IMR Advisor Boris Bruk spoke with Anya Sarang, president of the Andrei Rylkov Foundation for Health and Social Justice, about the ongoing tuberculosis problem in Russia.
Boris Bruk (BB): What is your assessment of the current situation regarding TB in Russia?
Anya Sarang (AS): The situation is critical. Russia has become a world leader in TB and currently, following India and China, has the largest total number of multidrug-resistant TB (MDR-TB) cases. The recent WHO report demonstrates that while the number of TB cases has been increasing, the rates of treatment success are very low in Russia. Only about half of patients are treated successfully. It is the lowest rate in the world. Also, according to the report, progress in the TB treatment success rate was detected in all countries except Russia and Ethiopia. The same is true about MDR-TB; Russia is currently in third place after China and India, with only 31 percent of MDR-TB cases diagnosed. Russia is ranked first in the European region in mortality rates among patients with MDR-TB (20 percent of registered instances). Additionally, according to the WHO report, the cost of treatment for MDR-TB patients in Russia is one of the highest in the world. On average, the cost of treatment (with first-line anti-TB medications) reaches $100 to $500, while in Russia the cost is approximately $1,000.
Unfortunately, in general, the current system of TB prevention and treatment is absolutely ineffective. In Russia, there are certain “TB reservoirs,” such as prisons and TB clinics, where MDR-TB spreads. Inadequate prevention and treatment result in a situation in which no changes occur in the health care system despite significant investments in treatment and the availability of funds to purchase medications (although this is not always the case; for example, second-line anti-TB medications are almost unavailable in the Russian prison system). It is unlikely that the situation will improve in the near future. I guess it could get even worse—mortality rates, the number of MDR-TB cases, and cases of untreatable TB could increase. Unfortunately, at this point, I am not optimistic in that regard.
BB: In one of your publications, you suggest that it is a matter of necessity to reform the anti-TB system. What would be the key components of this kind of reform?
AS: The current system is structured in accordance with Soviet principles, meaning that an individual has to be caught somewhere (ideally with the help of the police), isolated, treated in the hospital, and, upon the completion of the treatment, released. Times have changed, and currently, it is much more difficult to catch someone with the help of the police and keep him or her in a hospital without consent. Moreover, the whole process of treatment is very unpleasant; it is very lengthy, and the conditions in many hospitals are intolerable. People just cannot stay in the hospitals for a long time; treatment might take 12 or 18 months! The system is not designed for treating a patient using directly observed therapy (“DOT”) and, at the same time, in an environment in which the patient might feel comfortable. Ambulatory care services are often offered in inconvenient locations; typically, there is only one location for the whole city, with patients crowded inside the clinic; it is inconvenient to get there, etc. Moreover, these services are not well developed. It would be a good thing if community-based options for treatment could become available, so that treatment could be offered in the community where the patient resides. This would require, however, a complete redesign of the system, shifting the focus from developing inpatient care options to multidisciplinary teams that would include physicians and social workers who would provide community-based services: bringing in medications, ensuring that the patient actually takes the medication, helping patients with certain social issues, and promoting adherence to the treatment.
Another significant problem is TB prevention. Indeed, state institutions are the source of TB.
Another significant problem is TB prevention. Indeed, state institutions are the source of TB. An example is the prison system, in which hygienic and infection control norms are violated and inhumane conditions persist. Two years ago, the Russian Minister of Justice openly said that the prison system has remained practically unchanged since the time of the gulag and even the prerevolutionary forced-labor camps. In his words, the medical system in prisons is incapable of adequately handling the “human material” going through the system. The fact that this issue has been emphasized by such a high-ranking official shows that the situation is really critical. In these conditions, it is impossible to control the spread of TB. It is obvious that in order to solve this issue, purchasing medications for everyone would not help. It is impossible to solve the problem of TB without multidimensional judicial reform. The question of the high concentration of inmates in Russian prisons is linked to inadequate laws, the repressive system of police control, and the absence of fair judicial practices. TB is an indicator of the condition of society, which is infested with corruption, injustice, and human rights violations. Given the above, it might be impossible to solve the TB problem without reforming the social system as a whole.
BB: You pointed out that the situation regarding TB is “critical.” According to some official data, however, the situation has been improving (for example, the Ministry of Health of the Russian Federation estimates that in the period between 2008 and 2010, the number of TB cases decreased by 9.6 percent, while the death rate decreased by 14.5 percent). Do the official estimates create an adequate statistical picture?
AS: I fully distrust statistical data offered by the Ministry of Health. First, they are constantly criticized for their data collection approaches. As an example, look at the recent WHO report. Russia is criticized for missing specific data; for instance, data on MDR-TB are collected only at the regional level, national data are unavailable, and there are no analytical pieces. Second, the Ministry of Health is notorious for providing only the data it finds appropriate for a particular purpose. It misinforms the public in terms of the situation with both HIV and TB. One good example is the situation surrounding the grant from the Global Fund to Fight AIDS, Tuberculosis and Malaria. When the Global Fund planned to provide funding to Russia, we all understood how important it was that we get those funds. The program would, for example, help with the second-line drugs for prisons, where drugs of that kind are practically absent. It could have helped to develop innovative ambulatory care services at the community level. However, the Ministry of Health intervened with a phenomenal letter addressed to the Global Fund. I remember how shocked I was: how could one present the data in such a manner that our enormous problem gets turned into our achievement?! For instance, the situation with MDR-TB was presented not as if we are facing this dramatic challenge, but rather through the lens of our success in detecting the infection. As for other countries, including the U.S. and European countries, they are, apparently, just incapable of detecting these cases. There is an impression that the main goal pursued by the Ministry of Health is not to ensure the treatment of patients, but rather to draw a nice picture of the current situation in Russia in order to show that we do not have problems.
Photo by Misha Friedman
BB: TB is a socially significant disease. Typically, to address this kind of problem, collaboration between the government and the public is needed. Are there any collaborative arrangements or initiatives to solve the TB problem?
AS: There is no connection between the government and the public. Community-based services are not being developed, there is no such thing as TB prevention, and medical services are distanced from the population. A good example is HIV-infected persons, individuals who represent the group most vulnerable to TB. As we know, TB is the leading cause of death among people with HIV. Unfortunately, the absence of HIV prevention programs, harm-reduction programs, and the connection with vulnerable groups, including drug users, has lead to a situation in which HIV-infected individuals start seeking medical assistance when their immune status is already low and TB has progressed. People do not believe that the public health care system can help them. [These individuals] often [come from] repressed and marginalized groups, including injection drug users, for whom any contact with the authorities may be risky. The whole system is repressive. It would be useful if the health care system paid more attention to developing prevention programs and built connections with the public, especially vulnerable groups. At present, the connection between the health care system and the public is broken.
BB: Is there a federal program or initiative aimed specifically at fighting TB in Russia?
AS: There is a program that is concerned with socially significant diseases. In general, we must admit that funding is provided and medications are bought (with certain interruptions, of course, but still). In general, there is money—the numbers are in the program and in the regional budgets. The main problem is the health care system itself. In this country, TB treatment is the most expensive in the world, while its efficacy is among the lowest. This means that it is impossible to solve the problem with money only. There are too many questions. How are the funds appropriated? Where do the funds end up? How effectively are they used? For example, there are no mechanisms to monitor the process of TB drugs purchasing at the regional level.
In this country, TB treatment is the most expensive in the world, while its efficacy is among the lowest.
BB: Today, among the major solutions to solve the TB problem, one might hear a suggestion of limiting migration from the “near abroad.” Would this kind of limitation help solve the problem?
AS: I am not really engaged in studies on migration; however, I might suggest that the environment surrounding migrants is conducive to the spread of TB. Their living conditions are often completely inhumane, since the majority of migrants are illegal. Recently, there was some shocking information about individuals living in slavery, in basements, cars, etc. Clearly, nobody has been observing if these people have access to adequate services and resources. They are ineligible for social support, including health benefits, since they are not citizens of the Russian Federation. Migrants are under attack for multiple things: HIV, TB, everything. Instead of developing and providing health services for this group, protecting their rights and health (which, in fact, would benefit Russian citizens as well), they become scapegoats and the targets of chauvinistic PR. This speaks to the repressive nature of the system and the inability to solve problems in the health care system. If a problem emerges, some group of individuals has to be attacked or prohibited. However, if they continue tightening the screws, things will get only worse. By pushing away various groups of individuals, the problems cannot be resolved; they only get aggravated.
BB: For quite a long time, experts and analysts offered warnings to Russians arguing that something has to be done to stop the spread of HIV, but many decision-makers just distanced themselves from the issue. In our current condition, how serious is Russia about addressing the problem of HIV/TB co-infection? Do Russian authorities express concern about this issue?
AS: As for HIV, here we also face a dramatic situation, since the authorities chose to turn their backs on HIV. In the second half of the 1990s, some efforts were made to learn from the experiences of other countries and to listen to WHO recommendations. Today, the authorities either ignore or stand against any attempts to implement HIV prevention activities. They stand against all effective and efficient interventions that have been developed in accordance with findings from successful research studies. Among these are the programs to deliver sterile syringes and needles for HIV prevention and street social work. In the majority of countries, these programs have helped to stop the spread of HIV among representatives of the most vulnerable group—drug users. Moscow authorities even stood against safe sex campaigns, promoting counter-initiatives to prove the point that condoms do not protect individuals from HIV. This position of the authorities in trying to oppose any effective preventative intervention is totally unexplainable, unless one considers some kind of conspiracy theory.
This behavior of the authorities, which is difficult to understand, has not changed for a long time. The only HIV prevention program supported by the government is antiretroviral therapy (ART), in particular treatment of HIV-infected pregnant women. Last year, there was an attempt to appropriate some money for HIV prevention. The whole organization of this process, however, was just terrible. All individuals working in AIDS service organizations in Russia discussed the situation, in which a pool was organized for the purpose of [distributing] kickbacks.
Photo by Misha Friedman
This is what we see in terms of treatment of individuals with HIV and TB. In 2009–10, we did a study on the effectiveness of TB treatment in Russia. It was a shocking study for us. In three out of 13 cities where the study was conducted, we found that 100 percent of persons with HIV, drug addiction, and TB do not complete the full course of treatment. Patients just get discharged from the hospitals for violating internal policies, while the real reason is that Russian TB clinics were not designed to provide treatment to patients with drug addiction. Because of the legal barriers, methadone or buprenorphine programs are nonexistent, despite their primary importance for retention of this group of patients.
BB: What measures would you suggest be used now to prevent the further spread of TB?
AS: First, it is important to work actively (not oppressively!) with the representatives of vulnerable groups: persons with HIV, drug users, homeless individuals who have no connection with the health care system. To develop social services for vulnerable population groups, we should foster harm-reduction programs for drug users and programs for the treatment of alcoholism and drug addiction, which would be based on the latest scientific achievements rather than some voodoo customs or a crackdown. It is important to detect with the help of harm-reduction programs those HIV-infected individuals at the earlier stages of the disease, so that they could start therapy as soon as possible. Changes should be made to the legislation, including Article 228, which sends the most significant number of people charged with nonviolent crimes to the Russian prisons. The system of criminal justice has to be reformed so that fewer people end up in prisons. Medical services have to be reformed, particularly the system of prevention and treatment. Conditions in prisons have to be changed. It may seem that we are talking about large-scale changes, but without serious systemic and structural changes, it is impossible to make changes in the TB prevention and treatment system.
As for treatment, inpatient care should gradually start giving way to community-based forms of treatment that offer directly observed therapy programs. Integration of such services as HIV treatment, TB treatment, narcology, and social services is needed. Integration and interaction are the key words here. This would provide an individual with an opportunity to receive the whole spectrum of services, rather than die of TB while being treated for the HIV infection or drug addiction. It is important to legalize and introduce programs of substitution therapy for drug addicts, which would help to prevent or begin treatment of HIV or TB in a timely fashion and ensure retention in treatment. At the same time, particular attention should be given to developing a welfare system. There is a large number of angles that an effective health care system has to analyze in order to address the needs of vulnerable social groups.
Without serious systemic and structural changes, it is impossible to make changes in the TB prevention and treatment system.
BB: Does your Foundation plan to participate in any anti-TB programs or projects?
AS: We conducted several studies on TB, and, at this stage, we identified major issue areas; I mentioned them earlier. Our current focus is on advocacy. The problem is that in this country, it is almost impossible to influence the decision-making process in ways that are well established and recognized in other countries: by offering research findings and scientific evidence that would demonstrate the effectiveness of health care programs. We tried to organize roundtables and press conferences; wrote letters, petitions, and complaints; and tried to discuss problems with the authorities at the federal and regional levels. The effectiveness of those efforts, however, was quite low. The government is not interested in solving health care issues.
Because of that, we chose to focus on strategic litigation. We have prepared several cases to present to the European Court of Human Rights. These cases deal with such issues as access to the treatment of drug addiction, HIV, hepatitis, etc. We would also like to find individuals who would be willing to fight for their rights in regards to TB treatment. The problem of strategic litigation in TB cases is that the majority of people with TB are in the most powerless and vulnerable position. For example, inmates in prisons are afraid of writing complaints or fighting the system. In many cases, when they are released from prison, their health is undermined and the goal is to survive, rather than to go to court. At present, we have one TB case in a Yekaterinburg TB clinic on Kamskaya Street, where inhumane conditions persist. In collaboration with our partners from the local organization Chance+ and with the help of the Canadian HIV/AIDS Legal Network, we wrote a complaint to the UN Special Rapporteur on the Right to Health, the Sverdlovsk Prosecutor’s Office, and the regional and federal ministries of health. We also organized several press conferences. Unfortunately, within several years, nothing has really changed. The only achievement is that now sometimes the patients are offered the services of an infectious disease specialist. The prosecutor’s office and local Ministry of Health send run-around replies, and nobody really is going to change anything. We believe that in the future we will have additional TB cases. We will continue searching for active individuals willing to defend their rights in court to improve access to an effective anti-TB system in Russia.
