TB in Uzbekistan

I know how movie stars feel. Okay, wait, let me rephrase that since I still have roommates and we all share the same shower. I know what it feels like when people I don’t know want to take a picture with me. A billion Indians on the planet, and I’m the only one in Nukus. My colleagues from Kenya have it worse. I don’t mind the kids who call out to me with the few English phrases they know (apparently the same as in rural Africa – “Hello, how are you? What is your name?”), but when I walk past people who stare at me, then snicker and laugh, it just conjures up repressed feelings from high school.

My high school reunion is this summer, but I’ll miss it. Two decades have gone by since I decided I was going to save the world. It took me that long to realize my mistaken career choice. I went on my first mission with MSF for mostly selfish reasons – wanting to change the world, wanting the world to change me. It took a year to fully understand that the needs in the field are beyond one person’s good intentions. I came on this second mission because I truly believed I could be useful.

I’ve spent the last 3 months trying to help doctors, nurses and managers use the data we collect to monitor the program more closely; identify problems quicker, see how well we’re doing, plan for the future. If they don’t use the data my team spends so much time meticulously collecting, cleaning, and analyzing, I may not be so useful after all. But again, it’s not really about me.
I’m the supervisor of a team of three, three very dedicated young women who have been doing this job for years before I came along. Most of MSF are national staff, people who are from the country in which MSF works. Some national staff become expatriates themselves and continue working for MSF in other countries. I’m always impressed by the mix of people sitting around the lunch tables.

Lunch is one big family meal. We have a dining room here in the office, and at 1pm, our cooks call out “Lunch!” and everyone comes running. It’s nice to see everyone together, once a day. Sometimes announcements are made and a translator has to stand up and translate for the seven of us who don’t speak Russian. Seven of us, out of nearly 70. All MSF missions have national staff who vastly outnumber expats – it’s how MSF works.

I find it curious that our national staff may not know the international reputation of MSF. To them working for MSF is a job – a chance to work for an international organization that often has higher employee standards than other opportunities in the country. But many may not know about refugee camps, or therapeutic feeding centers, or measles vaccine campaigns that MSF runs. Somehow I want to inspire them, to add another layer of pride to their work. Or maybe that’s just what I need.

I arrived in February, but MSF-USA still managed to send a Christmas gift to the field for me. In addition to the t-shirt, calendar, CD and other goodies, there were stacks of holiday cards from individual donors – people who give money to MSF so we can keep doing what we’re doing. I keep these on my desk as easy access on those days when I’m feeling useless. My favorite one says, “You’ve inspired me to do all I can to help others and to never accept the world as it is. To change it. Thank you so much.”

Perhaps I haven’t changed much in 20 years.

It’s the beginning of a month and I’m doing the monthly report, counting how many patients came in, left, and are still on treatment. Our cohort grows more each month as more people are admitted than discharged. Treatment for TB takes 6 months, and if there’s drug resistance, that can last up to 2 years. The first few months are the hardest for patients, and they are usually hospitalized.

I got an email from a friend telling me about the Fully Sick Rapper (check him out on YouTube). He’s an Australian who was infected with MDRTB and is now quarantined in a hospital room in Sydney. Apparently he’s been there since mid-January. After watching as much TV and as many DVDs, or reading as many books and magazines as he could handle, the inevitable happened – boredom. Instead of feeling sorry for himself, he started making rap videos and posting them online. I’ve heard that his videos have “gone viral” – that over half a million people have watched him dance around in his hospital gown rapping about being on DOT, directly observed therapy. And people care. He’s probably done more for raising awareness of TB than all of us in public health combined. I’d really like to thank him, because any attention to this situation is overdue.

Last month MSF released a report about why they closed their mission in Turkmenistan in 2009. They even had press conferences in Moscow and Berlin. Apparently the country’s official numbers regarding the health of its people doesn’t match what MSF itself witnessed. People with an infectious disease may be turned away from receiving treatment because the “quota” for that certain disease in the hospital they had turned to might have already been reached. MSF is concerned about hazardous medical practices such as the transfusion of unscreened blood products and about the lack of access to diagnosis and treatment for patients with multi drug resistant tuberculosis. But I didn’t see any of that in the news – did you?

As I prepare this month’s monitoring reports, information that helps keep track of our program’s progress, I keep an eye on the bigger picture. Two billion people are estimated to be infected with TB, that’s a third of the planet. Only about 10% will develop the disease in their lifetime, but still, about 2 million die from it every year. I counted five last month here in Nukus.

The problem with having a housekeeper is that sometimes she does your laundry and you can’t find it. Two other women and I are planning to go to a sauna in a local hotel here and I need both of my towels, but of course I can only find one of them.

This morning our team, about half a dozen of us, ran 6 kilometers into the desert.

The idea: run 6 kilometers to the salty lake for the “Run for water” campaign.

The plan: organize a driver the day before to plot the course.

The problem: it’s a different driver on the day of the run.

There were 3 people running and 4 people on bicycles. I envisioned the car and bikes arriving at the finish before the runners, but when the driver took a right turn when he was supposed to go straight, the bikes followed and we runners kept going straight (it would have been more painful for us to backtrack). I couldn’t keep up with the lead runner, so when he went off-road and into the desert that surrounds the salty lake, I followed and hoped the driver and bikes would find their own way. Women and children do this 6k walk, daily in some places, just to get clean water. People stared at us as we ran. Only foreigners do such things for fun. Fortunately we all ended up in the same place, on the “beach,” eating biscuits and tangerines and drinking water and juice in the shade of the MSF land cruiser. The bicyclers went back by bike, but we runners were happy to hop in the MSF truck for the return. On the way back we drove past the landfill, where everyone dumps their garbage. It was strewn with plastic and cardboard and refuse for miles, and of course I had to take a picture. Only foreigners take pictures of garbage. Still, the overall experience was a good reminder of the scarcity of water, especially since I can come home and turn on the shower.

The UN Secretary General was in Nukus yesterday. That’s why there were so many police, flags, and fresh paint on the road to the bazaar. He came to see the Aral Sea, or what’s left of it. After seeing the graveyard of ships, the Secretary General was “shocked” and has urged “all the leaders…to sit down together and try to find the solutions.” How does one say “too late” in UN-speak? The Aral Sea is a complicated situation. The Amu Darya River used to flow into it, but this river has been diverted to irrigate cotton fields, a major source of revenue for the country. Meanwhile the environmental ramifications of this ecological disaster include the highest rates of respiratory infections in the region. MSF was also shocked by this environmental disaster, and came here to assist in improving the health of people who have been affected. Now, over 10 years later, our organization is focused on treating tuberculosis.

Would it have been helpful for the Secretary General to walk the last 10 years with MSF and end up at one of the TB hospitals in Nukus? We could have told him about the problems of paying for food for patients who are hospitalized for months before they are discharged to ambulatory care. We could have discussed the difficulties in rebuilding facilities for adequate infection control. We could have engaged in conversation about ensuring an uninterrupted drug supply, because though we work hard to convince patients to take a handful of drugs with difficult side effects daily, sometimes those drugs aren’t there. But I know, it’s hard to understand these things when you are only in Nukus for a day, and have spent so much time in a helicopter flying over the “largest manmade environmental disaster in the world” (UN words, not mine). Perhaps the flying visit of the Secretary General will bring a little more attention to the region; perhaps a few more people will read about it in an article on the international page and be shocked as well, perhaps people will take a moment from their busy lives and wonder what has been done to help these people who are less fortunate than them. I believe 90% of the world is good, and is willing to help. But it takes time to really understand the context of a community in need.

I’ve been in Nukus for nearly 2 months now, and I still feel like a foreigner. I started Russian classes, and have learned the alphabet. I can now read Russian, though I don’t know what the words mean. I have learned that there’s a cell phone service called “Beeline,” which means their ads in black and yellow stripes now makes sense to me. I feel like a filter has been lifted, that all those Greek-looking letters are no longer a mystery, but instead a puzzle to be figured out. I’m hoping to speak soon, it would clear up some of the misunderstandings I have. One weekend I went to a colleague’s house for a late lunch, she’s an assistant to one of our doctors and greets me each morning with stories of her son or cooking Indian food. Her husband was happy to host and kept pouring vodka in my glass, and I kept drinking. I was wondering when/if he would stop pouring and he was wondering when/if I would stop drinking. By the time the bottle was empty, we had figured out our misunderstanding. Sometimes stumbling through can be more fun. Last weekend I went to a couple of weddings. There were some ceremonial gestures, but weddings seem to be mostly about food, drink and dancing, a universal concept. Although the differences in cultures are often intriguing, the similarities are comforting.

Sunday was the first day of spring, and here in Nukus it’s celebrated as the
new year. I’m looking forward to seeing blossoms on trees, green instead of
grey concrete. Sometimes this place reminds me too much of a Dostoevsky
novel – not that I’ve ever read one, but with the old Russian cars, grey
overcast days, and sharp looking police officers in green uniforms with red
trim, I have a good idea. I’m settling into my work too.

Part of my job is to increase the use of data, the other half is to decrease
the burden of data collected. We have 413 patients currently on therapy.
Since 2003 we have enrolled just over 1200 patients. Though roughly 2/3 of
our patients had successful outcomes, nearly a quarter have defaulted, or
stopped taking their medication for over two months. These data, along with
others, help doctors, nurses and managers monitor the program, see how we
are doing. It’s my job to put these statistics together, which means sitting
in front of a computer for most of the day, but sometimes I get out.
Last week we presented our monthly statistics at the weekly doctors
meetings. The entire conversation, questions and answers, were in Russian,
but I had a translator. My technique is to lean into her so I can hear what
she says while still look at the person speaking. Though my nonverbal
response are not on cue, like a broadcast with a 3-second delay, I try to
stay as engaged as possible. It was the first time these data were
presented. The previous epidemiologist managed to get the reports translated
to Russian. I’m not sure what happened before that. I have to keep reminding
myself it’s a long process, that patience can be as valuable in the field as
any other skill.

Today is World TB Day, I’m not sure what I’ll do, though there is a long
string of data requests sitting on my desk. It would be nice to attend one
of the celebrations planned at one of the hospitals. Statistics are a poor
proxy for real people.

I live in Nukus. It’s a city of ~300,000 people in Karakalpakstan, a semi-autonomous region of Uzbekistan. When I told a friend I was coming here
for an MSF mission, he congratulated me. “Sounds like you just made up a
name, but I guess it exists.” It is somewhat of a forgotten corner of the
world, but just south of here the Silk Road ran from the Far East to Europe.
I’ve even seen camels on a farm near the TB hospital where MSF works. (I’ll
leave the reader to speculate why our TB hospital is so far away that a
camel farm is one of the closest neighbors.)

Where I come from, people have also forgotten about TB, though nearly a
third of the world is infected and about 2 million people die from it every
year. TB is curable, with 6 months of antibiotic therapy. The project MSF
runs here is a little more complicated as our patients have some form of
drug resistant TB. From a patient’s perspective, this means ~2months of
hospitalization, followed by nearly 2 years of antibiotic therapy which
consists of taking a hand full of pills every day. Oh and these drugs have
some nasty side effects, including being sick to your stomach. The side
effects can be so bad that just seeing the white coats of hospital personnel
can make patients nauseous.

I’m not sure why the rates of drug resistant TB are so much higher here, but
I’m sure having the antibiotics readily available in the bazaar doesn’t
help. Respiratory infections are generally higher here, most probably due to
the ecological disaster nearby (I suggest the reader google “Aral Sea”),
which brought MSF here over a decade ago.

Over 10 years of expats [international volonteers] coming and going, and some who have been here more than once. I wonder about the expats who lived here before me. As an expat, I find myself doing things I wouldn’t normally do at home. One evening I returned from the office and decided to heat up some leftovers. I took a bowl of lentils from the fridge and found dozens of ants that had drowned along the edge. “Damn!” was my first thought, “can’t waste food,” was my second. I trimmed the edges of the bowl with a spoon and heated up what remained. Still, I live in a comfortable house, with heat, electricity, and running water, most of the time. I put photos up on my wall in my bedroom and organized all my bottles of lotion on my dresser. I even tacked up a subway map of New York City. It’s beginning to feel like home.

Being on a mission with MSF is unlike other experiences. It’s uncomfortable. I’m not talking about living with strangers from different countries, or having to brush my teeth with bottled water. For the first month I am inadequate, even useless. Yet no one questions my competence and I’m supposed to be the expert in my field. I’m on my second mission, and it’s worse because this time I can’t hide behind the ignorance of not knowing any better. Then there’s the complication of trying to do my job in an unknown context. I’m a post-9/11 American in a Muslim post-Soviet country – a bit of a forbidden land. I have no family or friends and my housemates are quickly tested by my frustrations in the first few weeks. For some reason my friends back home think this sounds glamorous and exciting, but every day feels like a test of stamina, endurance.

I’m still in my first month, so I have to remember to pace myself – it’s a 6-month marathon. The acclimation phase is when you notice many differences and similarities. I had a cultural briefing when I first arrived in the field. Bread seems almost sacred, and I’m obliged to at least taste a round loaf if someone offers it. There is an informal tea ritual, poured into a cup and back into the pot three times to make sure it’s reached the right concentration, color. Only half a cup is poured, to designate respect, because the host would like to continue serving you. I had pictured a town of women in colorful oversized housecoats – Russian peasants, and indeed there are plenty of Babushkas with golden teeth and shapeless dresses. But all the young women wear skinny jeans, tall black boots with 3” heels, even in the snow. Many people travel to India for studies, and the Internet provides ready access to the world. I’m beginning to wonder if a place with no outside influence actually exists. Some differences are surprising. “We have two types of marriages, arranged and kidnapped.” I had the same quizzical look when I heard that the first time. My fellow expats have warned me with a wink, but I told them I’m too old to be eligible for either.

As the epidemiologist on the MDR-TB mission, I’m fortunate to get a bird’s eye perspective of MSF’s progress since they began this program in 2003. I’m also burdened with so much data that it’s a full time job piecing this picture together every month. MSF has been successful in bringing the latest diagnostic tools to the field to quickly identify patients and their most appropriate treatments. Now the challenge lies in handing over this program to the Ministry of Health. The task is not so easy as the patient population tends to be marginalized, the drug supply can be interrupted, and infection control may not be enough. But the team is dedicated. Staff, both national and expat, MSF and MOH, work late into the night, and sometimes weekends. I’ve watched doctors passionately urge patients to stay on treatment, and I’ve seen nurses compassionately hold the hands of patients trying to consume a handful of pills every day without vomiting. Even our drivers are on-call 24 hours, and there’s always a receptionist by the phone in case one of our non-Russian speaking expats like myself needs an interpreter. Good managers help, people who are incredible judges of character, and can find strengths in everyone on the team. These are essential criteria for managing a random collection of expats in the middle of an Uzbeki desert trying to work within a post Soviet system to change the way health care is managed for a vulnerable, marginalized population. Perhaps the greatest challenge is figuring out what can realistically be improved, and making small changes to move in that direction. I suppose working with people like this is the reward for all the inconveniences that come with mission life. I remind myself that being on a mission means trading in comfort for experience. Anyway, there’s plenty of comfort back home, and that’s not what I came here to find.