Half of the HIV-Infected Population in Kyrgyzstan does not Receive any Treatment

Infectionist of the city AIDS center Erkin Bakiev knows the importance of counselling the patients on antiretroviral therapy

Author: Olga Ochneva, Kyrgyzstan

Valentina from Bishkek, Kyrgyzstan, found out about her HIV-positive status after her stay at the Russian hospital where she had several surgeries. HIV tests were negative before the surgeries. Valentina could not prove the doctor’s fault and returned home with some hope for the fallacy of diagnosis. When her diagnosis was confirmed, the woman received consulting and support from the doctors at the capital’s AIDS centre and started receiving the therapy.

“In the course of these six years, I have got acquainted with other patients, and then started working as a consultant myself,” Valentina is saying. “I can tell from my experience that most people who deny treatment are afraid of their status to be revealed and they lack information. For example, my husband is in jail now and he also has HIV. He does not receive antiretroviral therapy (ART) even though there is such a possibility in jail. Prisoners think that the therapy has severe side effects. I try to convince him, but he continues to refuse without even trying.”

People are afraid of discrimination and self-stigmatization after being diagnosed with HIV. For many years there was an information attack on HIV being a horrible deadly disease, the Deputy Director of the Republican AIDS Center Aibek Bekbolotov says. He hopes that in the nearest future it will be possible to draw people’s attention to the issue and tell them that HIV is a chronic controlled disease and when you are on treatment and have zero virus load, you cannot pass the virus on.

Today, 3,055 people in Kyrgyzstan receive ART. It makes 56% of all patients who are aware of their disease and 35% from the estimated amount of people living with HIV. According to the UNAIDS goals, the country has three years left to achieve the 90% treatment coverage of people diagnosed with HIV.

Not all doctors know about the mark

Khalida’s child was infected during the mass internal hospital infection case in the south of Kyrgyzstan in 2007-2008. At that time, the boy was admitted to intensive care unit because of an insect bite.

“After the scandal with the infection, doctors started mandatory HIV testing of children. My son was seven when he was diagnosed with HIV. We started receiving therapy, even though my husband and mother-in-law were against it. The boy is 12 now, and he is aware of his disease,” says Khalida. “Earlier we went to Osh regional AIDS centre. We currently receive treatment at the regional hospital where we live. In order to get additional treatment, we need to take a referral from the AIDS centre. I know other parents who deny that the diagnosis is written on the medical card. They occasionally meet doctors who do not know about the special mark on the referral and they can ask about the meaning of the mark in front of everbody.”

Decentralization of ART services to the primary level happened in almost all regions of Kyrgyzstan. It has become more convenient for patients to receive the service. Nevertheless, service in small regional hospitals sometimes jeopardizes the confidentiality of the therapy, as we can see with the mark or mentioning HIV openly on the medical card.

“We received several complaints on confidentiality disclosure. There are not many of them, but one or two such cases quickly spread in the community. They can cause distrust in service providers,” notes Aibek Bekbolotov. “On the primary level, the qualification of doctors in these issues is slightly lower, but we are constantly working on improvements in this area.”

The number of ART involved patients grows every year. Since 2012, the patient coverage has increased fivefold. In many respects, this was due to the introduction of WHO recommendations in the country. They expand the indications for the administration of ART therapy and seek to cover the treatment of all diagnosed patients.

30 out of 100 patients stop taking medicines

The indicators of adherence to treatment in the country improve every year. There is a wider range of medicines, which allows to lower the number of pills, the frequency of taking medications and to reduce side effects. Nowadays, about 60% of all patients, who take ART, achieve efficacy in treatment, that is, the suppressing of viral load to an undetectable level.

“Out of 100 patients who are annually connected to the therapy, 20-30 people stop taking medicine during the first six months. This is the most difficult period during which the possibility of side effects is higher,” says Aibek Bekbolotov. “If people continue the therapy for a year, the interruption rate will be no more than 10%. In vulnerable groups, such as drug users and sex workers, there are many everyday worries about finding a livelihood. It is harder for them to continue the treatment because of their life conditions.”

The evaluation of the effectiveness of treatment is carried out twice a year in accordance with the viral load indicators. Doctors interview their patients, look at the regularity of receiving medicines, remnants of medicines, and the general condition of patients.

“It is the regimen. I know that I need to take medicines. It also happens that I can miss a day or two, because I feel really bad after taking them,” says Valentina. “Doctors are not interested in how strictly I follow the regimen. Their job is basically to give out the medicine. I was tested for viral load in April, but I still have not received the results.”

At the beginning of this year there were difficulties with the purchase of test systems in Kyrgyzstan, the deputy director of the Republican AIDS Centre is saying. Therefore, the examination for viral load in the first quarter of the year was practically not carried out. Until 2016, there was only one laboratory in the country where the viral load was determined. Nowadays there are two such laboratories.

In Kyrgyzstan, they always work on the patient adherence to treatment. ART is purchased from the Global Fund. On the state budget, drugs are purchased for the treatment of opportunistic infections. Nearly 50 NGOs in the country work in the HIV sector.

Natalya Shumskaya: “We Want to Improve Country Health System Coordinating Mechanisms”

shumskayaPublic Foundation “AIDS Foundation East-West in the Kyrgyz Republic” makes a significant contribution to public health of the country in reducing the growth rate of socially significant infections in Kyrgyzstan. The head of AFEW-Kyrgyzstan Natalya Shumskaya is telling what we should expect from the organisation in 2017, and outlines the achievements of the previous year.

 – How was the year of 2016 for AFEW-Kyrgyzstan? What do you think were your greatest successes?

– 2016 was a successful and fruitful for our organization. We managed to keep our activities on HIV prevention in the prison system, including law enforcement, prevention of HIV among women who use drugs. During the last year, 1013 women received an access to health and social services. One of the achievements was that in 2016 our organization supported the Ministry of Health of the Kyrgyz Republic in the development of the clinical protocol “Pregnancy, childbirth and the postnatal period for women who use drugs.” In December of the last year this protocol was adopted. Later, we started a very difficult project with the aim to return the patients with multidrug-resistant tuberculosis (MDR-TB) to the treatment. Since August 2016, AFEW-Kyrgyzstan together with the City Centre for Tuberculosis Control in Bishkek started a project “Joint control of tuberculosis and HIV in Kyrgyz Republic.” During five months of 2016, 17 MDR-TB patients returned for the treatment; three patients co-infected with HIV were connected to antiretroviral treatment, five patients with tuberculosis and extensively drug resistant TB (XDR-TB) had the necessary tests, and their results were given to the council for inclusion in a treatment program under the new scheme. There was organized controlled treatment at home for 28 patients. The delivery of products is done 6 days a week, except Sundays. Additionally, project case managers conduct information sessions with patients with MDR-TB and their inner social circle, monitor the side effects of anti-TB drugs, and, if necessary, deliver drugs to relieve the side effects. They also maintain regular contact with doctors. In January of 2017 we increased project staff. It was done for the full coverage of all MDR-TB patients who need to receive treatment at home and assisting them to diagnosis and friendly services. Two case managers and a social worker were hired.

– How is the work of the research department of your organization that you created two years ago?

– The Department continues to work successfully. Over the past year, the researchers conducted a qualitative study among the inmates of correctional facilities that are getting ready to be released. It was called “Prisons, injecting drugs and the environment of risk of HIV infection.” This is a continuation of the positive experience of effective cooperation of AFEW-Kyrgyzstan with medical school researchers from Yale University and the State Penitentiary Service of the Kyrgyz Republic. This study aims to describe and research the quality of the program of methadone substitution treatment in the penitentiary system of Kyrgyzstan and civil society. The recommendations based on those results will be offered to the country to optimize harm reduction programs.

– One of the main directions of your work is cooperation with the police and the prison systems. Please tell us, how is this cooperation going? What is the role of AFEW in it?

– AFEW cooperates with the Ministry of Internal Affairs for 10 years already. In 2016 our organization has provided technical support to the Ministry in carrying out monitoring visits to all the regions of the country. The aim of the visits was to control how the law enforcement officers perform the instruction on HIV prevention. In addition, we organized and conducted four trainings for the staff responsible for the official trainings and for non-governmental organizations on the reform of law enforcement agencies. It is important that the civil sector supports current reforms, and it is important that law enforcement officers assist the execution of the State Programme on HIV.

AFEW is also working with the penitentiary system of the country for more than 10 years. We work together in three areas: technical assistance and coordination, increasing the capacity of staff and providing direct services to prisoners. In 2016 we worked first in six and then in four institutions to promote the goal 90-90-90. We provided services for people who inject drugs (PIDs), told them about HIV and the ways of transmission, motivated them to pass the test for HIV. We actively worked with people living with HIV at the stages of realising of the diagnosis, preparation for therapy, start of therapy, development of adherence to treatment. One of the achievements, of course, is to extend the work on the colony-settlements. Before, prisoners there fell of HIV prevention services, as there are no medical units there, and they usually have no documents for getting help from the civilian health organizations.

– In October AFEW-Kyrgyzstan helped to sign a memorandum of cooperation of four key groups. Please, tell us what these groups are and why their teamwork is so important? How is this cooperation going now?

– Unfortunately, there is mutual stigma within the key groups. Cooperation can help to overcome barriers and build partnerships. The leaders of key groups started to work closer. They discuss new joint projects, research abstracts for AIDS2018 conference in Amsterdam. Together they will carry out activities to reduce stigma and discrimination in relation to other key groups through the mini-session, for example, PIDs for LGBT and sex workers’ organizations. Since last year, we have been inviting all the participants of memorandum for the event and, of course, they also invite us for their events.

– In February, you will host a training for the members of the Country Coordinating Committee on HIV/AIDS (CCC) project BACK UP-Health. Tell us more about it. What are other areas of your work with the CCC?

– Starting from July 2016, AFEW-Kyrgyzstan will implement the project “Harmonization and consolidation of resources to fight HIV infection and tuberculosis in Kyrgyzstan.” It will be done with the financial support of GIZ, program Back Up-Health. With this project we want to improve the coordination mechanisms in the country’s health care system. We want to involve civil society in the discussion on the reform of CCC, and we also want to increase the capacity of the Committee. In February of 2017 AFEW-Kyrgyzstan plans to host a seminar for members of the CCC to prepare the Country Request for continued funding in the state funding for 2018-2020. The following groups will take part in the seminar: members of the Committee for the preparation of applications for resource mobilization and harmonization of CCC; CCC board; members of the Advisory Working Group, which were included by the Kyrgyz Ministry of Health; national experts who work on the preparation of the request for continued funding who will directly collect information and write application; international consultant; head of the expert working group on writing requests for funding, and also key partners from the public and international sectors which may influence decisions and who expressed their readiness to provide technical assistance in the preparation of high-quality country request to the state financing from Kyrgyzstan. During the workshop, participants will act as experts and will share their knowledge and experience with each another. They will also learn how to fill the forms for the requests, will learn the new priority areas of TB and HIV, which are included in national policies and programs, will discuss and analyse the share of public funding, make mapping of the services, clients and funding. Actually, the main purpose of this seminar is to assist the CCC, experts and other stakeholders in the preparation of high-quality application. We want everyone to have one vision and one structure of the request, so that the process of approval of the CCC members is efficient and fast.

– What are AFEW-Kyrgyzstan plans for the year of 2017?

– AFEW-Kyrgyzstan spent its first three years as a local non-governmental organization. The most important achievement is that we were able to successfully implement its first strategic plan and to develop partnerships with international and donor organizations. In 2017 we will review the strategic plan of the organization. Of course, the priority for the board of the organization has been and continues to be ensuring of the stability of the organization.

Bridging the Gaps in Women’s Hostel in Kyrgyzstan

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Leila and Sofia live in women hostel in Bishkek

Five-year-old Sofia is playing with her mother’s telephone. The girl is sitting on the floor and is listening to the music. She is switching between the songs, watching videos, and trying to find her favourite track. There are four beds in a small room. At some moment, the girl puts the phone away and asks: “Mom, what will Santa bring me?”

“What would you like, dear?” she hears from her mother, and the broad smile appears on her face. “I would like him to bring me a kitten. I will feed it with milk.”

When the girl is smiling, she has cute dimples on her cheeks. She brings a toy – plastic alphabet with the buttons. She presses the letters and repeats them. Sometimes she gets the letters wrong, and then the mother asks her to do it again.

TELLS ABOUT HIV TO NEW FRIENDS

Sofia and her forty-year-old mother Leila live in the hostel that operates in the centre of adaptation and socialization of women – injecting drug users in the public fund Asteria in Bishkek, Kyrgyzstan. Leila was recently released from prison.

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Leila is teaching Sofia an alphabet

“I do not have any relatives; I was raised in the orphanage. I got to prison when I was pregnant, and my daughter was born there,” Leila tells. “Now I work in the kitchen or wash the floors. Recently I went to Turkey, and wanted to find a job there, but I do not know Turkish language, and that is why it did not happen. By education, I am a seamstress and a pastry chef, but it is hard to find a job because I am HIV-positive. I am being asked about my diagnosis all the time, and I always have to go through medical examinations. Now I have found a job as a nursemaid, but I do not have anyone to leave my daughter with. She has to go to kindergarten, but all of them here are not free of charge. I will have to spend almost whole salary to cover the pay for kindergarten… I am currently waiting for the cash advance to pay.”

Leila says that she tells her new friends about her diagnosis, even though she does not always want to do it.

“I think, people with my disease should talk about it, and warn others as well. Now I also bring other people to get tested. I am telling them they have to do it, and that it is free of charge,” Leila says. “Of course, people treat me different when I tell them about my diagnosis. Yes, it is unpleasant, but I am happy that in this way I do something nice to others. Everybody should know such things.”

PRAYING FOR ASTERIA

Leila is worried that the hostel in Asteria can be closed. In that case, the woman can end up on the street. She does not have anywhere to go to.

“I should not be complaining; we have everything here. The main thing is the roof over your head,” the woman smiles and hugs her daughter. “I am very comfortable here. We receive medical treatment, there is a place to sleep, to do laundry. Every Sunday we go to church. In the church I always pray for this house, for people who help us here, and ask God that the organization has donors.”

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The head of Asteria Iren Ermolaeva shows the rules of the hostel

Leila says that she would like to move from the hostel in the future, but she does not have such possibility yet. She dreams of her own home, family, and work. She also wishes that the hostel will never close. People who work in Asteria have the same desire.

“We indeed often have problems with financing. Every year we do not know what to expect in the next one,” the head of the public fund Asteria Iren Ermolaeva says. “Our public fund is working since 2007, and the hostel – since 2009. We would like to have the whole range of services, but there is not enough financing these days. We know how to find the approach to women, we know how to create friendly atmosphere so that a woman would want to change her life for better herself, and we would like to use this knowledge. We feel sorry for our clients, and we would like to help them more.”

DREAMING ABOUT OWN HOUSE

Workers of Asteria also dream about purchasing the house where they will place the centre of adaptation and socialization of women – injecting drug users and the hostel. They have already found funds for the future house renovation, but cannot find money for its purchase.

“Then we would be able to have social entrepreneurship, maybe some little farm. In that way, we could at least not depend on donors in food,” the coordinator of the social services of the fund Tatiana Musagalieva is saying. “Until now, we rented all three houses for our centre.”

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Asteria workers Iren Ermolaeva (on the right) and Tatiana Musagalieva say that their organisation often has problems with financing

Thanks to “Bridging the Gaps: Health and Rights for Key Populations” project from Public Foundation “AIDS Foundation East-West in the Kyrgyz Republic”, in 2016 Asteria could support four beds in the hostel. The project also helped with medicine and warm food.

“People often come to us to eat, to do laundry,” Iren Ermolaeva says. “Around 300 women come through our centre during one year. Leila, for instance, came here after she was released from prison. She has got all the necessary services, clothes, shoes, and got medical examinations. Leila was imprisoned for five years, and, now, due to the conditions that we have, she adapts and integrates into society. In this way, she becomes more confident in herself, can find a job and build her future.”

Community Members Learnt how to Do Research Themselves

img_111324 participants from 11 countries took part in the community-based participatory research training in Bishkek, Kyrgyzstan on 8-10 November. Three-day training equipped participants with the skills on how to conduct community based participatory research.

Participants learnt how to form community-based participatory research (CBPR) partnerships and how to access community strengths and dynamics. The trainers explained how to identify priority public health issues and research questions, how to design and conduct causal, intervention or policy research.

“Being the member of the community myself, I wanted to know about how to conduct the research in the context of HIV/AIDS, tuberculosis and people who use drugs. Researching is very exciting, especially if you can relate to the topic. Before I did not have any similar training, but now I already have some ideas for the future work,” –director of “Community of people living with HIV in Uzbekistan” Sergey Uchayev says.

Participants became “critical friends”

img_0863The e-learning course, developed by Health[e]Foundation, AFEW and FLOWZ, within the training was meant to equip community based organizations and community members with tools and resources to conduct CBPR.

“What inspired me about people in this workshop was that although they came here two days ago from 11 different countries, they were immediately working together as one group. They became so-called “critical friends” who help and support each other in shaping first ideas into very specific, good quality research plans,” says the project manager of Health[e]Foundation.

img_0637Training participants, lots of whom were members of the communities, got the skills in doing the research and came up with new ideas. They got to know about data collection methods and drafted their research designs. Participants also noticed the practical side of the training. “During the training I came up with many ideas and was able to structure my earlier knowledge for myself. I also started to understand who these researches are for, why they should be conducted and how the results could benefit the communities,” – director of public association “Ameliya” from Kazakhstan Natalya Zholnerova is saying. – “The atmosphere during the training helped studying and sharing my own knowledge. Now I understand more how to choose the region and target group, and what donors are paying attention to.”

Grants will be soon announced

img_1164AFEW International director Anke van Dam announced about the possibility to apply for grants that will support their research. Grants for community based organizations and community members will be announced soon.

“It is very valuable that there is a possibility to write a grant proposal and implement some project in the future,” – the volunteer of Belorussian MRF “Feniks” Kateryna Parfeniuk is saying. – “Every day of this training was useful for me, and now I have valuable instruments for my future work. Informal communication with the training participants provided me with some additional ideas.”

The training in Bishkek was the first step in the capacity building program for community based organizations in order to enable them to develop and conduct CBPR, analyze collected data and present them at the AIDS Conference 2018 in Amsterdam. The following trainings and webinars as well as the online e-course will support developing abstracts for the AIDS2018.

Further information will be available on AFEW website.

24 Participants from 11 Countries Come to the Training in Bishkek

bishkek-640-3214524 participants will take part in the community-based participatory research training that will take place in Bishkek, Kyrgyzstan, on 8, 9 and 10 November 2016. Participants come from the following countries: Armenia, Azerbaijan, Belarus, Georgia, Kazakhstan, Kyrgyzstan, Moldova, Russia, Tajikistan, Ukraine and Uzbekistan.

There was a great interest for this training, we received more than 200 applications. Those organizations that were not selected to attend the training will be able to access all the information online. The online e-learning course that will be available from February 2017 onwards.

Those who were not selected for the first training can still be eligible for the next training and/or the call for proposals for the research grant. The next calls for applications will be announced via Facebook and on our website.

Online application for Community-Based Research training

The-main-square-of-Bishkek675AFEW (International) is organising a community-based research programme. The programme consists of several trainings and a small grants fund for community-based research projects. The programme is meant for communities in Eastern Europe and Central Asia (EECA) and is aimed to result in the submission of abstracts for the International AIDS Conference 2018, which will be held in Amsterdam.

Please find herewith the link for the application here. If you have more questions about the application, please email us at research@AFEW.nl.

The training will take place in Bishkek, Kyrgyzstan, on 8, 9 and 10 November 2016. This training is the first step in a community-based research programme.

We are looking for motivated participants from the EECA region with a keen interest, some experience, and familiarity with community-based research. We foresee to invite two participants per organisation: one decision maker and one research implementer. The training is free of charge.

Following the training, you will be able to access online training modules to further shape your research skills. On a later level, training participants are expected to fill in an application form for the community-based research fund. This call will be released towards the end of 2016.

We are now accepting applications to attend the training. The deadline for application is Friday 9 September 2016.

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