AFEW Builds Models for the Future with Improved TB/HIV Care

AFEW, Hivos and PharmAccess and KNCV representatives after the presentation on the Dutch congress ‘Soa.Hiv.Seks’

The ‘Improved TB/HIV Prevention & Care – Building Models for the Future’ project was presented during the Dutch National Congress ‘Soa.Hiv.Seks’ on 1 December 2017 in Amsterdam, the Netherlands. Three working models from Kazakhstan, the Philippines, and Nigeria implemented by AFEW, Hivos and PharmAccess with KNCV Tuberculosis Foundation as the lead agency were shown to the Congress audience.

HIV and TB are two of the biggest public health threats in the world. Mounting challenges associated with these mutually reinforcing diseases are both medical and socio-political. In the efforts to address many of the common challenges, AFEW, HIVOS, PharmAccess and KNCV, with support from the Dutch Ministry of Foreign Affairs, collaborate in different parts of the world via the ‘Improved TB/HIV prevention and care-building models for the future’ alliance to jointly design and pilot innovative models of cooperation between the public, private and community sectors involved in the fight against HIV and TB, to find new ways of ensuring and expanding affordable, patient-centred and high quality access to care for key affected populations.

“After the project has started in Almaty, Kazakhstan, we can observe positive changes. A patient has information about good quality care, knows where to go for treatment and support, and has a choice in seeking care in the public sector, private sector and civil society,” the executive director of AFEW International Anke van Dam is saying. “Self-support groups and client management for TB patients are being organized and the HIV and TB working group is supported by the head of the Almaty City Health Department.”

Private clinics in Kazakhstan are now engaged in the public healthcare sector. They are integrated into the national monitoring and evaluation system for public/non-public TB/HIV care provision in Almaty city.

With Tuberculosis, it is Important to Take Medicine and Believe in Yourself

Sultanmurat from Kazakhstan wanted to get cured of tuberculosis no matter what but the treatment was difficult

Sanat Alemi is one of the civil society organizations (CSOs) supported by the Improved TB/HIV prevention & care – Building models for the future project which gives support to TB patients and their relatives. Founded in 2016 in Almaty, Kazakhstan by a group of ex multidrug-resistant or extensively drug-resistant TB patients, they quickly showed successes through their established self-support groups as well as one-to-one TB patient support. Sanat Alemi is also implementing several community-based activities such as social mobilization, advocacy, and communication to improve TB literacy among people affected by TB, TB/HIV, AIDS and other socially significant diseases (drug abuse, alcoholism, etc), aiming at reducing stigma, discrimination.

Success is possible with trust and professionals

“The social support for TB 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 current director of Sanat Alemi Roza Idrisova is saying.

A TB patient and client of Sanat Alemi Sultanmurat did not know anything about tuberculosis, except that it was a dangerous disease.

“I was horrified when I heard I had TB. I could not even imagine how I got it. I started coughing blood which was so scary, but I did not suspect that it could be TB,” he says. “I thought that the pain was caused by my liver or another internal organ. I told about this to my mother, as she is my closest relative. The other relatives reacted with understanding and this helped me a lot.”

What does not kill us makes us stronger

Sultanmurat wanted to get cured no matter what but the treatment was difficult. In the beginning, he could not tolerate the drugs, and he developed allergies.

“I struggled and tried not to miss a single day of medications and injections. I heard about Sanat Alemi from other patients and started to attend their self-support groups. Receiving support from other patients and social workers during treatment is of great help and being able to join trainings and meetings with different specialists is very useful and gives a lot of interesting information. I had the opportunity to ask questions that I had for a long time. I believe that in the future Sanat Alemi will keep the same spirit and will support many other TB patients,” Sultanmurat says. “TB completely changed my life. I started to appreciate life and learned to tolerate the sickness. I started to appreciate and love my relatives even more as they proved once again that they are there for me and that they would never give up on me during difficult times.”

Sultanmurat would like to say to other TB patients that this disease is curable like many other diseases. The most important thing is to follow the treatment, take pills without interruption, eat well and do sports. It is also important to be friendly, always and everywhere provide support and assistance to other people with TB. The most important thing is to believe in the best, in your recovery and do not forget that what does not kill us makes us stronger.

HIV Prevention in Key Populations: an Overview of Service-Delivery Projects in Russia

The Blue Bus mobile prevention unit, the bus of hope

Author: Anastasia Petrova, Russia

According to the World Health Organization, about half of new HIV cases occur in key populations: injecting drug users, men having sex with men and sex workers. Social stigma, violation of human rights, lack of access to the necessary services create barriers to protection of health for millions of Russian citizens. That being said, providing care to people with an HIV-positive status and those who are at risk of infection is an essential measure to safeguard health of the whole nation. By implementing service-delivery projects for key groups, non-governmental organizations play an important role in preventing the spread of the HIV epidemic both in the communities and among the general population.

The bus of hope

The Blue Bus mobile prevention unit, engaging clients in service provision

The Blue Bus of the Humanitarian Action Foundation is the first mobile prevention unit for drug users. In 2017, the project celebrates its anniversary: 20 years ago, the Blue Bus started its first journey in St. Petersburg.

Throughout these 20 years, Humanitarian Action has been true to its principles of helping those most vulnerable to the HIV epidemic. Many clients have double or even triple diagnosis: HIV, tuberculosis, hepatitis B and C, and addiction to psychoactive substances.

People are referred to service-provision programs through street outreach, mobile units and stationary needle exchange centers. Peer counsellors provide motivational counselling, assist with hospitalization to specialized medical institutions and follow-up their clients to increase retention in treatment programs.

The Blue Bus mobile prevention unit, distribution of materials, motivational counselling

Bus workers distribute sterile syringes, needles, water for injections, alcohol swabs, cotton balls, bandages, vitamins, vein ointment, naloxone, etc. People who use services are not always ready to change their behavior just like that. Talking to the project staff, they get important information on how to reduce infection risks and protect their health.

For most clients, the Blue Bus is the only safe place where they are treated with respect and understanding, and the only possibility to take a rapid test, receive primary medical counselling, get access to HIV and TB testing and treatment, be referred to public institutions and learn how to protect human rights. The team of the Blue Bus proudly values these trustful relationships between project staff and clients that have been built over the years of program implementation.

Dialogue between equals

Outreach work in the Cabaret bar

NGO Positive Dialogue is one of the oldest HIV-service organizations in St. Petersburg. Since its establishment in 1996, Positive Dialogue has gained substantial experience in working with key populations. In July 2015, the organization launched HIV prevention projects for closed population groups: men having sex with men (the Positive Dialogue project) and sex workers (the Silver Rose project). Both projects are community-driven, with the main goals to promote safer sex practices among MSM and SWs, increase access to services, including HIV/STI testing, uphold human rights, strengthen communities and counteract stigma.

The outreach team of the Positive Dialogue project conducts weekly field work in the night clubs visited by MSM and the LGBT community. The clients talk to peer counsellors and ask questions about HIV and other STIs, learn about pre- and post-exposure prophylaxis, receive condoms and lubricants.

Outreach work in the Priscilla club

The Silver Rose staff members provide counselling for sex workers in their office and conduct outreach work in the local saloons and street sex work areas. The project helps the girls preserve their health and human rights, protect themselves against violence, receive contraceptives, get tested for HIV and get referrals to trusted doctors. Peer counsellors also provide psychological support and involve sex workers in client management programs.

Training on how to use a female condom

Legal components make up an important aspect of the project’s work – the so-called “street lawyers” trained by the project provide legal aid and support in cases of violations of MSM/LGBT and SWs rights. Project clients take part in educational trainings and seminars.

Particular attention is devoted to community development and mobilization, to encourage community-driven HIV responses. Project activists organize campaigns and round table discussions aimed at overcoming societal stigma.

Women plus

Social support center for women, pre-test counselling

HIV-positive women are the focus of one of the projects run by EVA Association. In October 2017, a social support center for women affected by HIV will be launched by EVA – a low-threshold service offering comprehensive individual assistance to HIV-positive women in crisis situations.

The project team unites specialists with various experiences: peer counsellors, client management officers, lawyers, psychologists. Clients will be offered counselling, rapid HIV testing with pre- and post-test counselling, and individual management of each case. Women will be able to obtain contraceptives (condoms) here and take part in self-help group sessions for women living with HIV and their family members.

Social support center for women, rapid testing for HIV

Experienced specialists working in EVA will do their best to make the center as client-friendly and as responsive to clients’ needs as possible – for example, by allowing clients to bring their children, organizing distribution of clothes for women and kids, giving out hygiene kits. EVA collaborates with the municipal public services and socially oriented NGOs, which will improve activities aimed at informing women about the existing support services, providing access to various specialists and representing women in these institutions.

The center will give special attention to the prevention of violence and dependent and co-dependent behaviours. It is pilot project, unique for the region, with a focus of preventing negative social consequences of HIV among women.

Social support center for women

Prevention projects for vulnerable groups in Russia were launched 20 years ago by our western colleagues. However, international funding for these and other social projects has been significantly reduced. Unique low-threshold HIV prevention programs are becoming as vulnerable as their clients. Some organizations manage to secure financial support from the government. Others try to change their structure. We would like to believe that projects that help thousands of people representing very closed populations to protect their health will not become extinct in Russia.

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.

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.

The Need for a European Union Communication and Action Plan for HIV, TB and Viral Hepatitis

Author: Anke van Dam, AFEW International

For a couple of years, European civil society organisations advocate for a new European Communication and Action Plan for HIV. In the World Health Organisation, new HIV diagnosed infections in European region increased by 76%. These infections more than doubled in Eastern Europe and Central Asia (EECA) from 2005 to 2014. The whole European region accounted for 153 000 reported new infections in 2015 (ECDC 2017). The cumulative number of diagnosed infections in the European region increased to 2,003,674, which includes 992,297 cases reported to the joint ECDC/WHO surveillance database and 1,011,377 infections diagnosed in Russia, as reported by the Russian Federal AIDS Center.

Co-infection in the EECA region

According to ECDC monitoring and the WHO Europe HIV action plan  adopted in September 2016, these underline the high rate of tuberculosis (TB) and hepatitis B and C coinfection among people who live with HIV (PLHIV). In 2014, TB was the most common AIDS-defining illness in the eastern part of the region.

Of the estimated 2.3 million PLHIV who are co-infected with hepatitis C virus globally, 27% are living in the EECA region. An estimated 83% of HIV-positive people who inject drugs live with hepatitis C in the eastern part of the region.

Plan was prolonged

The European Union had a Communication ‘Combating HIV/AIDS in the European Union and neighbouring countries, 2009–2013’ and its associated Action Plan.

The overarching objectives of the Communication were to reduce the number of new HIV infections in all European countries by 2013, to improve access to prevention, treatment, care and support, and to improve the quality of life of people living with, affected by, or most vulnerable to HIV/AIDS in the EU and neighbouring countries. This Plan has been prolonged for another three years. It was followed up with a Commission Staff Working Document: ‘Action Plan on HIV/AIDS in the EU and neighbouring countries: 2014-2016.’’

Already during the period of the prolongation and for three years, the European civil society organisations, including AFEW International, that work in the field of HIV, are advocating for the new communication and action plan. So far without success, despite the fact that according to the evaluation, the Communication and its Action Plan were seen by stakeholders to have provided the necessary stimulus, continuous pressure and leverage for various stakeholders to advocate for and take actions against HIV/AIDS in Europe.

Response is developed

The epidemiology of the three diseases – HIV, TB and viral hepatitis – urged the European Commission to develop a ‘Response to the Communicable Diseases of HIV, Tuberculosis and Hepatitis C’ in 2016. Next to this, the European Commission changed the civil society forum on HIV and AIDS, an advisory body to the European Commission into a civil society forum on HIV, TB and viral hepatitis in 2017, in which AFEW International takes part. This combined focus from the European Commission and civil society organisations could give an impulse to meet the needs for prevention, treatment and care for the three diseases.

Actions within the plan

The European civil society organisations developed a list of actions that should be included in the new communication and action plan.

Prevention needs to be scaled up: HIV can be prevented by a combination of proven public health measures. Yet two third of the European countries do not have a prevention package at scale. Pre-exposure prophylaxis (PrEP) is only provided in a couple of countries.

Treatment access needs to be scaled up: treatment and early treatment improves the health outcomes of the patient and prevents onward transmission. Therefore, countries should scale up testing and offer treatment upon diagnosis and remove barriers to testing and linkage to care. Governments should remove political, legal and regulatory barriers preventing communities most affected by HIV (people living with HIV, gay men and other men having sex with men, migrants, people using drugs, sex workers, transgender person, people in detention) to access health services.

Medicines should be affordable: the price of medicines is still a major barrier to the implementation of treatment guidelines and combination preventions strategies including pre-exposure prophylaxis (PrEP).

Community-based services as one of the components of the health system: include and recognise community base services who can deliver services closer to affected populations as important part of the health system. Invest in them.

AFEW advocates for the plan

In July 2017 the European Parliament adopted the resolution on the EU’s response to HIV, tuberculosis and viral hepatitis. This is an important step towards a communication and action plan. The EU commissioner for Health and Food Safety Mr. Andriukaitis expressed that he is in favour, and a couple of governments also feel a need for such plan. The European Commission and the Commission on Public Health Directorate are still silent though.

AFEW International, together with many governmental and non-governmental organisations, think that the International AIDS Conference in Amsterdam in July 2018 would be a wonderful opportunity and the right moment for the European Commission to present its intentions and good will to fight HIV, TB and viral hepatitis by a communication and action plan. Civil society will not stop to advocate for this. Otherwise we feel that European citizens will be left behind.

Central Asian NGOs Built a Network for Cross-Border Control of Tuberculosis

Author: Marina Maximova, Kazakhstan

During the regional seminar-meeting held on 6-7 June in Almaty, Central Asian nongovernmental organizations established a network of partner organizations to address issues of labour migration and tuberculosis. The participants accepted draft Memorandum of cooperation between non-profit organizations to reduce the prevalence and incidence of tuberculosis among migrant workers in the countries of the region.

“This document was created in response to the need of NGOs consolidation to educate migrant workers about TB symptoms and the opportunities of free treatment and diagnostics in the framework of the project, to promote treatment compliance, to exchange information and to disseminate best practices in the countries of Central Asian region,” says a project manager of the Global Fund, a representative of Project HOPE in the Republic of Kazakhstan Bakhtiyar Babamuratov.

The event was organized by the Project HOPE in the framework of the grant from Global Fund to fight AIDS, tuberculosis and malaria. Representatives of non-governmental organizations from Kazakhstan, Kyrgyzstan, Tajikistan and Uzbekistan attended the seminar .

Migrants do not want to be treated

From all the countries in the Central Asian region, Kazakhstan is accommodating the main stream of migrant workers from neighbouring countries. Migration flow continues to grow. Those who come to find a job often agree to any work, they often live in poor housing conditions and do not eat well. This results in tuberculosis development. In 2016, 753 external migrants addressed the organizations of primary health care and TB facilities of Kazakhstan and were tested for tuberculosis. In 2015, there were only 157 visits. Most migrant workers prefer not to attend medical institutions and refuse to be treated in the TB clinics or to be examined by a doctor. They consider it to be a wasting of working time, i.e. money. They have to support families left at home, therefore money is the main reason to come to a foreign country. For the same reason people do not want to spend money on health, even though a Comprehensive plan to combat tuberculosis in Kazakhstan for 2014-2020 involves activities to improve TB services for migrant workers.

Particularly alarming are the cases when a migrant worker is diagnosed with HIV/TB co-infection, and when such patient needs a serious treatment and social support. This important topic will be discussed in 2018 in the framework of the 22nd international AIDS conference – AIDS 2018 – in Amsterdam. This conference will be very special as for AFEW International and the whole region where the organization works — Eastern Europe and Central Asia.

Work at construction sites and markets

In the situation mentioned above, the participation of the NGOs in addressing of this issue has become very important. Outreach workers and volunteers – people, whom the target group trusts, – are searching for migrant workers on construction sites, at the farms, markets, in the restaurants or cafes. They tell migrants about the disease and the free treatment, convince to pass the examination and to provide social support. The results of such work are impressive.

“Within the project, implemented by Project HOPE in 2016, staff and volunteers of our public Fund helped 898 migrant workers to be tested for tuberculosis. For 25 of them the diagnosis was confirmed, and with our assistance people were able to receive free treatment. Besides, we provided migrant workers with motivational food packages. 8,312 labour migrants received information about the symptoms of tuberculosis, and now they know where to go if they are sick,” says the Director of the Public Fund Taldykorgan regional Foundation of employment promotion Svetlana Saduakasova.

These are the results of the activity of only one non-governmental organization in Kazakhstan. Nowadays, social activists are effectively working in eight regions of the country. Such results are possible to achieve only thanks to active collaboration with the non-governmental organizations from those countries where work migrants come from. The community members actively communicate with each other and exchange useful information to be aware of whether the diagnosed person came back to his home city, got registered in the TB clinic, continued to receive treatment, and so on. Only under these conditions we can achieve a complete recovery from TB for each individual and finally stop the growth of morbidity in the region.

EECA Organisations Supported Michel Kazatchkine

Michel Kazatchkine, United Nations Secretary-General’s Special Envoy for AIDS in Eastern Europe and Central Asia

AFEW International has reached out to organizations and networks in Eastern Europe and Central Asia with the request to sign the support letter for re-appointment of Michel Kazatchkine as United Nations Special Envoy for HIV/AIDS in Eastern Europe and Central Asia.

His contract/mandate as UN special envoy on HIV/AIDS for Eastern Europe and Central Asia ends on 30 June. His role in addressing three epidemics in the region (HIV/AIDS, tuberculosis, hepatitis) and to raise awareness at political and scientific level of the concerns regarding HIV, TB and viral hepatitis in the EECA region is crucial and very important, especially now as we have the opportunity to highlight the challenges and successes of the region at AIDS2018 Conference. Therefore, there is a dire need for a continuation of his support.

The letter, signed by more than 70 signatories has been sent to United Nations Secretary General António Guterres. You can read the letter here.

AFEW Kazakhstan Helps People Getting out of the Shadows

29,568 HIV cases were registered in Kazakhstan as of February 2017. According to the official data, in 2016 there were14,345 tuberculosis patients registered in the country. Usually, these people hide themselves, and are often afraid even to tell their relatives about their diagnosis. But there are also those who openly talk about their status, and who show that it is possible to get out of the shadow.

At the end of March, the photo exhibition ‘Life in the Shadow’ dedicated to the World Tuberculosis Day took place in Almaty. AIDS Foundation East-West in Kazakhstan organized this event. The exhibition featured photos of people affected by HIV and tuberculosis. Today we will tell the stories of some of them.

LEARN TO LOVE YOURSELF

After the death of her mother in 2008, Venera started to lose weight. The woman thought it was because of the grief she was experiencing, but still went to the hospital for the X-rays and medical tests. There it was discovered that Venera had an open form of tuberculosis.

Venera realized that it does not matter what your position in the society is, the tuberculosis makes everyone equal

“By that time, I was very weak and all the time felt sick in my stomach. I weighed 48 kilograms,” says Venera. “During three months I was out there with an open form of tuberculosis until they accepted me in the hospital. All I wanted at that time was to lie down and die! I was in darkness, alone, rejected by everyone. I did not believe that I would get out of that hospital alive. All the time I was sick because of the pills. My son and my sister, who, after my mother’s death, was taken to an orphanage, as I did not have time to register custody, were the only people who kept me alive. They called me, told me they needed me, asked not to die. It was the strongest motivation to live! After some time, I started to feel better and began recovering.”

A year later, Venera was diagnosed with tuberculosis and lung disintegration. At that time, the woman was pregnant. Since no one told her that during the pregnancy tuberculosis can be treated, Venera was advised to have an abortion.

“In the hospital they gave me the bed that was standing in the hallway, and soon the whole department knew I had tuberculosis,” Venera recalls. “People were scared of me. The gynaecologist was commenting something like, why people like me are even allowed to give births at all. That was such a humiliation!”

After she got out of the hospital, Venera realized that it does not matter what your position in the society is, the tuberculosis makes everyone equal. The woman became stronger and kinder, started to pay more attention to her relatives, helped those who needed help. Three years later, Venera gave birth to the healthy twins.

“I defeated tuberculosis. If you have such diagnosis, do not be not afraid and believe that you will recover!” says Venera. “Do not be scared of anyone, this is not a disgrace. Most importantly – do not refuse the treatment, otherwise you can infect your relatives and friends. Learn to love yourself!”

A DECISION TO LIVE

To those who only got to know about their diagnosis, Salavat advises to be strong and take care about their health

Salavat has been living with HIV since 2011. The man has heard something about this disease, but did not have a clear understanding of it. He thought it was somewhere far away, not here, and he could not even imagine that he could get infected.

“The doctor was calming me down, saying that people live with it, that it is not fatal, that in the future there probably will be a medicine… At first, of course, I felt bad, but I quickly overcame my fears,” Salavat says. “I made a decision to live. Now I know a lot about HIV. I am confident that I can work, and I am able to live. I know that we are the same people as everybody else, we are not infectious.”

To those who only got to know about their diagnosis, Salavat advises to be strong and take care about their health. It is very important to enjoy life, to share joy, and not to lapse into a cocoon of self-isolation.

ACCEPTING THE DIAGNOSIS

Oksana learned that she was HIV positive in the rehabilitation centre for drug addiction.

The acceptance of her diagnosis benefited Oksana’s professional and personal development

“It was scary, somehow I made myself believe that I had only five years left to live and I have to fill my last years with fun and unforgettable experience!” Oksana is saying. “Before my diagnosis, I thought that HIV is something that is far away and it is impossible to get it in Kazakhstan.”

At that time, the woman needed support, and she got it from her family. The first one who learned about her diagnosis was Oksana’s sister.

“Later I asked her what she felt when she found out that I was HIV positive,” Oksana remembers. “Surprisingly enough, most of all she was worried about me, because the first thing I could convince her in was that I had only five years to live. About three years later, I accepted my diagnosis. I realized that I am not dying, and started to learn how to live with HIV.”

The acceptance of the diagnosis did not only benefit Oksana’s professional development, but also her personal development.

“I am happy to be busy with my favourite things, I am with a person I love and my family is very friendly. I learned how to live with HIV. You just need take more care about your health and love life!” Oksana resumes.

TO BELIEVE IN RECOVERY

After being diagnosed, Sultanamurat started to appreciate life more

The only thing Sultanmurat knew about tuberculosis was that it is a dangerous disease. When he heard his diagnosis, he became horrified.

“I experienced haemoptysis. It was scary, but I did not even suspect that it could be tuberculosis. I thought that I had some problems with my internal organs,” recalls Sultanmurat. “I really wanted to be cured, but the treatment was going very difficult. In the beginning, I did not tolerate the medicine and developed allergies. I was fighting with myself, tried not to miss a single day of taking medications and injections. Now I feel much better.”

After being diagnosed, Sultanamurat started to appreciate life more, treated people who are ill with better understanding, began to appreciate and love his relatives even more.

“I would like to tell those who are diagnosed with tuberculosis that this disease is curable, like many other diseases. The main thing is to follow the regime in everything, do not miss taking pills and eat well, move and do sports, be friendly,” Sultanmurat says. “The most important thing is to believe in the best, that is, in your recovery.”

AFEW Works Towards Ending Tuberculosis in the EECA region

World Tuberculosis Day is being recognized on the 24th of March in the whole world. This annual event commemorates the date in 1882 when Dr. Robert Koch announced his discovery of Mycobacterium tuberculosis, the bacillus that causes TB.

The theme of World TB Day 2017 is “Unite to End TB.” AFEW International‘s activities are also aimed on ending tuberculosis in Eastern Europe and Central Asia. In Kazakhstan, KNCV and AFEW-Kazakhstan are developing a model for structural collaboration between public health (TB, HIV, primary health care) and non-public sector through the DGIS-funded project in Almaty. AFEW International is coordinating this project. In March of 2016, a stakeholders meeting was organised to establish a Stop TB Partnership for Kazakhstan. This partnership reflects a close collaboration between different stakeholders, patients form an important group, working in the field of TB and HIV. 31 participants from NGOs, public TB and HIV services, and representatives of the Stop TB partnership of the Republic of Tajikistan took part in the meeting. The representatives from Tajikistan presented the value, successes and challenges of such partnership.

Kazakhstan is one of the three countries selected to develop a model to strengthen engagement with non-public sector for improved quality of TB/HIV services. Almaty was chosen for the implementation of the model because it is the largest urban area in the country. The project supports the establishment of a network of NGOs that have the capacity to provide TB and HIV care to the most vulnerable populations, and build a partnership between public and non-public sectors to improve access to TB and HIV care by the development of a referral mechanism.