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In Karakalpakstan, a semi-autonomous region of Uzbekistan, Doctors Without Borders/Médecins Sans Frontières (MSF) has been running a project treating multidrug-resistant tuberculosis (MDR-TB) since 2003. MDR-TB is a debilitating disease and requires lengthy treatment with a complex combination of toxic drugs, which often have appalling side effects.

Chimbai, Uzbekistan: Ramuza has had 10 children, 6 of whom are alive. Some are working in Kazhakstan, others live locally. Photo © Donald Weber/Atlas Press

Nukus, a town of 300,000 people, and the capital of Karakalpakstan, is the focal point of MSF's MDR-TB project. Living conditions in Nukus and the surrounding area are very hard, with existing problems compounded by the collapse of the Soviet Union and the disintegration of the fishing-based economy after the shrinking of the Aral Sea. The white, dusty, salty earth and harsh climate cannot sustain many crops, and unemployment is high. The local health infrastructure has also suffered. In such conditions, diseases like TB flourish.

"Karakalpakstan is a hot spot for TB in Uzbekistan," explains Thierry Coppens, the MSF head of mission. "In 1998 MSF began to work in this region treating regular TB. After some years, treatment outcomes were not as good as we had hoped. An MSF study revealed what we had suspected, many of our patients had multi-drug resistant TB — 13 percent of new patients and 40 percent- of current patients in treatment. It was a shockingly high rate of prevalence".

The growing challenge of drug-resistant TB

Nukus, Uzbekistan: Sputum has to be handled in carefully controlled conditions, as it is still contagious. Photo © Donald Weber/Atlas Press

In response to this data, MSF, jointly with the Ministry of Health (MOH), decided to set up a project to treat MDR-TB in Nukus and the surrounding Chimbay region. The project includes a sophisticated reference laboratory for diagnostics; a 75-bed hospital; an additional 30 beds in another facility; 10 beds in the community for non-contagious patients; and 10 or more outpatient health centres where, once they are discharged from hospital, patients come each day to take their drugs. Over 100 outpatients attend these facilities each day.

"The commitment of the MOH to this project has been crucial," says Coppens. "They are clear that MDR-TB is a real problem in this country, and are very keen to work with us to set up a clear and effective system of treatment."

While regular TB can be treated in six to eight months, the resistant TB bacilli of MDR-TB require a much longer treatment with toxic drugs. Treatment lasts from 18 to 24 months, including between 2 to 6 months in hospital. Some patients have an even harder time, like 57-year-old Ismail Kadyrov, who has been on treatment for 11 months, 8 of which were in the hospital.

Last year, even though he was no longer contagious, Ismail was unable to go home because he suffered from drug side-effects which meant he could not walk. He spent a month bed-ridden in the community inpatient ward, only to discover that his TB infection had re-appeared. He went back to hospital. Now he is in the community ward for a second time, and trying to maintain an upbeat mood.

"I am hoping that I will walk with a stick soon, but I know I need to be patient. I want to be cured so much. I left home on foot and I am determined to return on foot."

Most patients suffer from a raft of unpleasant side effects caused by these noxious drugs, many of which have been used for the treatment of TB since the 1950s. They range from vomiting, nausea, dizziness, blinding headaches, joint pain, tiredness, movement problems, anxiety, and depression to serious psychosis.

As Jessica Adam, the MSF doctor with the project explains, "Drug resistant TB is diagnosed when the two best drugs we have for treating regular TB fail. We then have to use drugs which are older, less powerful and more toxic. We juggle a combination of 5-6 drugs for treatment, after establishing which drugs patients are resistant to. A patient may take as many as 25 pills a day, and also have to swallow para-aminosalicylic acid granules with juice.

Many patients describe the excruciating nature of these side effects. Fifty-year-old Yakubpai Urazbaev suffers from, "terrible headaches. They start after I take my drugs in the morning, even though I eat porridge to try and line my stomach as a sort of foundation. The pain continues all day, only subsiding by the next morning. The worst thing then is that I have to begin it all over again."

Nukus, Uzbekistan: Yakubpai suffers from splitting headaches, which keep him awake at night. Nonetheless, he keeps going. "There are people worse of than us in the world," he says "We are in a good hospital here. I will keep going, I can bear it. I don't want to die." Photo © Donald Weber/Atlas Press

Yakubpai shares a room with Parahat Shamshetov, who contracted TB in prison, where the only drugs available were those he bought himself. He tries to stay positive, but misses his family. "On Tuesdays," he says, "all of us get excited when the MSF bus brings our visitors to the hospital. My wife and sisters come, but I miss my garden."

Many have been treated for TB several times in the past, and realize that their poor adherence to past treatment was the reason that their TB mutated into a resistant form. Others have been newly infected with a resistant strain of the disease, often from family members.

There are some patients who simply cannot cope with their treatment or the length of their admission. Others start to feel better and decide to stop, or have pressure put on them by relatives to come home. Although the project tries to be flexible, and allows people to go home temporarily if their treatment is progressing, some patients don't return and "default."

About 25 percent of the patients in the MSF program have severe mental health-related side effects, according to MSF psychologist Leo Kröll, and the project has recently hired a local psychiatrist. As well as providing one-to-one support and counseling ,the health education team works with patient families to explain the treatment and progress of the disease. It also follows up those who default or interrupt treatment, and those who, sadly, cannot be treated.

As, Mukaddas Yakubova, the health education coordinator explains, "Educating people about MDR-TB and its treatment is a crucial part of adherence. We often manage to convince people who have stopped taking their pills to return to the program. And we try also to reduce the stigma in the community by raising awareness among family members and the public about what TB is and the fact that it can be cured."

Nukus, Uzbekistan: Kairat finds it very hard to keep his drugs down. "I see the 20 pills I have to take each time, and I just want to vomit. I've tried taking them with water, yogurt, but nothing helps. It would make a real difference if they could reduce the number of pills to 3 or 4, then it wouldn't be so bad." Photo © Donald Weber/Atlas Press

"The doctors here are very supportive," says 38-year-old Dilbankhan Mambetkarimova, sitting next to her 17-year-old niece who is also being treated. "When this hospital first started, there was lots of gossip in the community about how it was like a prison, and the treatment was bad. But now people have started to see patients being cured, and understand that the treatment is good, and they regret not coming here earlier."

Once discharged from hospital, patients still need to come to health centers to take their drugs. They are only deemed to be cured when their sputum culture has tested negative for TB on multiple occasions during and the end of the therapy. Many find the grind of this outpatient phase very hard. Although MSF tries to ensure that patients can attend a health post near their home to take treatment, many still have to travel up to one hour to get to the clinic each day. As 27-year-old Rustem Zarlikov, who is in his 21st month of treatment, explains, "Before the treatment I worked in trade between here and Tashkent. But since 2003, I've not been able to do anything, and my brothers have to support me."

After three years of operation, the MSF program still faces many challenges. The laboratory requires expensive and complicated equipment. Recently, a new machine in the laboratory has enabled the team to test a process that will enable them to diagnose TB much faster. It currently takes 4-6 weeks before it is possible to culture a patient's sputum to check if it contains active TB; the new machine should mean the bacterial culture can be grown in one week.

But by identifying patients faster, MSF faces a new challenge — one of capacity. Three hundred and fifty patients have been treated since the start of the program in 2003, and there is now a waiting list of 100. The project is now expanding its bed numbers, and by the end of 2007 the team hopes to have enrolled 700 patients.

Since the treatment is so long, it is only recently that the first results have emerged from the Nukus project. Of the first cohort of 87 patients, 62 percent can be declared as successfully treated, 15 percent died, and 15 percent defaulted (chose to leave the program) and 8 percent failed (the treatment did not work, or for medical reasons could not be continued). Compared to regular TB programs, which aim for success rates worldwide of about 85 percent, it is clear that health staff desperately, urgently need more tools to improve the treatment options for this debilitating, killer disease.