"I get terrible headaches, dizziness and loss of appetite. It is better now, but there were times in the past when I just wanted to die, I felt so low and depressed. Maybe it was the drugs, or maybe the length of treatment, but it all just seemed too much" Sarsenbai Menglibaev, a patient from the MSF project with his family
With 13% of all newly diagnosed tuberculosis patients infected with multi-drug-resistant strains according to a recent MSF study, the Central Asian republic of Uzbekistan has one of the highest rates of MDR-TB in the world. In 2003, in cooperation with the Ministry of Health, Médecins Sans Frontières started treatment of drug-resistant TB in Nukus and Chimbai, in the west of the country. The project includes a 75 bed hospital and an additional 30 beds in another facility as well as outpatient health centres where, once discharged from hospital, patients come each day to take their drugs.
57 year-old Ismail Kadyrov has recently completed eleven months of TB treatment. For eight of those months he was confined to a hospital bed. This was the second time Ismail had to be admitted to hospital. After his recovery last time round in hospital, he still couldn’t go home because the side-effects from the drugs used to treat him meant he could not walk. So he spent a month bed-ridden in a community in-patient ward. Then he discovered that his TB infection had reappeared and he had to return to the main hospital.
Ismail’s story of hospital confinement is typical. While regular TB can be treated in six to eight months and patients are usually not hospitalised, the resistant TB bacilli of MDR-TB require a much longer bombardment with toxic drugs that are also weaker than the first-line drugs. As a result, treatment lasts between 18 to 24 months, including between two to six months in hospital. While they are still infectious – a period that can stretch up to four months - patients are kept in isolation.
Some patients 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 from the hospital. 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 on their treatment. They then run the risk of developing even greater resistance to TB drugs and infecting those around them.
“The most difficult part was the side effects caused by the medicines. I had to vomit constantly and saw things that weren't there. Still I never considered stopping treatment. I had to live for my small daughter. It is hard to imagine how happy I am to be cured. Now I organise small trips and parties with my friends and family just as I used to do. I am also working again.” Z, a female patient at the MSF programme in Nukus
Once discharged from hospital, patients still need to come to health centres to take their drugs. They are only deemed to be cured when their sputum culture has repeatedly tested negative for TB. Many find the grind of this outpatient phase also very hard. Although MSF tries to ensure that patients can attend a health post near their home, many still have to travel up to an hour to get to the clinic each day. MSF also offers other support services to help patients and their families.
On top of facing MDR-TB, MSF is also encountering cases of extensively drug-resistant TB (XDR-TB) in Uzbekistan. This form of TB responds to virtually no treatment.
It is clear that health staff urgently need more tools to improve the treatment options for this debilitating, killer disease.