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.

The Photo Exhibition ‘Life in the Shadow’ was Shown in the Netherlands

Author: Olesya Kravchuk, AFEW International

Last week the photo exhibition ‘Life in the Shadow’ was brought to the Netherlands by public Foundation ‘AIDS Foundation East-West in Kazakhstan.’ It was possible to see the images of people affected by HIV and tuberculosis during Wolfheze workshops in the Hague on 31 May – 2 June.

The main goal of the exhibition is to reduce stigma and discrimination against people with HIV and tuberculosis.

“We were very lucky with the opportunity to bring the exhibition to the Netherlands and show it to the bigger number of people,” the project manager of AFEW Kazakhstan Kristina Zhorayeva is saying. “Our models were very brave to show their faces and share their personal stories. They wanted to tell people that they are not different and they also have dreams and hopes.”

At the end of March the photo exhibition ‘Life in the Shadow’ was shown in Almaty, Kazakhstan. Some people from Kazakhstan saw the images for the first time in the Netherlands though.

“I have heard about this exhibition from AFEW, and today I saw it in the Netherlands even though it was displayed in my native Almaty,” the head doctor of one of the private clinics of Almaty Galiya Tulebayeva is smiling. “I look at these pictures of the patients with pleasure. It is great to see that there are smiles on their faces and they are in positive mood.”

As of February 2017, in Kazakhstan there were registered 29,568 HIV cases. According to the official data, in 2016 there were 14,345 tuberculosis patients registered in the country.

Visitors reviews of the photo exhibition ‘Life in the Shadow’

Jamshid Gadoev, WHO Country Office for Combating Tuberculosis, Hepatitis and HIV-AIDS in Uzbekistan:

– Only brave people can show themselves in such a way. They got sick and went through the processes that other people are going through now and do not hesitate to show all of this. On each photo I see a smile. Probably, they are happy with their treatment and are glad that they were rescued. They seem to be happy with their lives.

We also published a book and made a video about what tuberculosis patients feel before, during and after their treatment. We asked our patients to associate tuberculosis with some color, and children were asked to associate it with color and with the animal. Many people said that the disease for them is associated with red, yellow or black. Children usually said that their illness is a red teddy bear. Adults told that for them tuberculosis is black and is associated with the sound of a trumpet. After treatment, these associations often change and colors become brighter.

Alexei Bobrik, WHO technical specialist on HIV, tuberculosis and hepatitis, WHO Country Office, Ukraine:

– To overcome the burden of these diseases, it is necessary to talk about this problem so that the population knows about it, and the negative attitude towards the diseases decreases with time. It is necessary to communicate information, so that there is no stigma and discrimination. We must know that normal people are vulnerable to these serious diseases as well.

AFEW Kazakhstan Helps People Getting out of the Shadows

Author: Olesya Kravchuk, AFEW International

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.”