TB in civil society: Facing a rising epidemic
While mortality and incidence rates of tuberculosis in the penitentiary system of Kemerovo are diminishing, the epidemic is on the rise among the region's general population of three million, as it is nationwide.
The Yagunovski Hospital
The foul smell is the first, shocking blow that hits occasional visitors entering the TB hospital of Yagunovski. Next is the sight of emaciated patients sinking in old, steel wire beds lining the corridors due to overcrowding. Some 200 people here have access only to two decaying showers with one and a half hours of warm water per day. To avoid these facilities altogether, many of the patients only wash on weekends when they go home or to a friend's house. The general state of neglect of the hospital is the result of lack of funding. And when money does make it to Yagunovski, much of it disappears into cracks and leaks. Soviet, Cold War era posters still decorate the walls, instructing citizens how to protect themselves in the event of a chemical or biological weapons attack.
Discretely located among the small, wooden homes of a village just outside of Kemerovo City, the TB hospital of Yagunovksi has become a place to isolate patients who are chronically and terminally ill. A majority of them are persons of low socio-economic status: ex-prisoners, drug addicts, alcoholics, the homeless... Newly infected TB patients with a similar 'profile' are also referred here. They are mainly residents of the city of Kemerovo, but some of them also come from other towns and villages in the region (they are usually the poor who cannot pay the entry fee of 250 rubles - about US$8 - to be admitted to the regional hospital).
In the year 2001, 150 inpatients died in Yagunovksi - almost one every other day. The medical staff expects that the mortality rate this year will be higher. In this respect, Yagunovksi is no different from hundreds of other TB health structures across Russia: the epidemic is spreading.
But signs of a new approach to containing the epidemic in the civil sector are beginning to show, even at Yagunovski. A few months ago, the medical staff introduced DOTS to the hospital, after following a training course offered by MSF. Now every day, patients line up to take their medicines under vigilant nurses' eyes.
A new effort to separate patients - the chronic, the BK positive (infectious), and the BK negative (not infectious) - is also underway. A senior nurse says 'we are trying,' but admits it is not easy: on the one hand, lack of space means that patients are often placed where there is an available bed; on the other hand, it is difficult to prohibit patients from wandering in a building where, for the time being, there are no physical barriers between wards. Vera, for example, is BK positive, so she has been separated from her 16 year-old-daughter Nadya, who is BK negative. Though the mother has been told and knows that 'we're not supposed to see each other,' emotions override medical logic, and the two regularly visit each other's wards and chat sitting next to each other on a bed.
Improving sanitary conditions is equally challenging. The showers are in dire need of rehabilitation, but they are one of the most TB bacteria-infected areas of the hospital. An MSF engineer and logistician are wondering how they will find and hire persons willing to risk their lives to rebuild the facilities, even if these laborers accept to wear and regularly change protective masks while they work. The alternative of constructing entirely new showers is currently being studied.
Meanwhile, MSF has just finished rehabilitating the three most critical rooms of the TB laboratory located in an annex to the hospital. Local authorities decided to ferret out the needed funds that exceeded MSF's budget and are currently upgrading themselves the three remaining lab rooms. It is one of many recent illustrations of a certain momentum towards change that is picking up in the civil sector.
Patients at Yagunovski
At 34, Zhenia experienced his first natural high. 'I felt like an angel,' he says, smiling. 'I felt strong, because just with the power of my brain I could overcome drugs. Sometimes I felt so strong, that it seemed to me like wings were growing on my back. I was in heaven. I don't know... I cannot explain it with words.'
He calls it a 'transformation'. It happened at a new drug rehabilitation center in Kemerovo. A friend recommended he go there. Now Zhenia, after being addicted to drugs on and off for 14 years, has been 'clean' for eight months. Unfortunately, what he now cannot rid himself of are the drug-resistant bacteria in his body. Zhenia has MDR-TB.
His mother died of cancer when he was young, and his father was an alcoholic. He grew up in an orphanage and attended a 'special school' between the ages of 8 and 16. He then worked as a construction worker for five years - until, in 1992, he developed TB.
'The surgeon told me that my right lung was OK, but I needed an operation on my left lung,' says Zhenia. 'He told me 'you're young, you'll get better, and you'll be fine''. Zhenia refused to be operated on, and instead of taking medicines, he shot up with opium, to 'feel good' and to forget. 'I am the one to blame,' he says. There is regret in his voice.
Drugs and disease pulled him into a life of isolation, homelessness, and petty theft, and soon he began drifting from institution to institution: detention centers, the TB hospital of Yagunovski, the sanatorium, and round and round again, several times a year. It is likely that he also started and stopped TB treatment many times and that this erratic pattern created his resistance to antibiotics.
Of all the places where Zhenia has lived in the past years, he was the happiest during his three-month stay at the drug rehabilitation center. There, he kept his disease 'a secret'. 'At the center, no one knew I had TB,' says Zhenia. There were no medicines there. People just prayed - there was a 'religious regime', and many planned activities. I felt good. I was surrounded by people who weren't sick. I could talk to someone healthier than I am. My spirit needs to communicate with others'.
Yet because Zhenia was worried that he might infect his 'brothers and sisters', he limited his contact with them, and the amount of time he spent at the center. 'I would have lunch and then leave to work, and come back to sleep. I worked at a cemetery'. Why a cemetery? 'It was the only job I found where I could isolate myself. And besides' - he shrugs his shoulders - 'no one else wanted it'.
Zhenia is silently screaming for an end to the isolation and the stigma. 'I cannot pick up my nephew and hold him,' he says sadly. 'I've heard that in the West, they can cure TB. But here, you can only buy time...' says Zhenia. 'I know that I'm chronic, that I cannot be cured, and that I will die of this disease'. Still, he hopes for 'a miracle' - one that will allow him 'to work again, to get married, to have children'. Statistically, the miracle has about a 25% chance of occurring.
Luba is seated in the sofa with her hands neatly crossed on her lap and her slippers joined on the floor. She is wearing a long, gray gown and a white headscarf. Despite the sorrow in her eyes, she is beautiful.
She thinks she has been in Yagunovski for a week. The nurse checks the records to confirm she was admitted only 3 days ago. Perhaps it felt as long as a week. Perhaps, like the nurse says, she is showing signs of 'alcoholic degradation'. In any case, it is clear that Luba is disoriented and is having trouble adjusting to her new surroundings.
She comes from a village 36 kilometers from Kemerovo. She worked there in a collective farm, and her husband worked in a factory. They lived together for 13 years. 'He mentally and physically abused me,' she says softly. She was afraid to tell anyone, but one day she left him and went to sleep at a friend's house. Her 16 year-old-son from her previous marriage is now staying at a boarding school. She arrived at the hospital without any identification papers.
Does she know how she got TB? 'I don't have the slightest idea,' she says. 'I heard about it before, but I didn't know it was so painful. it is hard to breathe'. The disease has attacked both her lungs. She regularly stops talking to cover her mouth and let out a long, deep cough. She curls up her body and closes her eyes in an effort to overcome the pain then slowly lifts her head back up.
To the question 'how do you find it here?' she responds again softly with a single word: 'teplo' (warm). It is one of her many answers matching the hospital staff's suspicion that she has been homeless.
Sergei and Alexander
Sergei slept in today, so instead of his early-morning, one-kilometer jog in the forest, he got his outdoor exercise shoveling snow to clear the paths around the Yagunovski hospital grounds. This afternoon, after a game of backgammon, he will lift weights in his room.
'If I don't take care of my health, who is going to do it for me?' he says matter-of-factly. Sergei, 35, stopped working at a gas station in Kemerovo to cure his TB. After four months in Yagunovski, he is no longer contagious. He is getting better, and can feel himself regaining strength.
He laughs when asked about his nickname and reputation here as 'the sportsman'. Humbly, he admits that other patients sometimes try to follow his example by exercising daily. He also tries to encourage patients not to drink. 'it is a stupid act. I tell them not to do it, but most of the time they don't listen to me. They realize they're doing harm to themselves.' He sympathizes with the medical staff who 'have a tough job' dealing with rough, intoxicated patients and trying to control the traffic of harmful substances in the hospital.
Alexander, who stays in the same hospital room as Sergei, says, 'usually they start drinking when they're feeling better.' He is a construction worker and ex-prisoner from a village in the north of Kemerovo with chronic tuberculosis. Though he speaks in the third person plural, until recently Alexander was himself a heavy drinker, and the strong antibiotics he is taking to cure his TB are now causing him liver problems. 'They feel better,' he continues, 'so they think 'why not take 100 grams of vodka?' They believe they'll only do this once or twice, but then they continue'.
Temptation often surfaces as soon as patients are released from the hospital. Friends and family warmly greet them when they arrive home. Traditionally, there is vodka at the dinner table, and sometimes back-to-back toasting 'to your health!'
'When they drink, they lose their appetite, they don't eat properly, they start losing weight and feeling weak, they get TB again, and months after they die' says Alexander. it is a downward spiral he's familiar with. Though he clearly links one's chances of being cured of TB with one's 'way of life' and self-discipline to take medication, he seems to be only reciting a lesson. Deep down, he doesn't believe what he's learned, and he transfers his fatalism to the doctors: 'They can't cure you of the disease, they can only stop it for some time'.
Tatiana Elagina has been working for 20 years as a TB nurse, and for the past eight she has been in charge of the department of new cases at Yagunovski. Her feeling is that 'about half the patients here want to be cured and regularly take their medicine. The other half doesn't care. People who have a family and a job want to be cured. But the homeless, the alcoholics and the drug addicts often don't understand or forget to take their pills. Social status plays an important role'.
Then, of course, there are those who want to be cured but can't be. 'Not everyone is lucky,' she says.