"We know some undetected people are living with their family, using public transport, and going to public places. They could be sitting next to you on a bus and talking to you," says Dr. Said. "We don't have any kind of tools to calculate the infection rate here, but it could be very high." Long and arduous treatment for multi-drug resistant tuberculosis Armen Poghossyan*, 49, developed a frequent cough last summer, but thought it was because of cigarette smoking. The coughs persisted and he started to have night sweats. His body became increasingly frail. After undergoing a number of examinations and tests at the nearby hospital, Armen was diagnosed with cancer. "I thought I was going to die", he recalls. In his enormous despair, he went home and stayed in bed for several days, waiting to die. His condition quickly deteriorated. By then, the hospital had started to suspect Armen was suffering from tuberculosis (TB) instead. His sputum test tuned out positive, and this time he found comfort in his diagnosis, knowing that TB is a curable disease. However, in spite of anti-TB drugs he took for two months in the hospital and three months subsequently at home, his sputum results remained positive on three consecutive tests. He soon discovered he was infected with multi-drug resistant TB (MDR-TB) – a strain of TB that does not respond to standard TB treatment. Once again, Armen sank into despair. He was afraid of infecting his family. It was not until February 2007 that he was finally referred to second-line treatment offered at an inpatient unit of the TB hospital in Abovian on the outskirts of Yerevan. This treatment, jointly offered by Médecins Sans Frontières (MSF) and the Ministry of Health, is the only MDR-TB care available in the country for patients like Armen. For many patients in the joint MSF and Ministry of Health programme in Armenia, MDR-TB treatment is often a complex issue. Treatment takes up to 24 months, and the patient needs to be admitted to hospital for the first several months for close clinical supervision. Following discharge, they have to continue daily medication for another 18 to 21 months via ambulatory or home-based care. This long and constraining treatment leaves many patients with the dilemma of whether or not to quit work and leave home for several months. Every morning, a doctor and nurses come to Armen's room and give him an injection and 25 tablets of anti-TB drugs. These medicines give him intolerable nausea and headaches that often persist throughout the day. To counter these side- effects, he is prescribed five or more additional tablets. "In the morning, I do exercise and keep myself busy," says Armen. "But after taking my medication at around 11:30am every day, my body becomes weak. My day is over." On top of that, Armen has 22 more months, including several more months of hospitalisation, before he will complete this treatment regimen. Offering more than just pills "I could not have handled this treatment without my son's support," says Armen. "If you take a break from work for as long as six months, you can easily lose everything. I had built up my career from scratch, but now I have lost it all. Without my son, my family would have starved." The collapse of the Soviet Union dealt a crippling blow to the economy and public services of Armenia. Even today, after 16 years of independence, 43 percent of the population is living below the poverty line. Unemployment is high, and benefits have been unequally distributed between rich and poor. Given this context, one of MSF's objectives in Armenia is to tailor patient-centred care to meet the individual needs of patients. "When an MDR-TB patient is included in our programme, we assess the situation of the patient and family. What kind of income are they receiving? What are their needs?" says Petra Becker, Psychosocial Coordinator for MSF in Armenia. "But one of the most difficult parts is, although we are trying to meet our patients' needs, be it heating support, food parcels or transportation money, if they don't have any income, they can't live on that. We have limits to what we can provide, but explaining that to our patients is difficult." Becker and her psychosocial team consisting of two psychologists and three social workers also provide adherence and emotional support to patients at least two or three times a week to help them cope with the ups and downs of their illness and daily treatment. "TB is very much stigmatised here. TB patients are really the last group in society. Many of our patients are ashamed to have TB and wouldn't dare tell their family or friends about it. And having MDR-TB is worse," says Becker. "We are trying to create an atmosphere that is comfortable and accepting, to show them that they are being seen and listened to, and not to approach them like objects but as human beings."
Long and costly treatment, yet uncertain outcome
In addition to the enormous burden on the patients, MDR-TB treatment is extremely costly. MSF covers the entire cost of treatment, including second-line drugs which price at over 9,000 Euros per patient. But what is even more problematic about this treatment is that there is no guarantee that all patients will be cured. "Despite all of our efforts, only about 60 to 70 percent of our patients will probably be cured," says Dr. Ayub Said, Medical Coordinator for MSF in Armenia. "TB is the disease of poor people, so there is no benefit for the rich to invest in research and development for more effective diagnostics and treatment for TB. We have been using the same tools and drugs for more than 20 years, and in the meantime, the rate of drug-resistance is going very high. "And now, we have extensively drug-resistant TB (XDR-TB)," continues Dr. Said. "We have a few patients with XDR-TB and we have no drugs to cure them. After such long and terrible treatment, we have to tell them that their treatment has failed and that they are going to die. It is a real frustration." TB is an infectious disease that spreads through the air. Each person with undiagnosed and untreated active TB has been estimated to infect 10 to 20 people each year, and about 10 percent of infected people will develop the disease and become contagious at some point in their lives. "We know some undetected people are living with their family, using public transport, and going to public places. They could be sitting next to you on a bus and talking to you," says Dr. Said. "We don't have any kind of tools to calculate the infection rate here, but it could be very high." Although some drugs and diagnostics are under development, recent analysis conducted by MSF indicates that, at present, none of them is promising to curb this fast spreading and increasingly drug-resistant disease. "I am dreaming that very soon there will be awareness in the international community, and progress in research and development for newer diagnostics and short-term and effective drugs for TB," says Dr. Said. "It is already late, but we can still say it's not too late." It is almost 11:30am at the in-patient unit in Abovian. While waiting for the doctor and nurses to come around, Armen mumbles, "I saw death once [when I was misdiagnosed with cancer], all I can do now is to continue this treatment and try to make the best of my life. I have no other option. I need to struggle in order to defeat this disease." MSF has been treating patients with drug-resistant TB in two districts of Yerevan, Armenia since September 2005. As of April 2007, 47 patients with drug-resistant TB (poly-drug resistant and multi-drug resistant TB) were receiving treatment, among them 24 patients were receiving hospitalised treatment and 23 were followed via ambulatory or home-based care. *Patient's name has been changed