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.

European Community Health Worker Online Survey

The first ever Europe-wide online survey has been launched with the aim of improving health care services for men who have sex with men (MSM). The ECHOES survey is the first of its kind to target community health workers who provide sexual health support including counselling, testing, and psychosocial care for MSM. The findings of the ground-breaking ECHOES survey will be used to help understand who CHWs in Europe are, what they do, where they do it, how, and why they do it. Findings will also be used to identify the barriers and challenges to CHWs as well as identify training needs.

‘Community Health Worker’ (CHW) is a relatively new term for Europe. Many CHWs go by different titles such as outreach workers, peer educators, NGO workers, promoters, peer counsellors, peer navigators, lay health workers, health providers, community advocates, volunteers, and so on. Regardless of title, CHWs represent a large and diverse group of people who provide crucial sexual health support around HIV/AIDS, viral hepatitis and other Sexually Transmitted Infections (STIs), to gay, bisexual and other MSM in community settings.

The survey was developed by the University of Brighton’s ECHOES development team (Dr Nigel Sherriff, Professor Jörg Huber, and Dr Nick McGlynn) and focuses on different aspects of daily activities of CHWs, their beliefs, level of knowledge, and experiences. Dr Sherriff said:

“The overall aim is to assess the knowledge, attitudes and practices of community based health workers providing health services for MSM. It will provide the baseline for the evaluation and further improvement of training programmes and materials for training of community health workers working with MSM and for quality improvement of the services provided for MSM.

“We hope as many workers as possible throughout Europe who provide sexual health services for MSM in the community will take part. This will be crucial to help ensure the findings are able to inform future policy priorities for the European Commission and its member states.”

European Community Health Workers Online Survey (ECHOES) is available online NOW in 16 languages and will remain open until 31st December 2017.  Take part here.

Further information:

ECHOES is part of ESTICOM project funded by the European Health Programme 2014 – 2020. ESTICOM also includes EMIS 2017 the survey addressing gay men and other MSM and a training programme for CHWs in order to improve access and quality of prevention, diagnosis of HIV/AIDS, STI and viral hepatitis and health care services for gay men and other MSM. The project is coordinated by the Robert Koch Institute in Berlin.

The Project is an important opportunity to strengthen community response and raise awareness about the persisting legal, structural, political and social barriers hindering a more effective response to the syndemic of HIV, viral hepatitis B and C, and other STIs among MSM. Early findings are expected in the Spring of 2018.

To take part in the ECHOES survey go to: www.echoessurvey.eu

To find out more about the project go to: www.esticom.eu 

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.

Website about Health for Migrants is Available in 13 Languages

 

health-site_engThe information about body, family planning and pregnancy, infections, sexuality, relationships and feelings, rights and law can be found on the website Zanzu – my body in words and images. This projects for migrants was developed by the Flemish Expertise Centre for Sexual Health Sensoa and the German Federal Centre for Health Education (Bundeszentrale für gesundheitliche Aufklärung) BZqA. The information is available in 13 languages, including Russian and English.

Information on the website is presented in easy interactive form. Pushing the image brings the reader to other pictures, behind which they can find important information. Section “Dictionary and translations” will provide users with the translations of most widely-used words on the topics mentioned above. On the website there are also contacts of the doctors who help migrants with their health issues.

Besides, on the site there is information for professionals in English, Dutch and French languages. This section contains advice to the foreign professionals on how to talk to migrants and why it is important to discuss their health issues. The content on the website was approved by an international advisory board of European experts in the field of sexual and reproductive health including representatives of WHO.