ON THE WAY TO CREATING THE ALL-UKRAINIAN ASSOCIATION OF TB SUFFERERS

Seminar for activists from the community of TB sufferers on topical issues related to advocacy of transfer to the outpatient TB treatment model

On 28 April 2016, at Kyiv City Centre for Social Services for Family, Children and Youth, a seminar took place for activists from the TB sufferer community on issues related to advocacy of transfer to the outpatient TB treatment model.

The seminar was held as part of the project "Creating a Favourable Sociopolitical Situation for Transfer to the Outpatient TB Treatment Model in Ukraine".

The project is being implemented by the Public Movement – Ukrainians Against Tuberculosis Foundation with financial support from the Global Fund to Fight AIDS, Tuberculosis and Malaria as part of the project "Strengthening Health Systems for Effective TB and Drug-Resistant TB Control in Eastern Europe and Central Asia" (the principal recipient – the Centre for Health Policy and Studies, Republic of Moldova in partnership with TB Europe Coalition).

The seminar was opened by the project's manager, national expert on advocacy, communication and social mobilisation (ACSM) in the area of TB control Vitaly Rudenko who provided the participants with information on the project "Creating a Favourable Sociopolitical Situation for Transfer to the Outpatient TB Treatment Model in Ukraine".

The participants were offered to fill in a questionnaire about awareness and attitude of the population to phthisiological care provision in Ukraine, the essence and peculiarities of the outpatient TB treatment model, accessibility of medical services to the main population groups affected by the TB problem (TB MPGs) and the barriers to ensuring it.

Leonid Turchenko, the project's medical consultant, told those present about the situation with TB in Ukraine and worldwide.

Viktor Pylypenko, a member of the National Council on TB and HIV/AIDS Control with the Cabinet of Ministers of Ukraine, presented information on the creation of the All-Ukrainian Association of TB Sufferers and familiarised the participants with the declaration of principles, areas and tasks of its activity.

In particular, it was noted that those who suffered from TB in one way or another know from their experience how Ukraine's TB care system functions, how effective, patient-oriented, convenient, accessible and affordable it is.

These people have to deal with social stigma and discrimination, since in the society, because of lack of appropriate information, there's a negative attitude to people affected by this problem. Communities with TB sufferers' experience are very important for examining the subjective and social characteristics of the disease. Their view of such issues as the barriers to receiving TB care and the obstacles to treatment completion could lead to the development of a more effective and patient-friendly TB control programmes.

More active participation of the community of people affected by the TB problem and the civil society in the planning, monitoring and implementation of the National TB Control Programme is important for the development of comprehensive approaches covering all the participants which can help choose the best treatment methods.

As the founders of the All-Ukrainian Association of TB Sufferers wrote in their Declaration of Principles and Intentions, "We'll exercise permanent public control over the activity of central and local authorities in the area of TB control and at the same time raise decision-makers' awareness about the need to reform the current phthisiological care provision practice that should become closer to a patient, and the obstacles to receiving medical care that exist today should be removed. We'll monitor and record every case of violation of the rights of Ukrainian citizens to medical and social care, improper provision of TB care, including cases of the absence of drugs necessary for this or their use in a non-professional way that leads to deterioration in patients' health. To this end, we'll provide various legal, advisory, information services for all those who need them, thus helping to overcome negative perception in the society of TB sufferers and members of their families, manifestations of stigma and discrimination against such people".

Sergiy Bortkevych, national expert on ACSM in the area of TB control, informed the participants about the essence and need for communication and advocacy in the area of TB control and the place of the main population groups affected by the TB problem (hereinafter – TB MPGs) in this. Also, he presented the Joint Plan for Advocating Transfer to Outpatient TB Treatment for 2016 developed by the Public Movement – Ukrainians Against Tuberculosis Foundation, "Stop TB Together" Coalition of Organisations and the All-Ukrainian Association of TB Sufferers.

Igor Gorbasenko, national expert on ACSM in the area of TB control, member of the National Council on TB and HIV/AIDS Control with the Cabinet of Ministers of Ukraine, delivered the report "The essence of social mobilisation aimed at overcoming stigma and discrimination against TB MPGs".

After lunch, those present took part in the focus group "Topical issues related to advocating transfer to the outpatient TB treatment model, with provision of information on this for TB MPGs, protection of the rights and interests of the association's members, overcoming stigma and discrimination against TB MPGs" which was moderated by Vitaly Rudenko and Sergiy Bortkevych.

The focus group revealed positive attitude of TB sufferers to the outpatient model of treatment of the disease, identifying at the same time a number of barriers to reception by TB MPGs of medical care and a number of unsolved and technically unsettled problems in the outpatient treatment models that are being implemented in some of Ukraine's pilot regions. Focus group participants proposed their methods for solving them.

At the end of the seminar, the participants were offered to fill in the final questionnaire and were handed certificates.

This material was published using funds from the grant provided under TB-REP project financed by the Global Fund to Fight AIDS, Tuberculosis and Malaria and implemented by the PAS Centre as the Main Recipient. The opinion of the author given in this publication may not coincide with that of the Global Fund, the Main Recipient and other partners in TB-REP project.

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