“Please don’t miss taking your medicines – the drugs will kill the TB bacteria in your lung. Otherwise the bacteria will grow and multiply and then destroy your entire lung, which will make you very sick. You should try to kill TB before it kills you. The TB that you have is a very strong one. So you have to cure this TB by taking lots of drugs daily and for a very long time.”
This is the most common advice that I give while trying to consult and encourage patients to continue their treatment for drug-resistant tuberculosis (DR-TB). But most often the replies are not encouraging:
“Have you ever taken the drugs yourself? How can I continue taking this medication when, after every time I take the medicine, I have a very strong stomach pain?”
“I am old and, when I cannot even eat my food properly, how can you expect me to take 23 drugs every day? Leave me alone. Please let me die in peace.”
“Your foreign medicines are very toxic. I’d rather take herbal medicines.”
My name is Mitchell Sangma and I come from a small state call Meghalaya in northeastern India. I have recently completed a one-year mission working with MSF as a TB doctor in the Karakalpakstan region of Uzbekistan.
“So where on earth is Uzbekistan?” That was the first thought that ran through my mind when I was told about the mission offer. I knew that it was a part of the former Soviet Union, but I had no clue about the country profile. I assumed that it was somewhere near Kazakhstan – a country I have heard of because of the cheesy movie Borat.
I soon found out that Uzbekistan is located in Central Asia and is doubly landlocked, far from any of the world’s oceans. About 80 percent of the population are ethnic Uzbeks, but there are also large populations of Russians, Koreans, Karakalpaks, Tajiks, Tatars and many others.
Karakalpakstan, where MSF is running a very ambitious TB project, is situated in the far west of Uzbekistan. The town of Nukus is the administrative capital, where MSF has its office, and where I was based for the first three months. At present, MSF is covering five districts in Karakalpakstan, running a comprehensive TB project together with the Ministry of Health (MoH). Later, I was based in a smaller satellite project, Takhtakupir, two hours from Nukus.
I first came to Karakalpakstan as a trainee in the freezing cold month of December (anyone in their right mind would have avoided that). At the end of my three-month training period, I extended my contract as a TB medical doctor for another nine months.
The first thing I heard about Takhtakupir from an expatriate colleague was that it was definitely not the end of the world – but you could see the end of the world from there. I soon found out why: the place is a vast, solitary, barren desert, and right in the middle of it all is a dull looking, isolated town where all the houses look the same. The worst part was that the town was totally devoid of people. To see people in the streets during the cold winter months was a rare sight.
Three months as a TB trainee
I was based in Nukus during my training period and at that time I concentrated on understanding the basic principles of DR-TB treatment. I was studying interesting cases and doing rounds with MoH TB doctors in state TB hospitals. I also accompanied experienced MSF doctors and counsellors during their rounds to peripheral clinics, and participated in the Counsellium.
The Counsellium is a place where group of doctors discuss DR-TB cases. The treatment of patients can be started or stopped only after getting approval in the Counsellium. The complicated cases are also discussed there, which makes it one of the important places for learning.
What I found out during my tenure as a trainee was that the management of the TB programme involved more than just prescribing drugs. I became familiar with the protocols of DR-TB treatment, the manual of side effects management and the concept of infection control, and realised the significance of data collection and epidemiological studies. At the same time, I familiarised myself with the principle of adherence counselling and with the algorithms of laboratory diagnoses. The various types of culture and drug sensitivity tests (DST) include a new diagnostic test, Hain, which can give results within 24 hours (in theory, of course). It was a tremendous learning experience in just a short time.
Nine months as a TB medical doctor
If I had thought that I had learned everything about TB in my training period, I was wrong. It soon dawned on me that it was easy to diagnose and start DR-TB treatment, but it was hard to keep the patients on treatment for a minimum of two years. average of 24 months. As a medical doctor, the biggest challenge was to introduce and implement guidelines based on modern approaches (such as WHO), which could be at times frustrating as our counterparts had to be convinced. But I soon realised that I was a small part of a bigger process, and therefore I focused on whatever I could contribute.
We organised lots of meetings and trainings to keep the MoH doctors updated on recent developments in TB. Looking back on all the things that we did has made me realise that our team made some progress in this regard.
In Karakalpakstan, it was disturbing to see such high rates of DR TB. Up until the end of my contract, we had more than 1,500 patients receiving Drug Resistant -TB treatment, not to mention the drug-sensitive TB cases. In our programme, we are now seeing that the proportion of DRTB cases amongst those classified as new cases is greater than 40% – – the highest in the world.
Karakalpakstan is a typical example of a system which is not functioning optimally. TB drugs are easily accessible and many people self prescribe. The system has separate TB doctors, who are responsible only for TB patients. However, they are based only in district centres and only see the patients who come to them. Hence, most of the GPs in the peripheries had no knowledge of TB, which was one of the reasons why there were lots of wrong diagnoses and treatment. The system isolates TB patients in TB hospitals, which has also contributed to driving the epidemic underground, because many of the patients refuse to come forward due to the fear of being isolated and far away from their homes.
However, we did succeed in lobbying for non-hospital treatment, and as of now we can start patients on treatment on an outpatient basis right from day one. The biggest achievement of our programme in Takhtakupir was that we were able to decentralise the TB management. Needless to say, trying to address all these different issues kept me busy when I became a medical team leader, responsible liaising with MoH counterparts in Takhtakupir.
Each day was interesting. The job involved lots of travelling to various health centres and managing different complicated clinical cases – most often because of the toxic effect of TB drugs. Besides, there were lots of daily challenges like lack of staff in the healt facilitieslack of medicines (e.g. TB medicines, for side effect management), defaulting patients, not to mention the ‘cotton season’, when all the doctors, nurses and patients disappeared to pick the cotton harvest. There was never a dull moment in the field.
Another highlight was when I led an assessment team to a very remote village near the border with Kazakhstan, driving through empty deserts for a 12-hour stretch during the peak summer season when the temperature was as high as 40 degrees centigrade. We did manage to screen the suspected patients, in spite of our car getting stuck in the sand five times on the way. The grand evening feast of goat head, which the villagers prepared for us, will always be a cherished part of my Uzbek mission.
The extremes of Karakalpakstan
Coming from the tropical hills of India, and studying in Madhya Pradesh, in central India, and in Australia, I had never had the chance to see snow. I remembered seeing snow for the first time in Uzbekistan. It was a blissful moment, with snowflakes floating all around me. However, it took me not more than a week to change my opinion on the snowy weather – I started dreading it when it started snowing every single day. The temperature gets as low as minus 35 degrees centigrade in winter, and I remember one night when I had to keep my hand inside the freezer to keep it warm, because the room temperature was colder than the freezer.
If the winter months were harsh, the summer months were equally torturing, with the temperature rising to 45 degrees centigrade plus. Sometimes I wondered, with so much cold in winter and heat in summer, how the TB bacteria can survive in Uzbekistan.
The best times, as you would expect, are during the seasons of spring and autumn. The scenery is magical, and suddenly the vast emptiness of the desert is filled with colourful flowers – pink, blue, violet – any colour you could name.
The fun side of the mission
The more the merrier held true for the MSF team in Uzbekistan. It was a big team of more than 20 international staff, with four expat houses in Nukus. Every Friday, the small Takhtakupir team would come to Nukus for the weekend. Coming from Takhtakupir, Nukus felt like a big city, with lots of restaurants and cafes. In Takhtakupir, there is only one restaurant and the menu was limited to only two items – chicken or fish.
The best thing was that every international staff member had a bike provided by MSF. I used to go biking or swimming or just hop around the many restaurants found in Nukus. Among my favourites were a pizza place call ’Sonata’ and a restaurant where we got good shashlik. We would also sometimes steal the office projector to watch movies.
There are many? clubs in Nukus, but they played a limited number of songs: ‘Waka waka, it’s time for Africa’ – a song by Shakira – was the favourite of the people, and was played every night. Old disco Hindi songs like ‘I am a disco dancer’ and ‘Juby juby juby’ were still a big hit in the clubs.
I also took the time there to take Russian classes. I was fortunate to be taught by a young, beautiful and talented teacher – but believe me, I won’t be wrong if I say it’s the hardest language in the world.
I went for many weekend trips to sleep in the desert, and visited many forts around Karakalpakstan. I also had the opportunity to visit the ancient cities of Khiva and Samarkand. A two-night trip to the Aral Sea with an awesome team was memorable. It was sad to see the dying sea, but it was definitely a sight worth seeing – maybe in another 10 years the sea will disappear completely.
End of mission
Looking back on the past year, my experiences have been overwhelming and immense. Certain things stand out:
I will always be impressed by the generosity and kindness of the Karakalpaks.
My expat colleagues – old and new. I had met different people from different parts of the world, who were like a family to me and who had become real good friends. I hope to bump into them somewhere again (if not, then I’ll find them on Facebook). I cannot thank each and every one enough – they are the best people ever!
The national staff, many of whom became my best support and true friends. I thank them for being awesome.
To sum up in one sentence: the wonderful memories of Uzbekistan will forever remain in my heart.
Next mission
To the land of gorillas and Uganda. To a TB/HIV project in Kitgum district, in the far north of the country. I am equally excited! Now, finally, the Shakira song that I heard all the time in Uzbekistan makes sense – “It’s time for Africa…”
Will keep you all posted after nine months. Till then, all the best, wherever you are! Dasvidania!!!
– Dr. Mitchell Sangma
