Text and photo by Sebastian Dall
How Armenia suffered from a tuberculosis epidemic, became the frontrunner of the former Soviet countries and still has
a long way to go.
Samvel Bleuan is sitting bent over with his black leather jacket, black trousers and black shoes in a naked room with two medicine cabinets up against the walls. Together with a couple of doctors and nurses, the decrepit room works as the medical clinic of the Nor Aresh neighborhood in the outskirts of Yerevan, Armenia. Looking at Samvel you wouldn’t know that he goes to the clinic in Nor Aresh two times every day to receive treatment for the tuberculosis he was diagnosed with in a prison 16 years ago.
“When the test came back positive I wanted to hang myself. There was this concept that tuberculosis was the end of everything. I was only thinking about death,” he says.
It wasn’t uncommon to think tuberculosis was untreatable back then. There was, and still is, a lot of misinformation and prejudice connected to the disease, and people did die at a much higher rate than today. But while more effective treatment and better diagnostics have halved the mortality rate globally since 1990, more people are diagnosed with drug resistant types of tuberculosis, which demands longer and more toxic treatments with a less chance of survival.
Currently, Samvel receives treatment for extensively resistant tuberculosis. The degree of resistance is so extreme that he was allowed into a programme with two new types of medicine – Delamanid and Bedaquiline.
Samvel lives in the Vadashen district in the outskirts of Yerevan Armenia. He has stop tuberculosis treatment and gotten the extensively resistant type that only 20 percent recovers from.
DRUG SENSITIVE TUBERCULOSIS (TB)
The most common form of tuberculosis. Treatment follows the standard drugs and 83 percent of patients are successfully treated in around six months.
MULTIDRUG-RESISTANT TUBERCULOSIS (MDR-TB)
A type of tuberculosis that is resistant to isoniazid and rifampicin the two most powerful drugs to fight tuberculosis. 52 percent of patients are successfully treated.
EXTENSIVELY DRUG-RESISTANT TUBERCULOSIS (XDR-TB)
The bacteria has developed resistance to a wide range of drugs, at least one antibiotic drug and one of the three non-standard injectable drugs. Only 28 percent of patients are successfully treated.
RESISTANCE ON THE RISE
After the fall of the Soviet Union, Armenia became one of the 27 high MDR-TB burden countries in the world. Andrei Dadu, a researcher at WHO monitoring TB in the European region, says this was primarily because of mismanagement of treatment in Eastern Europe in the post-Soviet years. Hospitals didn’t follow the international guidelines for treating TB and began to prescribe one or two drugs instead of the whole regimen of drugs, which caused a rise in MDR-TB cases.
It changed when the Armenian government adopted a national TB strategy in 2006. Since then, the rate of people falling ill with TB has been going down together with the mortality rate, and in 2016 Armenia left the 27 high MDR-TB burden countries. But while ordinary TB has been going down, the rate of MDR-TB has not changed much in Armenia. 8,9 percent of new TB incidences in Armenia are drug resistant, two times higher than the global average at 3,9 percent.
Mariam Avanesova was one of the 8,9 percent who caught the MDR-TB directly. She was studying psychology and didn’t know anything about the illness when she was diagnosed in 2009. The treatment lasts two years with daily visits to the hospital where you receive up to 20 pills every day and one injection a day during the first eight months. When you are done with the treatment after two years you have taken 14.600 pills and been injected 240 times.
According to Karapet Davtyan, a researcher in public health at the American University of Armenia, the two main reasons for stopping MDR-TB treatment is the longevity of treatment and the side effects caused by the toxic drugs. Mariam had to stop treatment because of the side effects that she compares to a huge bouquet of different flowers.
“I was dizzy all the time and had daily vomits. Black spots started to show on my skin, ringing sounds in my ears and very strange smells all the time,” she says.
After some time her health started deteriorating without treatment, which convinced her to restart treatment. She completed her treatment in September 2012 and is now working with the psychological effects on TB patients at the National TB Center.
LEAVING THE HEALTH BEHIND
A large part of the patients interrupting treatment have financial problems during the long treatment. Migratory work is part of this issue. A report on the increased risk of MDR-TB for migratory workers says that 15 percent of all Armenian families regularly seek seasonal work with Russia as the main destination.
”When they start the treatment in Armenia and then migrate to Russia to work they become resistant to the treatment and are even worse off. In some ways it is better to not have a TB programme at all than to have a weak one,” says Marie-Jean Pare, director of Doctors without borders MDR-TB mission in Armenia.
To prevent the habit of dropping out of treatment the government introduced a social support program in 2009 funded by the Global Fund. The point was to create an incentive for patients to stay in treatment and minimize interruptions since patients need to attend treatment to qualify for social support.
Samvel is seven months into his two-year long treatment and has depended entirely on social support since he started. It is impossible for him to fit a job with the side effects and the daily visits to the hospital. Without social support he would have to stop treatment because he cannot afford food or a place to stay without a steady income. Before the social support consisted only of food packages and hygiene kits, but now it is being tailored to more individual needs, since some patients in the villages grow their own food but cannot pay their heating bills in winter.
“To make the treatment more attractive the patient’s quality of life should be improved as much as possible. That means to receive social support, not being forced to the hospital every day to receive treatment and not being hospitalized,” Karapet Davtyan says.
Hospitalization has especially been a big concern for the National TB Programme in Yerevan for some time. Until 2014, Armenia had the longest hospitalization time in the European region with an average of 240 days of hospitalization for MDR-TB and XDR-TB cases. Back then Armenian hospitals, like all other former Soviet countries, were funded by bed occupancy per day. It encouraged hospitals to admit most patients and a maximum stay, even though it is more expensive, patients have a higher risk of reinfection and it is not in the interest of the patient who cannot live a normal life.
When the financial system changed in 2014 to fund per case and maintenance, the hospitals stopped filling the beds and the number of hospitalizations went from 6.513 in 2013 to 4.382 in 2015. The success of the reform was recognized as best practice by the World Health Organization, since other former Soviet countries struggle with the same problem of high numbers of hospitalization.
Armen is one of the 140 hospitalized tuberculosis patients at the National TB Dispensary. He will be discharged when he is no longer contagious. In 2015 the average hospitalization time was 22 days.
ENDING AN EPIDEMIC
Director of the National TB Programme, Armen Hayrapetyan, believes the only way to eliminate the threat of TB is to create a vaccine. In spite of global initiatives and new drugs he calls a success the disease will still exist. According to WHO’s Global TB Report the number TB incidences have fallen by 1.5 percent every year since 2000, at this rate the Sustainable Development Goal saying 80 percent fewer TB incidences in 2030 compared to 2015 will be reached in 2182.
Around the world 10.4 million people were estimated to develop TB in 2015. Together with 1.8 million deaths TB is the most killing infectious disease worldwide with more victims than malaria and HIV. Ending the TB epidemic will therefore need improvements in multiple fields from socio-economic development to new vaccines and better diagnostics.
Andrei Dadu, the researcher at WHO, says numerous drugs and vaccines are in the pipeline in different phases of development. WHO estimates a new vaccine will be ready in approximately 10 years, following the projection of the global goals despite a funding gap annually of 2.8 billion dollars.
The treatment with the drugs delamanid and bedaquiline is a new project Doctors without borders launched in 2014 in collaboration with the National TB Programme in Armenia. These are the first new TB drugs in 50 years and are only given to severe cases like Samvel’s, where all or most other drugs are proving inefficient.
”I can feel there is a difference. I am getting better and it gives me hope and confidence that I will get better with the new drugs,” he says.
Living on social support in a rented house with his wife while receiving the new treatment, Samvel finally believes that he will be cured even though only 20 percent are cured from XDR-TB in Armenia.
“My dream is to find a job in order not to be hungry all the time. I want to feed myself through my own work. That is my only dream,” he says.
Incidence of TB per 100.000
TB case detection rate