Anya Sarang and Tim Rhodes: “The last way” clinic: why tuberculosis remains an incurable disease in Russia
Yekaterinburg city tuberculosis (TB) clinic on Kamskaya Street specialises in the treatment of TB/HIV co-infection. We first visited in November 2009, as part of an ongoing qualitative study undertaken by the Centre for Research on Drugs and Health Behaviour at the London School of Hygiene and Tropical Medicine, and funded by the World Health Organization Regional Office for Europe. While we were there, both patients and doctors referred to the clinic as “the last way.” From patients’ accounts of Kamskaya Clinic, you would not think that tuberculosis is a curable disease:
“Our hospital is called ‘the last way.’ People come here only to die.”
“[The HIV doctor] told me I had to go to Kamskaya. I say, my immune system is strong enough for treatment, and you shouldn’t send me to Kamskaya! Because that is “the last way.”
Our interviews with patients from Kamskaya offer some explanation why there is so much pessimism and such little hope. Most patients arrive at the hospital following late diagnosis of HIV, and with their immune systems already weak. As with other TB clinics in Russia, there is a waiting list:
“The hospital is full. Now on our floor there are no free beds at all, so either someone gets discharged or dies [to free the beds for other patients].”
Most patients at Kamskaya are current opioid drug users, yet the services they need most are either unavailable or extremely difficult to access. There is no treatment available for drug dependence, there are no trained drug specialist staff, nor medications to relieve symptoms of opioid withdrawals. Patients are left to “sort out” their drug problems themselves. Most resort to buying drugs and using them while in the clinic, risking disciplinary charges or forced discharge.
There is little or no collaboration between the Kamskaya clinic and the city AIDS centre. Neither immune status or viral load monitoring were available within the Kamskaya clinic. At the time of our study, in order to receive their monthly supply of ARV therapy, patients had to travel from the hospital to the AIDS Centre, irrespective of the state of their health.
In addition, palliative care was not available. Many died unattended with death described as commonplace:
“I spent 2 months in the intensive care ward. I was the only one who came out of there alive. Others went out in sacks. The day I got there, my neighbour died, and then [someone died] every day or two.”
With care as well as hope so severely rationed, there appeared little sympathy among patients for the dying:
“They just die like cockroaches, they don’t want to be treated – they just lie there and take other peoples’ slots!”
In the cold spring of 2010 basic living conditions became insufferable. The hot water supply was cut leaving patients with inadequate heating, unable to do their laundry or take a shower, and with a shortage of food. Patients began rioting in protest against the conditions. With the support of a local Non-Government Organisation (NGO) “Chance+,” several patients complained to the Regional Ministry of Health and set up a press-conference. Widespread media coverage led to meetings between the Ministry and the head specialists of HIV, TB, and drug services. As a result of this action, conditions in the hospital improved. The hot water supply returned, food improved, and an infectionist was employed to treat HIV and provide ARV. At the same time, the hospital administration made the hospital a “closed” facility. This meant that patients were prevented from leaving the building. The clinic started to operate under prison-like conditions. About 15 patients experienced severe opiate withdrawal syndrome. They had been warned that should they violate the treatment regimen and leave the hospital they would not be allowed to return for treatment. Those who previously wrote to the Regional Ministry of Health to complain of clinic conditions reported that they were harassed by the clinic into writing letters to the Ministry retracting their original complaints.
Patients’ frustrations, as well as anger, became directed towards the NGO Chance+, who were blamed for making life in the clinic intolerable. As a consequence, Chance+ stopped all advocacy activities on behalf of patients living with HIV and TB, as they feared they would make the situation worse. Yet one patient has acted further and has submitted an official complaint to the United Nations Special Rapporteur on the Right to Health, describing the prison-like conditions operated in the clinic.
By the time of our second field visit to the clinic in late June 2010 patients were reluctant to talk to us about the conditions. They were no longer prevented from leaving the hospital for short breaks, but drug testing was strictly enforced, and positive tests for opioid use resulted in immediate dismissal:
“They test for drugs. You have to pee in their jar, they put the test stripe there – and immediately you are sent to check out [from hospital]. They don’t even want to talk to you: here’s your test and get out of here with your belongings.”
The situation in the Kamskaya clinic is one illustration of the urgency of TB treatment reform in the Russian Federation. For the past two years, TB has been the leading cause of death for people with HIV. The health system is unable to address the needs of TB/HIV co-infection. The system relies on in-patient care that lacks integrated HIV and drug treatment services, and has no provision for opioid substitution therapy for current drug users wishing to treat their drug use. Outpatient services, including home-based care and community directly-observed-therapy (DOTs), are lacking. People accessing treatment for TB have little choice but to spend on average 3-6 months, sometimes up to 18, in hospital, often in conditions like those in Kamskaya. Many people do not finish the course of treatment. According to the WHO, Russia is leading the way in the development of multi-drug resistant forms of tuberculosis. The “last way” clinic goes some way to highlighting why. There is an urgent need for healthcare reform in the country that puts people’s right to evidence-based treatment first. This requires access to integrated HIV and TB treatment, which includes treatment of drug use through the provision of opioid substitution therapy.
This story is based on interviews and observations carried out as part of ongoing qualitative research led by the Centre for Research on Drugs and Health Behaviour at the London School of Hygiene and Tropical Medicine, University of London. The study has ethical approval from the LSHTM, and all interviews were undertaken with informed consent and were confidential. This research is funded by the World Health Organization Regional Office for Europe.
Anya Sarang is head of the Andrey Rylkov Foundation for health and social justice, Moscow. Tim Rhodes is a professor of public health sociology, and the principal investigator of this research.