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.

Tuberculosis and HIV are the “Imported” Diseases of Migrants

Author: Nargis Hamrabayeva, Tajikistan

A big amount of working age population in Tajikistan (where the entire population is eight million people) take part in labour migration to Russia. After their return to homeland, migrants get diagnosed with tuberculosis and HIV.

A 32-year-old labour migrant from Tajikistan named Shody has just returned from Russia. The doctors have diagnosed him with tuberculosis. The man states that he spent six years working in Russia. He went back home only a couple of times during that period.

The fear of deportation – reason for tuberculosis

“I worked at the construction site. Along with several other fellow countrymen we lived in damp and cold premises. A year ago, I started feeling weak, suffered from continuous coughing, but did not seek any medical advice. First of all, I did not have spare money, and secondly, I was afraid to lose my job. If I was diagnosed with tuberculosis, I would have been deported. Who would take care of my family then? Every day I felt weaker and weaker and I had to buy the ticket home,” told the migrant. Now Shody gets the necessary treatment according to the anti-tuberculosis programme, and his health is getting better.

A few years ago, the results of the research on tuberculosis spread prevention were revealed in Dushanbe. These results have shown that hundreds of Tajik migrants return from Russia with tuberculosis.

Experts say that around 20%, or every fifth patient, from the newly diagnosed patients turn out to be labour migrants.

“For instance, in 2015, 1007 people (which is 19.7% cases from the entire number of patients diagnosed with tuberculosis) were labour migrants. In 2016 there were 927 or more than 17%,” Zoirdzhon Abduloyev, the deputy director of the Republican Centre of Population Protection from Tuberculosis in Tajikistan says.

According to him, the research has shown that most of the migrants became infected during their labour migration period.

“The main factors that lead to the spread of this disease among migrants are the poor living conditions. Big amounts of people in small areas, unsanitary conditions and poor nutrition, late visits to the doctors, and most importantly the fear of deportation from Russia,” says Abduloyev.

HIV is “brought” due to the migration

Many experts say the same thing about the spread of HIV in Tajikistan. That “it is being brought from there, due to the migration.”

Dilshod Sayburkhanov, deputy director of the Republican HIV/AIDS centre in Tajikistan, says that big number of Tajik migrants go to work in countries with significantly higher HIV prevalence rate compared to Tajikistan. Usually these are seasonal migrations, and after the end of the season migrants come home.

“Official statistical data shows the dynamical growth of the number of people who have been in labour migration among the new cases of HIV in Tajikistan. In 2015, there were 165 people diagnosed with HIV, whose tests were marked under the labour migrant category. Among them there were 151 men and 14 women, which is 14.3% from the whole number of new HIV cases. In 2016 – 155 (14.8%), in the first half of 2017 – 82 people (13.1%). In 2012, 65 migrants (7.7%) were diagnosed as HIV-positive,” says Sayburkhanov.

Statistics demonstrates the connection between international Tajik labour migration and the growth of new identified HIV cases, according to him.

Ulugbek Aminov, state UNAIDS manager in Tajikistan, also agrees with this. He thinks that migration and HIV are closely connected and result in a social phenomenon.

“There is an assumption that migrants, being in tough emotional and physical conditions, can behave insecurely in terms of HIV and thus have risks of the virus transmission in destination countries. Tajikistan HIV import issue is still in need of an in-depth study,” believes Ulugbek.

It is important to consider that migrants often represent vulnerable to HIV groups of population (for example people who inject drugs), and not knowing their pre-migration HIV status complicates the future process of HIV monitoring. Apart from that, the chances for migrant to receive the necessary specialized treatment go down. The treatment would prevent the spread of HIV to migrant wives and partners in their home country.

“Therefore, experts’ first priority task is the timely identification and quality monitoring of the disease in the countries where migrant live and transfer to, until the return of the migrant back home,” notes Ulugbek Aminov.

Experts believe that there should be a complex of prevention activities for HIV, sexually transmitted diseases and tuberculosis among such vulnerable groups as migrants and their sexual partners.

Drug-Resistant Tuberculosis on the Rise in Eastern Europe

Author: Ingrid Hein

An epidemic of drug-resistant tuberculosis (TB) is mounting in Eastern Europe, and without intervention on multiple fronts there is little hope the spread will slow. For several years, we have been hearing that there is “a need for urgent action,” said Daria Podlekareva, MD, PhD, from Rigshospitalet at the University of Copenhagen. It needs to be addressed now, she told Medscape Medical News.

However, cultural and political issues mean that it is “not always easy to adopt international guidelines or initiate research projects,” she said at the International AIDS Society 2017 Conference in Paris.

“It’s difficult to go into Eastern Europe and initiate projects and do studies,” she explained. “Some Eastern Europe countries are still behind an iron wall.”

It can be easier to conduct research into infectious disease in other places — even African countries — than in most formerly Soviet Union countries. To help curb the epidemic in Eastern Europe, the World Health Organization (WHO), the Stop TB Partnership, and the European Union should collaborate to encourage governments to recognize TB as a public health emergency and to implement international programs and standards of care, said Dr Podlekareva.

Eastern Europe Is a “Perfect Storm” for TB

TB continues to be a major public health issue, according to the 2017 WHO report — Tuberculosis Surveillance and Monitoring Report in Europe 2017 — released in March. Most of the 323,000 new TB cases and the 32,000 deaths due to TB in the WHO European Region in 2015 occurred in Eastern Europe and Central Asia.

Eastern Europe is a “perfect storm” for the spread of TB because it has high rates of incarceration, HIV infection, and injection drug use, and it has disintegrated healthcare systems, suboptimal TB diagnosis and treatment, and poor adherence rates, Dr Podlekareva said.

In addition, nearly half of all TB cases are multidrug-resistant, which requires longer, more expensive treatment than drug-susceptible TB, and leads to more adverse effects. Treatment is also less accessible in the region.

And because rates of HIV infection are on the rise in Eastern Europe, where antiretroviral therapy coverage is low, the fast progression of immunosuppression leads to increases in the rate of TB and HIV coinfection.

More Likely to Die From TB in Eastern Europe

In an international cohort study on the management of concurrent HIV and TB, Dr Podlekareva and her colleagues found that TB-related deaths were significantly more common in Eastern Europe than in Western Europe or Latin America (Lancet HIV2016;3:e120-e131).

In that study, 1406 consecutive HIV-positive patients aged 16 years or older with a tuberculosis diagnosis were followed up for 12 months at one of 62 HIV and tuberculosis clinics in 19 countries.

The prognosis was far worse for the 834 patients treated in Eastern Europe than for the 317 treated in Western Europe or the 255 treated in Latin America.

Of the 264 (19%) deaths in the study cohort, 188 (71%) were related to tuberculosis.

Cause of Death Eastern Europe, % Western Europe, % Latin America, % P-Value
All 29 4 11 <.0001
TB 23 1 4 <.0001
 “Latin America and Eastern Europe have comparable economies, as middle-or poor-resource settings,” Dr Podlekareva said. But “Latin American patients did better — much better — than the Eastern European patients.”

In Eastern Europe, diagnosis is often made on the basis of clinical judgment, not laboratory confirmation, she pointed out. And treatment is often suboptimal, including very few active drugs. Moreover, disintegrated healthcare systems in Eastern Europe are detrimental to treatment, and care centers for TB and HIV are not combined. Plus, opiate-substitution therapy — an effective treatment for drug dependence — is limited or prohibited in most regions.

“Nearly 40% of our cohort had multidrug-resistant TB,” Dr Podlekareva reported.

Eastern Europe does not have to invent its own solutions; it can adopt “what we already know,” she told Medscape Medical News. Experience from the 1980s HIV epidemic in Western countries can be a guide. There are thousands of publications on the strategies and standards of care that work.

Prisons and Drugs Contribute

In Russia, illicit drug use is a criminal offense, and “methadone treatment is prohibited,” Dr Podlekareva said. “In Eastern European countries, like the Ukraine and Belarus, there are some drug-treatment programs, but they are not widely used as a standard of care.”

With no methadone support and very few social supports for injection drug users, access to treatment, adherence, and retention in care are a challenge.

Clinicians need to ramp up their efforts to convince patients to get treated. “There is a need for clinicians to be more willing to work together, to support these patients,” she said. “When we ask why a patient is not on antiretroviral therapy, they say the patient refused it, but I think it’s the clinician’s task to convince the patient.”

When injection drug users are thrown in jail, as they are in Russia, TB transmission proliferates, Dr Podlekareva explained. A previous study showed that intrapopulation transmission in prisons, population-to-prison transmission, intraprison transmission, and prison-to-population transmission have driven overall population-level differences in TB incidence, prevalence, and mortality rates in countries of the former Soviet Union (Proc Natl Acad Sci USA.2008;105:13280-13285. 

She is not alone in her assessment. “The problem in Eastern Europe will not go away, especially multidrug-resistant TB, if the infrastructure is not improved,” said Christoph Lange, MD, from the tuberculosis unit of the German Center for Infection Research and Research Center Borstel in Germany.

“Patients have been getting treatment on and off,” so new strains of multidrug-resistant TB are emerging, he told Medscape Medical News. “People are now getting infected with drug-resistant strains,” and most Eastern European countries are not equipped to treat multidrug-resistant TB.

Dr Lange said that in the past year he has seen five Armenian patients with multidrug-resistant TB looking for treatment at his clinic. He referred to them as “health-seeking migrants,” and said, “we expect to see more.”

“The number of people with drug-resistant TB is increasing more than 20% every year,” he reported. The current targets of elimination are not credible and they don’t work under the current circumstances; health organizations and governments have to acknowledge that.

“Instead of having the goal of elimination, we need to work toward low incidence,” Dr Lange said. “We have to redefine our goals and address what is most endangering public health.”

Drs Podlekareva and Lange have disclosed no relevant financial relationships.

Source: International AIDS Society (IAS) 2017 Conference. Presented July 2017.

The Path to the Self-Financing of the HIV Programmes in Kyrgyzstan

Author: Olga Ochneva, Kyrgyzstan

A significant reduction of funding for the programs against HIV infection was registered during the recent years in Kyrgyzstan. Last year the news that the Global Fund – the main donor of the HIV and tuberculosis programmes in the country – cuts their funding, got into the headlines.

Needs and opportunities

Funding for HIV programmes from the Global Fund over the past two years in the country has actually decreased by 30%, from $7.5 million in 2014 to $5 million in 2016 and 2017. The trend continues to grow: in the application for 2018-2020 only $3.7 million per year were pre-approved, and that is one more million less than before.

“$7.8 million per year are divided in the new Global Fund application between HIV and tuberculosis, but previously such amount of money was allocated only for HIV. Notice that reduction of funding comes amid the growth of demands. The situation with HIV in the country is now getting close to the concentrated phase, and the number of people on treatment over the past two years has grown almost twice,” said the head of Harm reduction programmes association “Partner Network” Aybar Sultangaziyev. “We have enough funds for this year, but in the next three years we expect the budget gap to grow. Only for persons who need treatment – about 6,000 people – we need $3.5 million by 2020, but for HIV we only have $3.7 million allocated in the budget.”

From donor to national funding

The general global trend of reducing grant support and the rise of Kyrgyzstan in the qualification of the World Bank from the level of countries with low income to the level of countries with lower middle income encourages the transition of the country to national funding. It is a difficult process for the state, because from the very beginning the prevention programmes in the country (about 15 years) were funded by international donors.

Ulan Kadyrbekov

“Previously money from the state budget was allocated only to support infrastructure and salaries of the AIDS-service employees,” Director of the Republican AIDS-center Ulan Kadyrbekov says. “Starting from the year before last, the state started to allocate 20 million soms ($289 thousand) annually for HIV programmes. The condition of awarding $11 million grant for HIV from the Global Fund for the next three years was the state contribution of 15% of the whole grant amount. Nowadays we set the national program on overcoming HIV in the Kyrgyz Republic until 2021 and in the budget we have allocated these 15% of the national contribution.”

Until the last November it was not clear if Kyrgyzstan receives the Global Fund money or not. This fact became the main argument for the civil sector in their work on promotion of national funding.

“In fact, the result of our work was the development of the roadmap, i.e. the transition plan to national funding, which comes as an addition to the National program on overcoming HIV,” says Aybar Sultangaziev. “In addition to already allocated budget we have received further 23 mln. soms ($333 thousand) in 2018 and 50 million soms ($725 thousand) per year starting from 2019. It is still not enough. In fact, we requested up to 4.5 times more in 2018 and 2.5 times more starting from 2019 from the state budget.”

Now the National program for overcoming HIV in the Kyrgyz Republic until 2021 and Roadmap for the transition to national funding are submitted to the Government of Kyrgyzstan. The program must be approved this August. It will become known if this money is included in the Republican budget by the end of 2017.

Costs saving and optimization

Upon the condition that the government will fulfill the financial obligations under the National program until 2021 and the country will receive donor funds, there still will be a deficit in the amount of $1.5 million per year. Global Fund’s money has not been finally divided between programme activities. It will be decided which expenditure headings will be underfunded in the nearest future.

Aybar Sultangaziev

“We expect that deficits will be covered by funding from the other donors and by reduction of preventive measures,” Aybar Sultangaziev is saying. “For example, it is likely that we will close social centers. Nowadays six social centers are already closed, we excluded the treatment of STIs (sexually transmitted infections – ed.), we also partly excluded diagnosis and treatment of opportunistic infections, we decreased the number of condoms and syringes for distribution. There are other donors for HIV in our country, the largest of which is the USAID project Flagship. It allocates about $700 thousand a year on drug users. With this money we are able to cut funds from the budget of the Global Fund for this group. Now we have a narrower task of responding to the epidemic. Therefore, the only must have budget items are methadone and antiretroviral (ARV) drugs. We are trying to increase or at least keep these budget lines at the same level.”

Another step in cost optimization and in the transition to national funding is the transfer of control of Global Fund grants from the current recipient – UNDP – to the Ministry of health. Experts predict that it will happen no earlier than during the second half of 2018, as the Ministry of health needs to get prepared.

“Nowadays the treatment is provided by the Global Fund. Even after funds were allocated in the national budget, we still cannot use them for the purchase of ARVs for key vulnerable groups, because there is no mechanism for procurement of drugs and for social procurement. Our priority is to provide all the necessary documents for these procedures,” Ulan Kadyrbekov said. “Thanks to funds reallocation and optimum employment of resources, the National programme for the next three years will be able to slow down the spread of HIV. Even now we have good chances to reach the 2020 UNAIDS goals of 90-90-90. The process of transition to national funding and running programs in the face of cutbacks of donor funding is a great challenge. The Ministry of Health has already submitted the preliminary topics of presentations at the conference AIDS 2018 in Amsterdam, I think, by July of the next year we will have a great practical experience to share.”

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.

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

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

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.

Roman Dudnik: “People with HIV and Tuberculosis are the Same as We Are”

A photo exhibition dedicated to the World Tuberculosis Day will be opened in Almaty, Kazakhstan on March 18. The purpose of this exhibition is to show that people living with HIV or tuberculosis are the same as everyone else. This exhibition is one of the first important public events held by AFEW-Kazakhstan in 2017. We are talking about this and discussing other plans for this year with the executive director of AIDS Foundation East-West in Kazakhstan, Roman Dudnik.

– How was the year of 2016 for you? What were the new and exciting things that happened?

– Even though the year of 2016 was difficult, it was successful for us. We moved to a different office. Before, we were in the small office building. Now we are in the new building with much more space. The repairs were made based on our requirements, using our colours. There is a very good energy here, and it helps to work good.
In 2016 we finished the first part of the project HIV React that is financed by USAID/Central Asia, and we got the extension for the next three years. This is our main project. It is regional: we work in Kazakhstan, Kyrgyzstan and Tajikistan. Being the part of this project, we are working in preventing HIV among injecting drug users in prisons. We also work with people living with HIV who are getting ready to be released, and those who are already released. With specially developed START plus program, we prepare a person for his release two months before it happens, and then continue to work with a person for another four months after the release. Additionally, we train medical and non-medical staff of correctional facilities and employees of non-governmental organizations. This program is unique and does not work in many countries of the world. All efforts are aimed at preventing HIV infection and supporting those who live with HIV. The main goal, of course, is to encourage a person to get tested for HIV. If the test is positive, then we send a person to the AIDS centre, and we motivate him to start treatment with antiretroviral medicine, if necessary. We also help to restore needed documents, find jobs, renew social connections. This program is unique because it has a human face. We are aimed at a specific person, at solving of his or her problems. We also try to form skills so that people can solve their problems in the future themselves.

– Working in three countries in Central Asia with the same groups of population in HIV React project, can you observe the common tendencies?

– The general trends in all three countries are that HIV in places of detention exists, and the number of new cases of HIV transmission is increasing. Convicts is the group that requires intense attention and constant work. There is a very high level of stigma from prison staff. Of course, the reason for this is a lack of information, and this is what we are trying to correct through the trainings. The most successful project is implemented in Kyrgyzstan, where the criminal executive system is more open and sympathetic to such activities. In Kazakhstan and Tajikistan it is a little more difficult, but despite this, we manage to work and implement all planned activities within the framework of the project.

– Besides this, what were other projects that you worked on in 2016? 

– Since January we started with the new City Health project with the financial support of the Global Fund, where the main grant recipient is the International Charitable Foundation “Alliance for Public Health”. The project works in five cities of the EECA region. We are responsible for work in Almaty. Implementing this project, we will involve the city administration in the prevention of HIV infection among vulnerable groups: injecting drug users, men who have sex with men, and sex workers. We plan to create a city council on HIV/AIDS. We know that the project is not simple, but it is interesting for us. For Almaty, the project is very important, since it is the most populated city in the country, and the problem of HIV infection is especially relevant here. It will be important for us to make this a successful model and to duplicate this experience to other cities and countries.

– A year ago you had a school of tolerance, the goal of which was to reduce stigma on the part of health care providers. Please, tell us if you can see the results of this school?

– It is difficult and too early to talk about the results. Stigma and discrimination are big problems for Kazakhstan and whole Central Asia, and this is one of our main areas of work. One school of tolerance cannot solve this issue. Without any doubt, there is a big difference in how people come to the training, and what they think after three or five days of the training. In our training, we focus on the personal qualities of a person, perform the situations when the participant himself acts as a client or the representative of a vulnerable group, and is experiencing everything what the client is experiencing by himself. Human intolerance was formed long ago, and one year of work cannot change it. Nevertheless, there is already some progress in this field.

– On the 18th of March you will have the photo exhibition dedicated to the World Tuberculosis Day. Please, tell us more about it.

– The exhibition is intersecting with the topic of stigma and discrimination. We invite everybody to come and see it. It will be held from 18 to 31 of March in the gallery June 24. During the exhibition, there will be master classes, lectures, and talks with people who are depicted on the photos. On the photos, there are 15 Kazakhstani people who live with HIV, or who were cured of tuberculosis. The name of the exhibition Life in the Shadow speaks for itself, because due to the human ignorance, the heroes of our photos should hide their diagnosis from others and live with their problem alone in fear. Now they have opened their faces for the exhibition and they are not afraid to share their experiences. By each photo, there is a written piece with the story of the person: what he was going through, what he was thinking about. The purpose of the exhibition is to shed light on everyday life of people affected by HIV and tuberculosis. They are just like us. The only difference is that they know their diagnosis and they have to fight for their health. Myths and prejudices about HIV and tuberculosis make them hide this part of their lives. Although, the understanding and support of others is what helps them to defeat the disease. The exhibition is positive; people are smiling on the photos. We made only colour photos that show people in everyday life: in the flower shop, in the metro, during painting. During the exhibition, we will tell the visitors about HIV and tuberculosis, tolerance. We will also distribute flyers with the information about where you can bring, for example, bags with clothes that are no longer needed and help people who live with HIV in such a way.

– Even though it is almost the end of the first quarter of 2017, I still would like to ask you about the plans of AFEW-Kazakhstan for this year.

– We plan to work with our projects further. In April, we will be having big regional training about gender violence. We already invited a very good professional in this field to be our trainer. This is a new topic for us, and everything new is interesting for us.