At the XXII International Conference on HIV/AIDS in Amsterdam, we managed to talk with Natalia Sidorenko, a specialist having a long practical experience in the field of TB services, as well as an expert of the regional group of the PARTNERSHIP program implemented in Eastern Europe and Central Asia.
Natasha Sidorenko told us about her experience of working with drug users and people living with HIV, affected by tuberculosis, about the situation with HIV and TB treatment in Russia, about existing problems, and contemplated on possible solutions for them.
– Natasha, how long have you been working in the HIV/AIDS field?
I entered this area in 2002. At first I was just a volunteer, then I started to get involved in the actual realities, and I, a young blue-eyed girl, a novice in this area, was really amazed to see the work style in the non-profit sector. They focused on the person rather than someone’s dependencies and other “drawbacks”. This is probably the fact that had the greatest impact on me back in my 18. A little later a TB control project started on the basis of the harm reduction project where I worked, it was aimed to control tuberculosis among drug users. With this project I started working in the TB response area.
– What exactly you had to do?
At that time, I worked a lot at low-threshold services aimed at HIV prevention among a variety of populations, as well as care and support for people living with HIV and using drugs. I remember that in 2004 I used to bring anti-TB medicines to people who could not stay in the hospital. I motivated them to take pills daily. These were people who used drugs, my friends among them. Fortunately, some of them are still alive, and those who are not with us anymore, died from other causes than TB. I remember that it was very inspiring. And, probably, the idea that people need help, and I can offer such help, motivated me to continue working and carry on helping people.
– What has changed in the last 15 years in HIV activism?
If we talk about the community, then, of course, our expertise has greatly increased. I remember me and my colleagues in early 2000s, when we had very bold dreams about our opportunities and activities. 15 years ago we did not even hope that we would once conduct research and monitoring, which will become a convincing argument in the dialogue with the government. And now it has become a reality. However, there must be the political will to make important and necessary decisions, which is still another problem. At the very beginning of my career, there was much more freedom and opportunities, and I miss this very much.
For example, in Russia a rather active community of patients carried out monitoring of the procurement of drugs or the provision of HIV-positive women with milk formulas after delivery, detects interruptions and promptly alerts about problems. This is the work that is visible to our state officials and health services, and in most instances they respond properly. However, so far not everyone is ready to accept the fact that the community expertise has been built up, but one can hardly argue about this.
– Can you cite examples of such expertise?
For example, the issue of developing services for pregnant women who use drugs. “E.V.A” Association conducted an unprecedented study in the EECA region. Over 200 pregnant drug dependent women were interviewed. The project lasted for 4 years, and we studied the barriers for access to health care among women using drugs from several perspectives, we collected the opinions of patients, health workers and specialists from NGOs. A strong evidence base was collected, a report was written, the letters presenting study were submitted to the Ministry of Health, the Chief Infectious Diseases Specialist, but nothing changed. The only assistance a pregnant drug-dependent woman can receive in Russia so far is to get enrolled in the drug clinic and that’s all, but the problem is that she may never actually get there. And if she has HIV, it is very difficult to bring her to the AIDS center and prescribe medications to prevent the transmission of HIV to the baby. The existing drug treatment services have almost nothing to offer to pregnant women using drugs. Only in several regions there are wards for pregnant women at drug treatment clinics. Meanwhile, NGO-based low-threshold services have resources and experience, and if these are consolidated and reinforced with quality medical care, if these women are able to access substitution therapy, then there will be practically no problems with adherence to any treatment and monitoring in health facilities.
I could provide another example, at the end of last year the Eurasian Women’s Network on AIDS conducted a community-driven study “HIV Criminalization Scanning in the EECA Region”. In the EECA region, cases of prosecution of PLWH are most often associated with the transmission of HIV during heterosexual intercourse. HIV criminalization is a gender issue. The legislator probably thinks that an article in the Criminal Code will protect people from infection. Unfortunately, it does not have any real benefits, the criminalization of HIV makes women even more vulnerable to violence and structural inequalities with regard to HIV.
– Despite all efforts, the epidemic in the region continues to develop by leaps and bounds. Why?
This is a very broad question, of course. It is necessary to stop the criminalization of HIV-positive people, this causes only problems and by no means contributes to reducing the number of infections. Every person should understand that they are responsible for their own health. HIV testing and HIV treatment should be provided to people without any obstacles and absolutely free of charge.
– According to the latest data, currently more than 50% of deaths among PLWH are associated with tuberculosis. Is it possible to change something and reduce the number of these deaths?
If we talk about reducing the mortality of HIV-positive people from TB, of course, we need to integrate different services into a single site. In Russia, it is necessary to develop narcological care during the TB treatment and to provide access to modern TB diagnostics. Now the period from the first manifestation of TB symptoms to the start of treatment is too long, and the sooner it commences, the more chances a person has to recover and live a long life. And besides late diagnosis and a lengthy diagnostics of drug-dependent patients in the hospital, nobody manages their withdrawal symptoms during the inpatient stay, which is yet another problem. Of course, they will continue to use drugs in these conditions, and doctors call the police when they see drugs being brought to the hospital. Alternatively, the staff will not call police, they just discharge the patients for violating the regime. And that’s all. A person will go home and no one will seek them.
It is necessary to constantly analyze the mortality causes and eliminate them, to strive to find an approach to each patient. Long-term hospital stay can be replaced by home-based therapy, but, unfortunately, the approaches to substitute inpatient treatment in the region are not widely developed, even despite the fact that the World Health Organization recommends it.
– What are the main barriers for timely TB treatment in the EECA countries?
Late diagnosis of HIV and tuberculosis, late administration of antiretroviral therapy, interruptions with TB medicines supply. It is generally accepted that early initiation of antiretroviral therapy significantly reduces the risk of TB in PLWH. A TB doctor can consult patients on the basis of the AIDS center, so that people are not referred to the TB service facilities, where infectious control is not always maintained properly and patient flows are not divided. Why should people get exposed to an increased risk of infection? It is possible to provide NGO-based TB screening, while PLWH may undergo the TB diagnostics on the basis of AIDS centers as much as possible.
– Were there any specific goals or tasks for you to attend this conference?
First, I was happy to meet with my colleagues from other countries. And second, I planned to take part in quite a many events. There have been several sessions on the criminalization of people living with HIV in our region and the world. I am convinced that criminalization only aggravates the situation with the HIV/AIDS epidemic in the world, and my colleagues share this view. The epidemic in the EECA countries does not cease despite the existence of criminal liability even for an attempted transmission of HIV. The Eurasian Women’s Network on AIDS organized and presented the Chase the Virus, not People campaign in partnership with 8 community networks in the EECA region. At the AIDS2018 press conference on the campaign launch, EWNA called on governments and politicians to develop sexual and reproductive health programs which are harmonized with world standards and WHO recommendations, take into account the rights of women to give birth and care for children, prevent the mother-to-child transmission.
– What would you like to wish your colleagues?
I really want us to avoid professional burnout. I want the external conditions beyond our control to improve, so that we would no longer suffer from this inability to change things that is burning us from within.
And you know, I often think about a wonderful future and I’m curious whether I would be ever be able to work in a country where there are no interruptions with medicines, where there is substitution therapy, where the social assistance system does not oust a person without documents, but treats them as people, not as miserable creatures deprived of their rights.