November 6, 2007
Needless to say, drug-resistant tuberculosis 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?' " —Robert Parker, MSF Head of Mission in Armenia
Doctors Without Borders/Médecins Sans Frontières (MSF) and the Ministry of Health opened Armenia's first and only treatment program for multi-drug resistant tuberculosis (MDR-TB) in the capital city Yerevan in September 2005, and the first MSF patient, N.L., has just 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, his TB bacilli had gradually developed resistance to medicine. 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 neighbors about his illness. Meanwhile, his condition went from bad to worse.
Up until two years ago, there was no medical treatment for such strains of TB in Armenia due to the complexity of the treatment, which takes at least two years, including several months of hospitalization. Not only are second-line drugs expensive, but they often trigger violent side effects. Moreover, cure rates are expected to be only 60 to 70 percent, even with the appropriate treatment.
Still, N.L. was one of the lucky few who were able to start treatment in October 2005.
Treatment at the special MDR-TB unit on 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. "Feelings 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, the doctor and nurse—encouraged him on different fronts and wherever possible."
During the initial phase of MDR-TB treatment, hospitalization 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 treatment. He was not yet cured, but he could now go home and continue ambulatory treatment at a polyclinic in Yerevan.
"One of the crucial moments in MDR-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 outweighs 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, MDR-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?'"
"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."
Lack of Effective Tools to Diagnose and Treat MDR-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 MDR-TB. Existing MDR-TB treatment has limited effectiveness, an unacceptable length and side effects. Plus, insufficient global production of second-line drugs makes its price unaffordable for the vast majority of patients in need.
MSF is currently treating 55 patients with MDR-TB in two districts of Yerevan, Armenia; 25 of them are hospitalized at the special treatment unit in Yerevan outskirts, and 30 are receiving ambulatory treatment at two polyclinics in Yerevan.
© 2013 Doctors Without Borders/Médecins Sans Frontières (MSF)