November 6, 2007
This story was originally produced in April 2007.
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 enormous despair, he went home and stayed in bed for several days, waiting to die.
His condition quickly deteriorated, and the hospital started to suspect Armen was suffering from tuberculosis (TB) instead of cancer. His sputum test turned out positive, and, knowing that TB is a curable disease, this time he found comfort in his diagnosis. However, in spite of the 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 for second-line treatment offered at an inpatient unit of the TB hospital in Abovian, on the outskirts of Yerevan. This treatment, jointly offered by Doctors Without Borders/Médecins Sans Frontières (MSF) and the Ministry of Health, is the only MDR-TB care available in the country for patients like Armen.
Now, every morning, a doctor and nurses come to his 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 11:30 a.m. every day, my body becomes weak. My day is over."
Although the injections usually end after six to nine months, Armen still has 22 more months of treatment, several of which include hospitalization, before he will complete this regimen.
Offering more than just pills
For many patients in the joint MSF and Ministry of Health program 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.
"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 health care is not equally accessible to everyone.
Given this context, one of MSF's objectives in Armenia is to tailor care to meet the individual needs of patients. "When an MDR-TB patient is included in our program, 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 that 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 stigmatized 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 with an 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 have a market value of more than 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 growing 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 pulmonary TB has been estimated to infect ten to 20 people each year, and about ten 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 families, 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 11:30 a.m. at the inpatient 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 MDR-TB in two districts of Yerevan, Armenia, since September 2005.
*Patient's name has been changed
© 2013 Doctors Without Borders/Médecins Sans Frontières (MSF)