Cry for Access to Treatment for People Living with HIV in Russia

The event dedicated to the Day of Remembrance of People who Died from AIDS, Moscow, May 2015

Author: Anastasia Petrova, Russia

“Medicines for the treatment of HIV, hepatitis C, and tuberculosis are provided free of charge to all needy patients in Russia.” This phrase is the first thing we see on Pereboi.ru main page – the resource where people living with HIV in Russia can tell their stories about how they were refused treatment.

Professional patients

Pereboi.ru is one of the projects of the Patient Control – a public movement whose members are people living with HIV and other socially significant diseases, as well as their supporters. The movement has existed for seven years in Russia. The initiative group, not being an organization or legal entity, has grown into a professional community of patients who have risen to defend their rights.

In addition to direct actions, activists of the Patient Control monitor government procurement of antiretroviral therapy (ART), write complaints and make appeals to public authorities. Representatives of the community also work with pharmaceutical companies: one of the main obstacles to treatment is inflated prices for medicines.

Founded in autumn 2010, the movement’s goal is to ensure effective control of the provision of high-grade medical care and the improvement of quality of life for HIV positive people. Activists say that any person sharing their views can join them. The main concern on which activists are working is the disruptions in medical supplies for people living with HIV, hepatitis and tuberculosis in Russia.

Fighting with supply disruptions

“For more than six years there have been interruptions in medical supplies for the treatment of HIV/AIDS in Russia. Life-saving medicines, that have to be taken strictly by the clock and in a certain order are partially or completely lacking in AIDS centres,” activists are saying.

This situation is interconnected with repeated changes in the system of procurement of medicines for people living with HIV. The latest change is the transition to a centralized system in 2017. Before that, the medicines in regions were bought according to special schedules, and now the Ministry of Health of the Russian Federation is the responsible party. These changes have led to the slippages in the procurement schedule and serious supply disruptions this year.

The event by the Ministry of Health of the Russian Federation, Moscow, July 2013

At the moment, supply disruptions of medicines happen almost everywhere throughout the country. People living in different regions of Russia such as Nizhny Novgorod, Norilsk, Tomsk, Kostroma write messages to pereboi.ru almost every day. Only in 2016, the activists counted appeals from more than 30 cities. These cities are also situated in such prosperous areas as Moscow, the Leningrad and Moscow regions.

Last summer the activists of Patient Control facilitated the situation with interruptions in treatment of children and pregnant women in the AIDS centre near Moscow. 30 patients signed the petition after which the Federal Service for Surveillance in Healthcare conducted an unscheduled inspection at the AIDS centre near Moscow and in the regional Ministry of Health office.

In order to avoid the following situations, activists get updated on the formation of purchases for 2018 by raising the issue at a high authority level. On August 14, 2016 there was a meeting of patients with representatives of the Federal Service for Surveillance in Health Care and the Ministry of Health of the Russian Federation. The government informed activists about the expected additional financing in the amount of 4 billion rubles this year and the planned annual increase by 1.5 billion rubles in the budget for the purchase of medicines. However, according to the representatives of the movement this is not enough to solve the problem completely.

Improving quality

Side effects from the low-quality medicines is another issue patients are talking about. Due to the strong health issues that arise in response to therapy, people often abandon the existing treatment. A short list of the issues they face includes rash, kidney problems, lipodystrophy. It is difficult to get treatment replacement afterwards if the therapy scheme was changed according to medical or pseudo medical indications, because formally the therapy is still being provided.

Day prior to the meeting of the Commission on Vital and Essential Drugs (VED) on September 4, 2017 in Moscow Patient Control representatives addressed the Minister of Health of the Russian Federation. The request was to include VED in the list of contemporary drugs in 2018 for the treatment of HIV-infection and chronic hepatitis C. Following the meeting, the Commission made a decision to add six medications, four of them were also in the activists’ list. The Commission included two medicines for HIV infection treatment: dolutegravir, raltegravir for children and two for hepatitis C: dasabuvir/ombitasvir/paritaprevir/ritonavir and daclatasvir.

Activists are also working on the ways to achieve patient feedback in cases when ART was proven ineffective or had side effects. Patients along with the physicians will now be able to fill out an online form on the Federal Service for Surveillance in Health Care. This will help to improve the quality of medication control.

Treatment as prevention

The internationally recognized principle of treatment as prevention is one of the most effective and yet most underestimated ways to prevent the spread of HIV infection in Russia. The number of HIV infections in our country keeps growing and thus patients’ collaboration is extremely important.

At the Red Ribbon Award 2012 during AIDS 2012 in Washington, USA

The Patient Control movement is one of the communities in the Eastern European and Central Asian (EECA) countries dealing at a highly professional level with access to therapy of people living with HIV. SIMONA+ project is one of Patient Control initiatives aimed at systemic problem solving. This project studies access to medical and non-medical services for people living with HIV, as well as reacts to violations of patients’ rights by direct actions, press conferences and round-table discussions. Nowadays, SIMONA+ covers more than 13 entities of the Russian Federation. Its main goal is to improve the quality of HIV treatment and diagnostics, as well as to increase adherence among the representatives of key groups. Apart from serving patients’ interests, the project tries to minimize HIV spread among the general population.

The Patient Control projects are a community response to the epidemic. These projects consider the needs of people living with HIV and facilitate cooperation between specialists working in the AIDS control field. These merits have already been recognized once: at the 19th International AIDS Conference in Washington in 2012, the Patient Control initiative group was awarded the Red Ribbon Award for outstanding work concerning the AIDS epidemic. Promotion of such initiatives is declared as one of the leading goals for the 22nd International AIDS Conference, which will take place in Amsterdam next July. Representatives of the Patient Control movement plan to submit the report on their work in 2016-2018 to AIDS 2018.

90-90-90 Strategy was Discussed in Tajikistan

Civil sector representatives together with the heads of the AIDS prevention and control centers in Tajikistan worked out practical steps for the implementation of the voluntary counselling and testing (VCT) service in the activities of public organizations. They talked about this during the meeting National strategies of expanding access to HIV testing. Response measures for the implementation of UNAIDS strategy 90-90-90. Republican public organization AFEW Tajikistan shared its successes on September 6, talking about the work of its HIV voluntary counselling and rapid testing point in Qurghonteppa.

“Thanks to this meeting, now I have a vision of how to organize a VCT office in a public organization, where to start, what documents should be prepared and what services should be consulted beforehand. This meeting with its practical exercises, in my opinion, united us with the partners. This can influence the personal growth of each participant,” the director of Tajikistan Network of Women Living with HIV in Dushanbe Tahmina Haydarova is saying.

During the meeting, 50 representatives of state, public and international organizations from Gorno-Badakhshan Autonomous Region, Khatlon and Sughd Region, and the city of Dushanbe talked about the interaction of state and public organizations in providing integrated and coordinated services to key populations in the field of HIV, TB/HIV. They also got acquainted with the main provisions of new UNAIDS strategy 90-90-90, key activities of the National Program to Counteract the HIV/AIDS Epidemic in the Republic of Tajikistan for 2017-2020, and AFEW Tajikistan experience in integrating services and introducing VCT.

The meeting National strategies of expanding access to HIV testing. Response measures for the implementation of UNAIDS strategy 90x90x90 was held within Bridging the Gaps: Health and Rights for Key Populations project that is funded by the Dutch Ministry of Foreign Affairs.

Improving TB/HIV Prevention and Care in Kazakhstan

Kristina from Almaty, Kazakhstan was diagnosed with HIV when she was in prison. At first, the woman got scared because she did not know how to live with this diagnosis. Now the woman is the volunteer of the organisation ‘Doverie Plus.’ She advises girls on how to be adherent to the treatment, motivates to start the treatment, and conducts other various activities.

“My life was pretty hard until I met Alla and Roza from the fund ‘Doverie Plus.’ They explained me a lot and supported me. Before I met them, I did not know anything about antiretroviral therapy (ART) therapy, and how it affects HIV virus. They told me I had to take it, and I was taking it, but every day I took it in a different time, without knowing that I had to take it in the same time every day. Now I know that I have to have the regime with my medicine and I have to take it every day in the same time. I achieved a viral load of less than 500 copies. Before meeting Alla and Roza, I was often tired of my life. After our talks, I felt much better. I want to live, I am living, and I will be living,” Kristina says.

Public Fund ‘Doverie Plus’ is working within the project ‘Improved TB/HIV Prevention & Care – Building Models for the Future.’ The fourth year of the project is starting in October 2017. Launched three years ago, the project is aimed at establishing an effective partnership between public and non-public TB and HIV care providers in Almaty, Kazakhstan.

STOP TB partnership is established

“The project is unique in terms of the community involvement, strengthening, increasing capacity of community based NGOs, and building strong inter-sectorial collaboration in Almaty. All big achievements are built from little efforts. The little effort was done to improve the access to services for key populations on the city level and we succeeded,” the Executive Director of Public Foundation “AIDS Foundation East-West in Kazakhstan” Roman Dudnik is sharing. “We have a strong NGO Network, and it is linking with all existent service providers. In the end, all people in need have the possibility to get services related to HIV and TB. We plan to develop this approach further, and we want to increase the capacity and knowledge level of all stakeholders, including NGOs, state and private medical clinics. This project should become the best practice model for other cities of Kazakhstan and our neighboring countries.”

The project ‘Improved TB/HIV Prevention & Care – Building Models for the Future’ is aimed at increasing government recognition of the role and quality of the non-public sector for TB/HIV service delivery, providing TB/HIV services according to agreed standards, encouraging civil society to be the active participant in monitoring quality of services, ensuring that clients have affordable options and trust in service provision, stronger linkages between government, project and civil society.

“During three years of our work, we achieved understanding of the integrated TB/HIV care model among key stakeholders and gained strong political commitment and support from healthcare department of Almaty through establishment of the platform for partners’ dialogue,” a project manager of AFEW Kazakhstan Kristina Zhorayeva is saying. “We also established STOP TB partnership for the effective coordination and collaboration between all partners working in TB and HIV areas. Private clinics are now integrated with TB and project services, and thus the number of private clinics that are eligible to provide tuberculosis care is increasing. Besides, healthcare authorities of Almaty recognized the importance of project interventions directed to strengthening the role of local NGOs in provision of TB and HIV care. With their understanding, we have created the working group on HIV and TB.”

Created first NGO in the city for TB patients

One of the biggest achievements of the project is the creation of community based NGO. It is the first NGO in Almaty city aiming its activity on TB patients and their environment. Their start up showed successful work on self-support group and client management for TB patients. The Public Foundation ‘Sanat Alemi’ has the following activities: social mobilization, advocacy, communication of people affected by tuberculosis, TB/HIV, AIDS and other socially significant diseases, reducing stigma, discrimination and develop commitment to effective prevention methods, diagnostic, drug management and treatment.

The founders of ‘Sanat Alemi’ are people who were successfully cured of multi-drug-resistant tuberculosis and extensively drug-resistant TB. In addition, one of the founders is an independent expert on TB, has extensive experience in treatment, drug supply, monitoring and organization of TB-based activities nationally.

“The social support for tuberculosis patients plays a key role in increasing adherence to the treatment. The success in treatment is possible with the combination of trust, human relationships and the support of professionals, such as a psychologist and social worker,” the director of public foundation Sanat Alemi Roza Idrisova is saying.

The project ‘Improved TB/HIV Prevention & Care – Building Models for the Future’ is implemented with the support from the Dutch Government (DGIS), KNCV and its partners, AFEW International, HIVOS and PharmAccess.

Sex Work in Ukraine: Cancelling the Fines and Placing Condomats at Bus Stops Could Halt HIV Spread

Nataliya Isaeva is protesting and advocates for the fast decriminalization of sex work

Author: Yana Kazmirenko, Ukraine

Civil society NGO activists in Ukraine are developing a new legislation on sex work. According to them, eliminating the fines could help increasing access to medical care for women and men involved in sex work – a profession vulnerable to HIV.

“Sex workers try not to have too many condoms with them. If there is a police raid, discovering condoms and recording it in a protocol automatically means detention for sex work,” says Nataliya Isaeva, the head of the All-Ukrainian Charity Organisation “Legalife-Ukraine”, explaining the need to finally decriminalize sex work. Nataliya has been a sex worker since she was 16. Today, after being a sex worker for 15 years, she has HIV-positive status, a family, two healthy children and projects that offer support to her ex-colleagues.

Hostages and victims of violence

Even administrative charges for sex work that are still in force in Ukraine, make sex workers vulnerable to police violence. According to the Article 181-1, of the Ukraine’s Administrative Code, commercial sex is an administrative offence punishable by the fine of 15 tax-exempt minimum wages (UAH 225 or €7.5) as a maximum penalty.

“Today decriminalization is more important than legalization. Decriminalization would create an environment where sex workers could go to police to complain of violent actions against them,” Nataliya clarifies.

Preparing for the 22nd International AIDS Conference to be held in Amsterdam in 2018, “Legalife” activists have conducted a research on the types of violence against sex workers in Ukraine. They surveyed 175 women and anticipate high levels of “truthful answers”, given that the women were interviewed by activists who had been involved in sex work.

“Preliminary results show high rates of psychological violence against sex workers from police. Many have to deal with unwarranted aggression from their clients: people in passing cars throw bottles at them, and there was one case when they cut a rude word on a woman’s breast,” Nataliya is sharing.

Healthy women work longer

The Ministry of Ukraine’s Center for Public Health estimates the number of sex workers in the country at around 80,000. Some 7.3% of them have been diagnosed with HIV. Administrative liability drives sex workers underground and makes them conceal their occupation, even from doctors.

“Sex workers are usually not the ones to go and have their first HIV test on their own initiative. Decriminalization forms the prerequisite for medical screening and offering help to those in need,” Sergey Kharitonov, the head of HIV prevention and access to treatment projects for sex workers, NGO Convictus Ukraine is saying. Nataliya Isaeva, however, thinks that sex workers do try to take care of their health and contribute much less to the spread of HIV as opposed to what researchers believe.

“Women professionally involved in sex work prefer to use condoms, get tested and make sure they are in good health. The healthier they are, the longer they can work,” Nataliya explains.

Discovering status means banning from pick-up points

Experts from Convictus Ukraine have surveyed sex workers to find out what they do when they learn that they have HIV. Most of them leave work for a while, usually going back home. The story of Polina (34) from Kyiv confirms this. After she discovered her HIV-positive status in 2014, she went home to her parents for the first time in many years. Polina started using injecting drugs when she was 16. After the 9th grade, she travelled to Moscow, hoping to earn good money, and ended up in sex work through the advice from her friend. Amphetamine, heroin, dope – she could just almost write a manual on drugs. In early 2000s, she found out she had Hepatitis C, but she cannot remember when exactly she was diagnosed. After discovering her status, she applied for the opiate substitution therapy.

After learning about her HIV status, Polina switched to opioid substitution therapy

“My body gets ugly from all the injections, but my look is my income. Thus, with a doctor’s paper certifying substance use, I applied for a paid substitution therapy service. It costs UAH 1600 per month. I saved up some money, and I also want to get Hepatitis C therapy,” Polina is saying.

After she was diagnosed with HIV, Polina started to take more care about her health. “I always use a condom, do not go to saunas for groups, etc.,” she says.

According to Polina, only her mother, partner and son know about her status. Her son lives with his grandparents in Russia. Polina hopes that opiate substitution therapy will “wise her up”, help her quit drugs and find her six-year-old daughter whom she abandoned after birth.

Polina’s colleagues find it hard to establish an alternative source of income, and that is why they go back to where they were. Many of them are afraid of undergoing further testing, fearing disapproval from doctors and friends in case “God forbid, someone finds out”.

“Most sex workers suffer from self-stigma which prevents them from accepting their HIV status. If they find out one of them is HIV-positive, the colleagues try to remove this person from the pick-up point by any means,” Sergey Kharitonov says.

New law under development

Activists admit that there is little chance for changing the status of sex work in Ukraine. Back in 2015, decriminalization attempts failed. Andrey Nemirovskiy, the Deputy of the Verkhovna Rada of Ukraine (Samopomich party), submitted and, following a lot of buzz in the media, revoked the legislation regulating sex work in Ukraine. The project failed, not least because of the influence of the Orthodox church, whose vast congregation could have cut off electorate support for the party.

New legislation is developed, but, according to Nataliya Isayeva, it will only be submitted after allies are found. Currently activists are conducting advocacy work among female deputies and developing amendments to other laws.

The project manager at NGO Convictus Ukraine Yulia Tsarevskaya believes that apart from the new law, it is possible to reduce the spread of HIV among sex workers with comprehensive programming. For example, the service of condom and lubricant distribution could be replaced by placing condomats in all cities (at the bus stops and metro stations.)

Youth is Invited to Lead the Amsterdam Youth Force at AIDS 2018

Nadiia Dubchak

The Youth Force for AIDS 2018 is looking for young people and youth organisations. Nadiia Dubchak, from Kyiv, Ukraine, is the co-chair of the Youth Force of AIDS 2018 Conference, and she is representing Eastern Europe and Central Asia (EECA). Meanwhile, Nadiia is looking for active people between the ages of 15 – 26 to help found and lead the Amsterdam Youth Force (AYF). AFEW International is supporting this initiative.

The engagement of young people in the International AIDS Conference in Amsterdam next year is fundamental. Every International AIDS Conference, a group of young people and youth organisations come together to create the Youth Force. Young people are essential in creating a response to HIV and AIDS that will reach the end of the epidemic. Young people are also people living with HIV, sex workers, people who use drugs, LGBTQI and many other groups that are key in creating a future without HIV and AIDS.

“I strongly hope that, as youth activists and leaders, we will act together, on behalf of the world teen and youth community, and make a significant contribution to AIDS 2018. Indeed, I would be thankful for your support and honored to convey your ideas to the Conference Coordination Committee prior to and during the Conference. We are now building up the Youth Force working groups which would guarantee an excellent performance and efficiency of AYF in different dimensions of AIDS 2018. We kindly invite youth-focused activists and young leaders from all over the world to join us,” Nadiia Dubchak is saying.

How to join

To become a part of AYF, please like their Facebook page to stay in touch and share info about their activities online. To join a working group, please write an email to amsterdamyouthforce@gmail.com including your basic contact details and a short motivation note. Also, you can use this email to pose any questions regarding AYF and your personal involvement. For those interested in contributing to AYF, you can add Nadiia Dubchak on Facebook.

Scientific Tracks and Conference Objectives of AIDS 2018

The 22nd International AIDS Conference that will take place in Amsterdam, the Netherlands on 23-27 July, 2018, announces its scientific tracks and conference objectives.

Scientific Tracks

AIDS 2018 Conference will welcome submission of abstracts for original contribution to the field in the following scientific tracks:

Track A: Basic and Translational Research.

Track B: Clinical Research.

Track C: Epidemiology and Prevention Research.

Track D: Social and Political Research, Law, Policy and Human Rights.

Track E: Implementation Research, Economics, Systems and Synergies with other Health and Development Sectors.

AIDS 2018 Conference Objectives

  • Convene the world’s experts to advance knowledge about HIV, present new research findings, and promote and enhance global scientific and community collaborations in synergy with other health and development sectors.
  • Promote human rights based and evidence-informed HIV responses that are tailored to the needs of particularly vulnerable communities, including people living with HIV, displaced populations, men who have sex with men, people in closed settings, people who use drugs, sex workers, transgender people, women and girls and young people.
  • Activate and galvanize political commitment and accountability among governments, donors, private sector and civil society for an inclusive, sustainable and adequately financed, multi-sectoral, integrated response to HIV and associated coinfections and comorbidities.
  • Address gaps in and highlight the critical role of HIV prevention, in particular among young people in all their diversity and its integration in a range of health care settings.
  • Spotlight the state of the epidemic and the HIV response in Eastern Europe and Central Asia with a focus on investments, structural determinants and services.

The registration for the conference opens on December 1, 2017. More information about abstracts and submissions will be available in the coming months.

Kazakh Beauties Played Football for the Sake of Fighting with AIDS

Many students, young workers and musicians decided to check their HIV status

Author: Marina Maximova, Kazakhstan

Football, rock, celebrities! Youth initiative called #ЖОКСПИД2030 (#NOAIDS2030) is taking place in Kazakhstan. The founders of this initiative are the Republican AIDS Centre, the Central Asian Association of People Living with HIV (PLH), and the Kazakh Union of people living with HIV.

“With this #ЖОКСПИД2030 initiative, we want to save the memory of those who died from the epidemic. We want to draw the attention of public and youth in particular to the deaths, stigma and discrimination of people living with HIV. We want to give an opportunity to think about the problem that may affect anyone. This is why people should take responsibility for their health and the health of their close ones,” says Nurali Amanzholov, the president of the Central Asian Association of people living with HIV and Kazakh Union of people living with HIV.

Beauties on… the football field

The initiative started in May 2017 on the International AIDS Candlelight Memorial with a mini-football blitz tournament in Almaty. The members of the team were not professional sportsmen and muscular men, but delicate and the most beautiful girls in the country – the finalists of the beauty contests, popular singers and journalists. However, girls’ mentors were real football professionals, including sportsman-composer Abdulkarim Karimov and renowned players Zharko Markovich and Bauyrzhan Turysbek from Kayrat team.

Most beautiful girls in the country – the finalists of the beauty contests, popular singers and journalists – played football during the event

Beauty does not only heal, but also attacks. Girls played desperately, boldly, with an excitement, no one wanted to give in the victory. Neither spoiled makeup, nor broken fingernails, or even injured knees could get the girls to stop playing even for a minute. Women’s football is beautiful and strong. This was exactly what men, who liked the tournament, thought about it.

“Girls played dramatically and proved that they can play this manly game not worse than guys. I especially noted the fearless goalkeepers,” said Abdulkarim Karimov, who could not keep his emotions and sympathies to himself.

In this stubborn struggle, the team of journalists won the first place; show-business representatives placed the second, “Miss Almaty” and “Miss Kazakhstan” teams placed the third.

Media is everywhere

“#ЖОКСПИД2030 initiative is yet another opportunity to demonstrate the readiness and the will to counteract the future spread of HIV infection. We can stop and even reverse the epidemic with a set of measures: prophylaxis, providing access to treatment for all who need it, fighting stigma, and, of course, the active involvement of public attention to the problem of HIV infection,” Bauyrzhan Bayserkin, the CEO of the Republican Center for AIDS Prevention and Control notes.

#ЖОКСПИД2030 initiative is another opportunity to demonstrate the readiness and the will to counteract the future spread of HIV infection

It will not be possible to attract public attention without media. Therefore, some participants of the initiative were journalists. Media employees were on the training in Astana where they were taught by media trainers and experts about professional media coverage on HIV topics: the usage of correct terminology, interviewing ethics of people living with HIV, and selecting actual informational materials. Participants received a lot of important information from volunteers and outreach-employees who provide legal and social support to people living with HIV and drug users.

Practically a quarter of all HIV infection cases are infected young people aged 20-29. What should the prophylaxis for this age group be like, so that it would not leave anybody indifferent and eventually stop the epidemic spread? This important topic will be discussed on the 22nd International AIDS 2018 Conference in Amsterdam.

Rock songs on dombra

Immortal songs of Victor Tsoi – 80s rock legend – sounded in new adaptation on the musician’s birthday (the idol of millions would have been 55). It was also the anniversary of the “Needle” movie made in Almaty. The performers were not professionals, but amateurs. However, this fact did not lower the emotional heat and expression. Victor Tsoi’s greatest hits were performed with the accompaniment of guitars, the orchestra and even in the genre of opera. Rock songs played on Kazakh national instrument dombra was the most spectacular performance.

Tsoi’s hits were performed Rock songs on Kazakh national instrument dombra

In this creative and positive atmosphere, the organizers of the republican initiative #ЖОКСПИД2030 introduced a commissar to the participants. Ali Okapov, the popular singer and musician has become the commissary.

“To be a commissary on such an important social campaign is a great honour for me. As well as to promote healthy lifestyle ideology among young people. Future starts today. These are not just words. The future belongs to young people, but we should build it now, and it is definitely the future without HIV!” Ali Okapov is saying.

“Almaty – the city without HIV” is another recent event within the framework of the initiative. It was organized by Almaty HIV Centre, Public Foundation «AIDS Foundation East-West in Kazakhstan», Kazakh Union of people living with HIV, social foundation “Doverie Plus” (“Trust Plus”.) People living with HIV told their stories in the atmosphere of openness and trust. Young people took part in the quiz on the knowledge of HIV infection. The doctors informed about the preventive measures. The event ended in massive HIV express-testing. Many students, young workers and musicians decided to check their HIV status. The live queue did not even pay attention to the intense southern sunlight.

“Kyianka+”: Understanding the Lives of Ukrainian Women Living with HIV

Author: Yana Kazmirenko, Ukraine

Vera Varyga (in the center) is often sharing the success of Kyianka+

Members of “Kyianka+” self-help group conduct regular meetings to exchange positive emotions, share success stories and learn how to resist psychological abuse.

Vera Varyga, leader and founder of the “Kyianka+” self-help group for women living with HIV, receives at least three anonymous phone calls a day to their hotline phone number +38 (067) 239 69 36 from women who have just learned about their HIV status. This hotline number is promoted at the HIV testing locations. Vera’s words may have a significant influence on the future lives of these women and their ability to accept their status and move on.

“Kyianka+” group, operating with support from ICF “AIDS Foundation East-West” (AFEW-Ukraine), was created three years ago, and has already helped more than 150 women. Women living with HIV attend monthly meetings, participate in master classes and get psychological counselling.

“It was very difficult for me to accept my HIV status. I received my first psychological assistance from another woman living with HIV only two years after I was diagnosed. During my first self-help group session, I cried a lot, but women supported me, believed in me and showed me that I am not an outcast. Now, in my groups, I see other girls crying like I was,” says Vera.

In the district hospital of Kharkiv region, Vera had to deal with cruel and unfriendly attitude from staff, which was typical of the Ukrainian provincial medical facilities back in the early 2000s. People diagnosed with HIV were perceived as socially dangerous elements, almost criminals.

Today Vera is a role model – a self-assured woman, a mother of two healthy boys, a beloved wife. She is very friendly, laughs a lot and loves her coral lipstick.

Difficulty of disclosure

At “Kyianka+” sessions, women share their concerns and success stories, trying to find their own way to get on with their lives.

“For example, we conduct role plays during which we model HIV-status disclosure to different people: mothers, partners, children, bosses or health workers. Mothers usually face the most difficult task of telling their sons or daughters about their status. Preparation for such disclosure takes more than a year, and we recommend having a psychologist present: it is hard for a mother not to burst out crying in such a situation,” Vera explains.

Vera is proud of the atmosphere in her group: all the girls get along well, not least because of the set of rules that they developed together:

  1. Confidentiality: nothing discussed in the group can be shared outside of the group.
  2. Attendance is not allowed for women who currently use drugs – they have other values. If they succeed in quitting – they are always welcome.
  3. No criticizing: all women are free to express their opinions.
  4. No medical advice or recommendations: treatment can only be prescribed by a doctor.
  5. The group is for mutual support: you get help and you give help.

All responsibility is on her

Men and women react differently when they hear about HIV-positive status. Men usually need a clear plan, while women often feel panic and become depressed. In our culture, the challenges of solving health problems and thinking about the future of the family often fall upon women.

“Our task is to teach a woman to love and respect herself, to find time for treatment and to make her health a priority. It is like an emergency situation in a plane: first put on your mask, and then put a mask on your child,” Vera says.

Traditions are another area of concern for Ukrainian women: what will the parents say? How will children, neighbours, colleagues react? Is my husband going to leave me? Women have to deal with stigma: everything they had thought about HIV before becomes part of their personal story.

Teaching to share and to help

Anna Lilina, a 30-year-old woman from Kyiv, was diagnosed with HIV when she was three months’ pregnant. Doctors’ prescriptions saved her daughter from getting HIV. Back in the municipal AIDS Center, Anna learned about the self-help group, but she only went there later, when in trouble. She and her daughter were thrown on the street by her boyfriend, whom she had met at the hospital.

Anna Lilina took part in a photo shoot that raised awareness about violence

“My relatives gave me money to pay for the first and last months of the apartment rent. He suggested I moved in with him and spent the money to renovate his house and fix his car. When the money was gone, he forced me out into the street in winter,” Anna says.

Anna needed support and sympathy. Therefore, two years ago, she came to the self-help group.

“After every self-help group session, I get so much energy that it feels I have wings and I can fly, but with every stressful situation, I return to the ground, and feel depressed,” Anna confesses.

It is not only positive impressions that women share at the group. They also started exchanging clothes, baby formulas, information about babysitters and apartments for rent, vacancies and tickets to theatres.

Professional training courses in manicure, floristry, office-management and the English language help these women to change their lives and start making an income. Master classes are also an important part of the therapy, through which women do not only develop new skills and get a profession, but also make steps towards opening up.

Anna remembers how she tried to convince a guy who infected her to start taking antiretroviral therapy. He, however, was saying that AIDS is an invention of American doctors who want to make money. He did start taking the therapy, but only after he had fainted and had to be hospitalized.

“I do not mind anymore that I have HIV. I have met real friends and learned how to be happy about simple things. Volunteer work and organizing help for people in need – this is my new talent, and in the future I would like to become a social worker,” Anna shares.

The number of women in need of Anya and Vera’s help will only increase, as in April 2016 Kyiv joined the Fast-Track Cities initiative to accelerate and scale-up AIDS response, one of the goals of which to ensure that by 2020 ninety per cent of people living with HIV know their status and receive therapy.

Who needs you?

Group master class on felting toys

“Kyianka+” members have a secret Facebook chat to share their thoughts and concerns. The online group allows participants to interfere and help each other in critical situations. Among the most discussed are postings about psychological abuse, especially in discordant couples with an HIV-positive woman and HIV-negative man.

Vera says that her clients often have difficulties with setting the boundaries and counteracting manipulation. If a woman does not make it clear that her status is not a humiliation, her partner’s manipulative actions may reach new levels. For example, he may decide to take charge of the family budget.

“I was stunned by the stories of our clients. To avoid a break-up, one woman’s husband was threatening his wife to tell everyone about her status. Another man said he would disclose this information at their son’s school. In another family, a husband and wife had not invested time to discuss the situation, and once, during a picnic with close friends, they had a fight. The man got drunk and yelled: who needs you now, you AIDS-ridden cow? This story echoed deeply in me – back in the day when I was pregnant, a doctor yelled at me in a similar way: you are ridden with AIDS, and you still want to have a baby?” Vera shares her emotions.

She is certain that with this one phrase that man said everything he thought about his partner and their relations. It is possible to forgive him afterwards, but it is not possible to trust him again. This breaks up the family, and all his reassurances and pleads for forgiveness are in vain – the couple had to discuss the situation earlier. After the picnic the couple broke up, and now they are undergoing therapy.

The Facebook post about blackmailing had a lot of responses: the participants shared links to study psychological tricks of manipulators, and the women who had similar experiences helped others with advice and recommendations on how to stand firm and raise their self-esteem.

Vera is very happy to see this meaningful participation of women. She hopes that her clients will eventually leave their worries behind and start living full lives, and that the most active of them will help organize such groups in every Ukrainian city.

AFEW is Looking for Digital Producers

AFEW International is looking for an organisation or individuals to produce a series of materials on knowledge and skills required for successful preparation for AIDS 2018, including but not limited to creating conference profile system, abstract development, scholarship applications submission, applying for workshops, taking part in the Global Village and Youth Program etc.

AFEW International with the support of the Dutch Ministry of Foreign Affairs is implementing a range of activities to empower CBOs, NGOs, activists, policy makers, stakeholders, researchers and clinicians from Eastern Europe and Central Asia (EECA) region to take part in the 22nd International AIDS Conference 2018 in Amsterdam AIDS 2018.

There are several barriers for the delegates from EECA region in their participation in the AIDS conferences: lack of skills on scientific writing and abstract development, costs of participation, and language barrier.

Because of these barriers, the delegates from EECA region have traditionally been disproportionally underrepresented at the AIDS conferences since its inception.

AFEW International is implementing several strategies to support delegates from EEAC region to meaningfully participate in AIDS2018.  Among them webinars and trainings on community-based participatory research for NGOs from EECA, free online resources on writing and submitting abstracts developed by AFEW International and Health[e]Foundation, and newsletters with information from the EECA region and the Netherlands on the preparation for AIDS 2018.

The application deadline is 31st August. More details about the procedure and requirements can be found here.

AFEW Tajikistan’s Offers the Range of Unique Services

Success with harm reduction has recently been achieved in Tajikistan. HIV epidemic amongst injecting drug users also seems to stabilize and even decline. Unfortunately, HIV is still increasing as now it also enters wider community around people who use drugs (PUD) and other key populations. Sexual transmission of HIV is rising, and women is the most vulnerable group in this new wave of HIV infections. Besides, in Tajikistan there are other health related issues with tuberculosis, hepatitis and sexual and reproductive health. These are the observations of AFEW International’s director of the programs Janine Wildschut who visited Tajikistan last week to monitor the work of ‘Bridging the Gaps: health and rights for key popualtions’ programme.

Empowering women is the aim

Within ‘Bridging the Gaps’ programme, AFEW Tajikistan with its partners are focusing on service delivery mainly for female drug users, female prisoners, wives and spouses of PUD. Through the Comprehensive Service Delivery Centre in Qurghonteppa, AFEW Tajikistan is delivering a broad range of services for vulnerable groups, where all groups are welcome.

“We face the issues with health and with the rights of individuals. We want to empower women to take care about themselves, and it is very important to support them in speaking out for their interest and needs,” Janine is saying. “AFEW Tajikistan offers the unique opportunity to have HIV test on the base of the NGO. They also offer wider psycho social support and client management for women based on their needs.”

In Tajikistan Janine also conducted assessment amongst PUD that have labor migration experience. With the support of Open Society Institute Tajikistan, AFEW Tajikistan is supporting labour migrating women returnees with client management. During the focus groups, different women were asked about their needs, quality of services they received, ideas for further improvements and their lives.

Starting vocational training

Janine Wildschut also conducted interviews with NGO partners about the situation for civil society in Tajikistan, spoke with governmental partners within the health department and penitentiary system and worked with AFEW Tajikistan staff on the development and strategies within the next years of the ‘Bridging the Gaps’ programme.

“During the focus group, opioid substitution therapy (OST) clients expressed the uniqueness of the service centre in Qurghonteppa. The biggest challenge for people is to travel every day to the OST point to pick up their methadone, since some of them live quite far and have little resources to spend on transportation,” Janine noticed. “Located nearby, AFEW branch is of big help since they can, after picking up OST, go for health checkup, self-support group or use some other support. Nowadays they are experiencing less discrimination and not such bad treatment of public health facilities because with the AFEW partner network and the AFEW referral vouchers, the attitude and climate in the health facilities in Khatlon region improved a lot. Besides, the support of social workers decreased the level of self-stigma which makes people less fearful to visit  public health services.”

The biggest challenge people still face is the lack of work and education. For that reason, AFEW Tajikistan is considering the option of starting vocational training and enterprise. These plans will be developed in collaboration with experts and micro credit organizations that are part of the partner network.