilated room which is heated by an open stove. This is almost the perfect environment for TB transmission.
Ernazor is 58, but looks much older. He has a haggard appearance, is short of breath on the slightest exertion and his feet bear the hallmarks of peripheral vascular disease. His story is similar to many of the patients I meet; a cough for several months, initially thought to be due to a flu, then various treatments with different antibiotics that do not help, followed by a chest X-ray examination, until finally after being referred to the TB doctor, sputum is sent for laboratory diagnosis. Though Ernazor only submitted his sputum the day before our visit, the rapid molecular testing available in our lab means that we already have the result. We are here to inform him that he has multi drug resistant tuberculosis (MDR-TB).
Beside Ernazor are some medication packs – metformin for his diabetes and levofloxacin. Levofloxacin is an important drug for the treatment of MDR-TB but taken alone will quickly lead to the development of even more resistant strains of TB.
We spend some time talking to Ernazor about his symptoms and his diagnosis. He is not surprised to be told he has TB and he wants to start treatment. The treatment we can provide will combine a painful daily injection and begin with six oral medications. We need to combine these different medications to decrease the risk of his TB becoming resistant to any one of them. In 6 to 10 weeks when we have the full results of drug sensitivity testing, we may be able to tailor his drug regimen a bit. His treatment will take between 20 and 24 months, only with it will he have a chance of being cured of his TB.
Also once he starts treatment he will quickly become non-infectious thus decreasing the risk of his family members catching the disease. It is certain that this treatment will be difficult for him – coping with the painful injections and the side effects as well as learning to live with a diagnosis of TB along with all the difficulties it brings.
We leave to go see other patients who are receiving treatment from the local health clinic in the village. Our counsellor stays behind to spend some more time with Ernazor, discussing the diagnosis and treatment. The support and encouragement she can offer will be vital for him to be able to cope over the coming months.
One of the most significant things that I have learned in my last five months here is that treating TB, especially drug resistant TB, is not easy. It takes a lot of effort, and resources from a lot of people – nurses to deliver therapy six days a week, adherence support nurses and counsellors to help the patient through the difficulties of dealing with both the disease and the treatment, doctors to review the patients regularly and to manage the side effects of the medication, laboratory scientists to perform and interpret the monthly or bi-monthly tests for each patient. Not to mention drivers, logistics, pharmacy and infection control and all the other people without whom an effective TB treatment programme would be impossible.
World TB day should be a time to reflect on the difficult journey faced by patients with TB, like Ernazor. It should also be an opportunity to recognise the incredible efforts of all the people involved in the fight against the disease, both here in Karakalpakstan and all over the world. In many ways TB seems like a forgotten disaster, overshadowed by other global issues and health problems, but one and a half million people are estimated to have died from TB in 2014. Programmes like ours offer some chance for affected patients but the treatment we provide takes too long and has too many side effects.
For the first time in many years, some new medications for treating TB have recently started to become available, but the progress in making these ready to patients is too slow. Additionally more funding and research is needed to develop new drugs with fewer side effects and which shorter duration of treatment.
Patients like Ernazor and people who are working to treat TB all over the world deserve more attention and focus from the global community.
*Not his real name