Médecins Sans Frontières (MSF) and the Armenian Ministry of Health opened Armenia's the country's first and only treatment programme for drug-resistant tuberculosis (DR-TB) in the capital Yerevan in September 2005, and the first MSF patient has completed treatment lasting almost two years.
"At first, I couldn't imagine the difficulties," says N.L. "I just wanted to be treated and return home to my family. But it was a long and slow process."
N.L. had been in and out of TB treatment for nearly 15 years. After years of failed attempts to comply with a strict and demanding treatment regimen, TB bacilli had gradually developed resistance to drugs. Out of fear that he might infect his wife and son, he lived apart from them. The fierce stigma associated with TB deterred him from telling his neighbours about his illness. Meanwhile, his condition went from bad to worse.
Up until two years ago, however, there was no medical treatment for such strains of TB in Armenia due to the complexity of treatment. Treatment takes at least two years including several months of hospitalisation. Second-line drugs are not only expensive but often trigger violent side effects. Moreover, cure rates are expected to be only 60-70% even with the appropriate treatment.
Still, N.L. was one of the lucky few who was able to start treatment in October 2005.
Treatment at the special DR-TB unit in the outskirts of Yerevan involves taking a combination of up to 20 pills every day, often accompanied by a painful injection in the morning.
"When I was three months into the hospital treatment, I began to suffer side effects," says N.L. "Feeling of weakness, dizziness, nausea, fatigue, mood changes, shortness of breath It was so intolerable that just looking at the drugs was enough to provoke nausea."
There were nearly 20 more months of treatment ahead, and already N.L. was in constant agony. His daily struggle started to overshadow any eventual benefit of treatment.
"N.L.'s main visitor was his son, who helped him a lot to cope with the sense of isolation at the hospital," says Robert Parker, MSF Head of Mission in Armenia. "Our team too, social workers, psychologists, doctor and nurse encouraged him on different fronts and wherever possible."
During the initial phase of DR-TB treatment, hospitalisation is necessary not only to closely monitor the patient's response to treatment, but also to prevent the spread of the disease to others until the infectious period is over.
N.L. was discharged from the hospital when his sputum smears became negative after seven months of hospitalisation. He was not yet cured, but could now go home, back to his family, and continue ambulatory treatment at a polyclinic in Yerevan.
"One of the crucial moments in DR-TB treatment is the transition from inpatient to ambulatory treatment," says Parker. "The patient is no longer infectious and goes back home to civilian life. But often, the pain and suffering of the side effects outweigh the distress induced by the illness itself."
N.L. was no exception. He started the ambulatory treatment with great difficulty. "I was happy to leave the hospital and reunite with my family. But on top of the side effects, going to the polyclinic every day for many more months, throughout the hot summer and harsh winter, was not easy. I thought I would never be able to get through this."
"At this point, we tried to involve his son in the treatment as much as possible," says Dr. Oleg Sheyanenko, an MSF doctor. "The son had been a tremendous emotional support, and N.L. did not want to disappoint him. He had a significant influence on the treatment, and most of the time N.L. was listening to him more than us."
While the MSF team continued to encourage and emphasise the importance of adherence to the treatment with the help of his son, the team also offered psychosocial support consisting of food parcels to ensure a balanced diet, transportation allowance for him to come to the polyclinic every day, firewood for the coldest months of winter, and psychological counselling when needed.
After months of strenuous effort on both sides, N.L. started to believe in the effectiveness and benefits of treatment. His attitude changed over time. "I very much wanted to finish my treatment so I continued to take drugs regularly. If you want to live, you have to finish the whole regimen."
Until the end of his treatment, N.L. visited the polyclinic every day and never missed a dose.
"N.L.'s treatment is over, but technically speaking he is only 'fully cured' if there is no relapse within five years," says Parker. "But this has definitely brought hope to other patients and to our team. For the first time in two years, our work in Armenia has yielded a visible result.
"Needless to say, DR-TB treatment imposes a considerable burden on the patient. But also it has been emotionally challenging and frustrating for our team, as we often felt guilty that we might be failing in our work. We are now able to respond honestly to the recurrent question from our patients: 'Does this treatment work? Has anyone ever been cured with this treatment?'"
Lack of effective tools to diagnose and treat DR-TB
Owing to the perception that TB is a disease of the past and a disease of the poor, international communities have not considered TB an enticing market worthy of research investments or development for the past 50 years. Meanwhile, TB is becoming increasingly difficult to treat due to the rapid spread of DR-TB.
Despite the DR-TB treatment's limited effectiveness and unacceptable length and side effects, insufficient global production of second-line drugs makes its price unaffordable for the vast majority of patients in need. In Armenia, where overall spending on health care remains among the lowest in former Soviet Union countries, MSF covers the entire cost of treatment, and second-line drugs alone cost over 9,000 euros per DR-TB patient.
MSF is currently treating 55 patients with poly-drug resistant TB (PDR-TB), multi-drug resistant TB (MDR-TB) or extensively drug-resistant TB (XDR-TB) in two districts of Yerevan, Armenia; 25 of them are hospitalised at the special treatment unit in Yerevan outskirts, and 30 are receiving ambulatory treatment at two polyclinics in Yerevan.
"Today, my treatment is considered complete. But what does this mean to me?" says N.L. "It means that I no longer have a fever or cough, and that I am able to freely interact with people. We must not lose hope, we must remain strong and patient and we will get to the end of treatment."