A Hospital in the Outskirts of the Town. MDR-TB treatment in Karakalpakstan.

"I came here to get cured or to leave forever the hope for getting cured. This hospital is my last resort," a patient in the Nukus MDR-TB hospital.

Irina (47) has had tuberculosis (TB) for eight years. She completed the regular DOTS course and to maintain her health she ate dog's fat – a popular local remedy, which is widely believed to heal TB. One year after, she had a relapse. Another DOTS course and another relapse followed. The next course after that Irina failed to complete her treatment.  Since 2004, when she once again felt bad, her life has turned into a succession of visits to TB hospitals, with very short intermissions. "I am tired of being on treatment all the time", Irina says. "The same drugs that I take every year simply don't help me."

Eventually Irina became a patient in the TB hospital No.2, located in the outskirts of the town of Nukus, the regional center of Karakalpakstan, an autonomous republic within Uzbekistan. Since 2003, MSF alongside the local Ministry of Health (MoH) has conducted treatment there for drug resistant TB patients. 

Karakalpakstan is one of the most economically undeveloped regions of the country, and the decades-old ecological disaster of the Aral Sea makes matters worse. The prevalence of multi-drug resistant TB in the region is one of the highest in the world – estimated at 13 percent among the new cases of TB and 40 percent of re-treatment cases.

Patients are defined as suffering from multi drug-resistant TB (MDR TB) when they are resistant to Rifampicin and/or Isoniazid, the two most powerful first-line TB drugs. Drug resistance may occur when the treatment for standard TB that is sensitive to drugs is interrupted or poorly administered. It is also possible though to get infected directly with MDR-TB. "In Karakalpakstan, there is a big pool of MDR-TB patients who are probably transmitting this resistant strain directly to their families and their contacts", says Stobdan Kalon, Medical Coordinator of the MSF program in Uzbekistan.

Besides the 75-bed MDR-TB hospital the MSF program also maintains an additional 40 beds in the main MoH tuberculosis hospital in Nukus, for poly-drug resistant TB and less severe cases of MDR-TB. A reference bacteriological laboratory, set up by MSF, performs drug sensitivity tests in order to establish what drugs the patient is resistant to and allowing correct prescription. Since the start of the program, over 600 patients have received treatment for MDR-TB.

Long and weary treatment of MDR-TB

Gulbakhar, 30, has a very severe case of TB drug resistance. She has been on treatment for too long, and as a psychological side effect of that, the swallowing reflex fails her every time she has to take another portion of noxious drugs. Sometimes a nurse has to spend up to 50 minutes with her, before she can force herself to take the medication. The nurse has to help her take the drugs by ordering her to "swallow!" in a loud compelling voice. Even so, she often throws up her medicines and it is hard to repeat the procedure.

The treatment of MDR-TB is often accompanied by severe side effects, and can take up to 24 months. Patients take a daily combination of 15 to 25 medicines that include second-line TB drugs and other drugs that are used for treating MDR-TB. Everyday medication intake becomes an ordeal.

Murat is 18 years old and he spent his last four years in different TB wards. The boy has splitting headaches and deafness as a result of the side effects of the drugs. He is very nervous because of his situation; he refuses to take the drugs and vents his aggression on nurses. His mother has died of TB and his sister is sick, too. MSF mental health counselors are working closely with such patients as Gulbakhar and Murat to help them overcome their psychological problems and adhere to the treatment.

Inappropriate use of TB drugs contributes to drug resistance

Gulnaz, 26, is an example of how drug resistance may develop because the treatment was improperly administered. Two and a half years ago she was discharged, after five months of DOTS, from a TB hospital in her home town of Chimbai, 60 km away from Nukus. She started feeling better, and she has not continued the ambulatory treatment phase. In the following 10 months, she felt much worse than before and had to be hospitalized again, but the drugs won't work anymore. In early 2007 she was admitted to the MDR-TB hospital in Nukus.

"Every day for the first four months here, after I took the drugs I felt so depressed. I often blanked out and couldn't remember where I was, whether I was still in the hospital or not." After 12 months on treatment, she is preoccupied that her other organs, such as liver, have deteriorated because of the toxic drugs.

"Sometimes people get admitted into the MDR-TB hospital with serious complications, and at a very late stage. This is really scary", says Janette Olsson, an MSF Nurse in the Nukus project.

Raushan, 51, lost 40 kilograms during her lengthy disease and now weighs a mere 43 kilograms. Extremely thin and exhausted, she cannot move her legs, has problems with hearing and is shivering from cold despite a thick woolen coat and a blanket.

She was diagnosed with TB in the autumn of 2005 and was receiving DOTS treatment for 10 months, but it didn't help her. MDR-TB was detected in 2006, but the special treatment was delayed. She is now in a very grave state and resistant to all first-line drugs and to some of the most important second-line drugs.

Second-line drugs available without prescription

Irina thought that the drugs she was taking against standard TB didn't help her. Once she saw that her fellow patient in the hospital was prescribed a different drug. She read the instructions in the box and went to a drugstore, where she easily bought the antibiotics without any prescription. The drug was expensive for her, but she thought it was even a better sign of its high quality. Irina self-medicated with Ofloxacin, which belongs to the fluoroquinolone group and is the key drug for treating MDR-TB.

Indiscriminate use of second-line anti-TB drugs is another problem, which adds to the existing burden of drug resistance. These medicines are often prescribed unofficially, or bought by the patients themselves for treating TB and other infections. Because of the overwhelming stigma, many people don't want others to know about their TB, thus many buy the drugs over the counter. "It is disturbing to see that up to 40 percent of the patients entering the MSF program have already had exposure to the second-line TB drugs," – says the Medical Coordinator Stobdan Kalon. MSF is strongly urging the Ministry of Health to strengthen control over these drugs.

Lack of knowledge propels TB-related stigma

General public knowledge about TB is often a tangle of superstitions and misconceptions. The infection control is generally poor, and many TB patients infect their families. Stigma related to tuberculosis is high, and the social implications are enormous. "People believe that TB is inherited and that there are "TB families", - says Stobdan Kalon. "If a father was sick with TB, his daughter will have problems getting married". A TB patient, who has completed treatment, often has difficulties finding a job.

To change this, MSF in collaboration with the MoH has launched a massive information campaign. During an open air concert to kick off the campaign, the local pop stars have delivered TB awareness messages from the stage to an audience of about 4,000. There are colourful spots on the local TV, billboards on the streets of Nukus; and a puppet show in the local schools. A mobile exhibition will be going about in Nukus and in three adjacent rural districts for six months.

Many TB patients fear the MDR-TB hospital because it is difficult for them to understand the technicalities of the treatment. "At first I didn't want to go there", says Irina. "The treatment is too long and I was told that they give you drugs, which are driving you mad."

"Why is the treatment so long? Cannot we just take a rest for a couple of weeks? Even in the war there is a lunch break!" – Several young patients in the corridor of the hospital ask a lot of questions to the MSF Nurse Jeanette Olsson. Jeanette explains that a break in the treatment can lead to a further aggravation of the drug resistance. Health education is an important component of the work of the program.

A dream of Irina

Eventually, in early 2008, Irina agreed to be transferred to the MDR-TB ward. "You will laugh at me, but I saw this place in my dream even before I got here. On the night when I gave the sputum test, which proved my drug resistance, I was dreaming of a view from the window that I had never seen before. For some reason, I remembered the dream. It was late at night when I was brought to this hospital. When I opened my eyes in the morning I immediately recognized the landscape from my dream – the huge tree with V-shaped branches and the lamp post. But the tree in my dream was covered with many green leaves. I came here to get cured or to leave forever the hope for getting cured. This hospital is my last resort."

Please note: In this article, names of patients have been changed for confidentiality.

DOTS (Directly Observed Treatment, short course)

A TB treatment strategy during which a patient is hospitalized for the period when he or she is infectious and after that continues taking anti-TB drugs in an out-patient facility, under the direct supervision of the medical staff. The treatment should last for 6-8 months (WHO, 1995)