Skopje meeting report

REPORT
from a Regional Meeting of Activists
Access to HIV Treatment
in Central and South East Europe
24-26 October 2014, Skopje, Republic of Macedonia
Organized by Stronger Together, the Association for Support of People Living with HIV, in collaboration with NeLP, the Network of HIV Low Prevalence Countries in CE and SEE
Report prepared by:
Bryan Teixeira & Nenad Petkovic

Access to HIV Treatment in Central and South East Europe
Skopje, 24-26 October 2014
Organized by Stronger Together & NeLP 2
We would like to thank the Global Fund to Fight AIDS, Tuberculosis and Malaria in Macedonia for its financial support without which the meeting would not have taken place.

CONTENTS PAGE
ABSTRACT ................................................................................................................................... 4
MEETING SUBJECTS AND PRESENTATIONS ............................................................................ 6
PARTICIPANTS’ PROFILES AND GEOGRAPHICAL COVERAGE ............................................... 10
OUTCOMES ................................................................................................................................ 11
EVALUATION .............................................................................................................................. 12
RECOMMENDATIONS AND FURTHER STEPS ........................................................................... 14
ANNEXES ..................................................................................................................................... 15

ABSTRACT
The meeting was held from October 24th to 26th 2014 in Skopje, Macedonia, organized by Stronger Together, the Association for Support of People Living with HIV, in collaboration with the NeLP, Network of HIV Low Prevalence Countries in CE and SEE. It gathered 24 participants from 18 countries in Central and South East Europe (CSEE).
The overall goal of the meeting was to increase the understanding among activists about the situation of access to HIV treatment in CSEE and to identify appropriate advocacy strategies. The specific objectives to be achieved at the meeting were:
• To create better understanding among activists of the issues related to access to HIV treatment in the region of Central and South East Europe.
• To exchange experiences of community actions in the CSEE region that aimed to ensure continuous access to optimal treatment and diagnostic tests for people living with HIV.
• To identify possible joint advocacy initiatives in tackling the complex issue of access to treatment in Central and South East Europe.
Convening this type of meeting in the Republic of Macedonia and in the region was also meant to contribute towards changing the perception of HIV in Central and South East Europe, as well as towards an increased public attention to HIV in these low prevalence settings.
In the preparation for the meeting, the selected participants were asked to complete a questionnaire in order to identify what barriers to access are most common and most pressing in our region, as well as to explore if different countries face different problems. The results made us aware of the situation in respective countries and we were able to develop reports identifying the most important aspects of each topic relevant for the meeting. These data were additionally supported with two comprehensive presentations providing basic knowledge about patents and intellectual property barriers to access, generic competition, negotiations with pharmaceutical companies, regional procurements, differential pricing schemes, arguments about access issues in middle income

countries and price-setting in Europe and non-EU countries. As a result, the members of the group were well informed and could actively interact thus creating a productive atmosphere which enabled the group dynamic to increase from session to session.
As a result of the discussions, participants were able to arrive at an accurate assessment of the situation regarding access to HIV treatment in the region, identify major obstacles for quality treatment and find out the best strategies for national and regional actions. One of the products of the meeting was the Call for Action, developed during the meeting by all participants, which challenges governments, pharmaceutical companies, and the affected communities to increase their efforts towards securing sustainable and quality treatment.
Upon completion of the meeting, the organizers held a press conference in order to send a clear message to the public about the importance of accessibility of HIV treatment and to promote the meeting results. The press conference was a great success as statements and the Call for Action were published in major Macedonian media.
The follow-up activities will include distribution of the Call for Action, networking with relevant stakeholders, further exploring and learning about the concerned issues and commitment to fulfilling the important duties indentified in the Call for Action, as well as continuation of activities to increase access to HIV, co-infections and co-morbidities treatment in the region of CSEE.
The success of this action was evident. We got the chance to hear from the participants in a clear and concise manner about their satisfaction as well as about their sense of the importance of the issues to their peers.
The benefits of this experience, the first of its kind in the region, are numerous. The participants are now not only acquainted with the latest facts regarding access to HIV treatment, crucial to the improvement of situation in their own countries, but are also committed to transmitting the information to others in the area they work, and to further involvement in regional activities and networking.

MEETING SUBJECTS AND PRESENTATIONS
The methodology of the meeting involved interactive communication and participatory learning combined with several presentations on the basic facts and information required for meaningful participation and the successful outcome of the meeting. As for facilitation of the meeting, two experienced facilitators/trainers were selected: Mr. Bryan Teixeira, well experienced expert in the capacity building of civil society and a UNAIDS PCB member, and Mr. Nenad Petkovic, long-term activist and trainer in the field of HIV and Human Rights on the European level. They were responsible for moderating discussions as well as ensuring participation and transfer of know-how for successful community strategies on access to quality treatment in the region. The meeting included the following sessions:
 WELCOME SESSION WITH PERSONAL INTRODUCTIONS
This was a brief introduction among the participants and an opportunity for informal communication with guests from the UNICEF office in Macedonia, Skopje University Clinic for Infectious diseases and collaborating NGOs.
 INTRODUCTION TO THE AGENDA AND EXPECTATIONS EXERCISE
The aim of this session was to introduce the focus of the meeting to the participants and to make them familiar with the working programme. We also learned about the participants’ expectations, which could be divided into three groups. Partic- ipants expected that meeting will allow them to understand about available treatment options, what main barriers for access are and who is responsible for purchasing; to exchange experiences about community activities; the best advocacy strategies; contacts with their peers in different countries; to act in order to build a good and well organized network, develop a public statement and improve situation in their own countries in respect of access to HIV and co-infections treatment.
 EDUCATIONAL SESSION
The purpose of this session was to get participants on the same track and answer questions such as: What do we mean by access? What are the main access issues globally? What are the obstacles and how have they been solved elsewhere? Topics included patents and intellectual property as barriers to access, generic competition, negotiations with pharma, and regional

procurements; differential pricing schemes; arguments about access issues in middle income countries; and price-setting in Europe and non-EU countries. The session included two presentations delivered by Mr. Andrej Senih, Director of Stronger Together and an experienced activist in the field of HIV treatment and Mr. Nenad Petkovic, Director of Q-Club, a Serbian NGO, and a lawyer and expert in the field of access.
 OVERVIEW OF ACCESS ISSUES IN CENTRAL AND SOUTH EAST EUROPE
This part of the meeting was committed to the presentation of the results of the pre-meeting questionnaire. The questionnaire was distributed to the participants prior to the meeting in order to identify what barriers to access are most common and most pressing in our region, as well as to become aware that different countries might be facing quite different problems (es- pecially when it comes to EU as opposed to non-EU countries). All participants answered the questionnaire and the results were summarised in the presentation which provides us with accurate information on the availability of ARVs, diagnostics, prices, pricing policies and reimbursement schemes in concerned countries.
 HIV IN MACEDONIA
This was a comprehensive overview of the epidemiological situation and access to treatment in Macedonia, which included historical aspects and the current situation as well as looking towards the future. It was delivered by Dr Milena Stevanović, physician at the University Clinic for Infectious diseases in Skopje, dealing with HIV since 1996 and working in the field of HIV as a doctor and an activist.
 SHARING ADVOCACY EXPERIENCES: SERBIA, MACEDONIA, CROATIA, TURKEY AND ROMANIA
• This session involved presentations from five different countries on their respective advocacy experiences and successes in terms of access to treatment; it was followed by a panel discussion. Mr. Rade Kuzmanovic, from Q-Club, Serbia, presented results of the Q-Club’s advocacy strategy over the last eight years. The most important milestones were mentioned, including recognition of diagnostics in the official procurement procedures, inclusion of private pharmacies as distributors of medicines and extension of the reimbursement list with four new ARV drugs in 2014. The strategies included creating a network of supporters, constant meetings with decision makers and proper presentation in the media. Mr. Andrej Senih, from Stronger Together, Macedonia, presented achievements in increasing the ART and diagnostics budget, increasing therapeutic

combinations and overcoming stock-outs. The main strategies were explaining the problem to the wider community, meetings with decision makers, letter writing, forming an Inter-party Parliamentary Group on HIV and organizing two public hearings in the Parliament and networking with media. Ms. Sanja Belak-Kovacevic, from the HIV Clinic in Zagreb and Lux Vitae, Croatia, presented their experience with creating the NGO for PLHIV, advocacy actions based on individual cases, involvement of activists in EATG and collaboration with different stakeholders. Mr. Arda Karapinar, from Positive Living As- sociation, Turkey, presented advocacy experience on establishment of the first and only PLHIV association in Turkey and raising awareness of HIV-related issues among stakeholders. In addition, two cases of granting work permits for HIV positive shipmen and enabling HIV positive pregnant women access to healthcare were mentioned as examples of their actions. Mr. Cristian Traicu, from UNOPA, Romania, presented the situation in Romania, including challenges PLHIV in Romania face regarding healthcare coverage, but also increasing numbers of newly detected PLHIV.
 STRATEGIES TOWARDS SOLUTIONS
This session was intended to begin providing answers to two questions:
• Can we address the issues of access at a regional level and how should we do that?
• How can we collaborate in order to make the most of our individual efforts at the national level?
Participants proposed that strategies be developed focusing on:
• Increasing awareness of weaknesses in the health system in order to make it more functional
• Ensuring long-term solutions
• Using regional experiences in particular countries to address similar problems in others where possible (NOTE: there is a unique situation in our region where some countries have national health insurance systems and some do not)
• Building international support
• Forming partnerships and increasing the level of dialogue with different stakeholders
• Working with media
• Educating and empowering patients and healthcare workers

• Collecting robust data on access issues and ensuring a correlation between demand and supply
• Increasing competition and breaking monopoly in the market by inviting different pharma companies to offer their drugs and including private pharmacies in the distribution of medicines
• Ensuring the quality of treatment
• Including the community in the decision-making process
 TOWARD A PUBLIC STATEMENT – PREPARATION AND FINALIZATION OF THE CALL FOR ACTION
At the final stage of the meeting, participants decided to call on governments, pharmaceutical companies, and the affected community to increase their efforts in securing sustainable and quality treatment. The text of the Call for Action was made using a participatory method with vivid discussion about the priorities and formulations. The Call for Action is attached to this report.
 PRESS CONFERENCE
Upon completion of the meeting, the organizers held a press conference in order to send a clear message to the public to stress the importance of accessible HIV treatment and to promote the meeting results. Statements were given by Mr. Andrej Senih, Mr. Nenad Petkovic and Mr. Ben Collins, founder of International HIV Partnerships and consultant in the field of HIV. The press conference was a great success as our statements and the Call for Action were published in several major Macedonian media. A summary of press clippings is attached to this report.

PARTICIPANTS’ PROFILES AND GEOGRAPHICAL COVERAGE
The success of this experience lies in the quality of the group, which presented the following characteristics:
• There was a total of 24 participants: 6 were from Macedonia and 18 from other countries.
• All geographical areas from the region of CE and SEE were represented during the training. They were participants from 18 countries (Albania, Austria, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czech Republic, Greece, Hungary, Kosovo, Macedonia, Montenegro, Poland, Romania, Serbia, Slovakia, Slovenia, and Turkey).
• The participants included representatives of vulnerable groups: PLHIV, MSM, IDU.
• According to the presenters and facilitators, the number selected (24 participants) allowed for maximum participation.
• The meeting involved 17 men and 7 women.
• The group was heterogeneous with respect to their engagement in the field of HIV: participants were from different profes- sional backgrounds and a wide range of experiences.
• A variety of leadership skills was evident among the participants. Participants committed to disseminating the information from the meeting and to considerably influencing the state of access to HIV treatment in their respective countries.
• Further to the evaluation, the results showed that participants significantly improved their knowledge about the state of availability of ARVs in the region, on access issues and the strategies for improvement.

OUTCOMES
The goal of the meeting was not only to enable each participant to increase the understanding about the situation of access to HIV treatment in CSEE but also to identify appropriate advocacy strategies and identify possible joint advocacy initiatives in tackling the complex issue of access to treatment. Therefore it was of a crucial importance that the participants selected would be able to ensure, to a great extent, the effectiveness of this whole experience. The quality of the group that attended this meeting was assessed positively.
One of the key aspects of this meeting was that participants had been involved from the beginning in the meeting’s development and actively took part in the preparation process. Moreover, there was a good group dynamic among the participants as they actively participated in the sessions. Indeed the group selected was very heterogeneous with a significant percentage of the participants having an advanced level of knowledge with respect to various aspects of access to HIV treatment; this was of great value to the meeting. This meeting experience allowed participants to further update their knowledge, exchange best practices and find out about the best strategies necessary for effective community advocacy and actions to ensure continuous access to quality treatment and monitoring tests for people living with HIV. Besides the capacity building dimension of this experience, the chance for further networking is of a crucial importance. The participants made strong connections with each other which will enable quality future interactions.
There was a public dimension of the meeting, in terms of the organization of a press conference and distribution of the Call for Ac- tion to the wider public. The meeting therefore also contributed towards changing the perceptions of HIV in Central and South East Europe, as well as towards an increased public attention to HIV in these low prevalence settings.

EVALUATION
As we are concerned about the quality of the meeting, the participants were requested to fill out an evaluation form rating different aspects of the training on a scale of 1 to 5 (5 for ‘well-exceeded expectations’, 1 for ‘did not meet expectations’). The average overall score is 4.6 out of 5. Here is a summary of the evaluation results:
• Overall expectations
The average score obtained was 4.7 out of 5.
The overall expectations of the participants form the meeting were learning about other countries’ situations in access to HIV and procurements; exchanging experience, practices, data and ideas; identifying problems; putting effort into coming up with joint advocacy plans and having fun.
On the question “How well did the meeting meet your expectations?”, 12 of the participants rated the meeting of expectations as 5 and 5 participants rated it as 4. Participants commented that they have learned a lot, got ideas which they will im- plement back home, heard new perspectives on negotiating in both regional and international environments and expanded their knowledge on HIV treatment.
• Sessions:
The average mark obtained was 4.6 out of 5.
In terms of the sessions on Saturday and Sunday, 11 participants rated the sessions with 5, and 6 rated them with 4. Partici- pants commented that the agenda was well prepared and the sessions were well organized.
• Facilitators:
The average mark obtained is 4.8 out of 5.

13 participants rated the facilitators with 5, while 4 rated them with 4. Participants admired that the facilitators were inter- ested in participating in the working groups, gave feedback, were well prepared, educated and pleasant with skills which helped the participants to be effective.
• Travel arrangements:
In terms of travel arrangements, 11 participants rated the travel arrangements as excellent and 2 participants rated them as good.
• Accommodation:
4 participants rated the hotel as excellent, 9 as good, while 1 rated it as poor. The comments on the accommodation varied from comfortable, clean and good value to a comment that the bed was uncomfortable.
• Additional comments:
In additional comments, the participants stated that they were thankful for all the effort the organizers put into making the meeting happen; the meeting was very motivating to work hard back home; the meeting was only one example that all the participants can work and act together; and they are looking forward to attending the next meeting of this kind.

RECOMMENDATIONS AND FURTHER STEPS
Due to the innovative aspect of this experience in the region and the complexity of the issues concerned, we weren’t able to arrive at answers to all the questions we faced. However, we were able to come up with recommendations and identify some steps for the future.
• Further briefing on generics and originator drugs is needed, including accurate information on excipients (active/inactive in- gredients of the medicines).
• Treatment cascade data from all countries in the region needs to be collected.
• Data from the pre-meeting questionnaire should be updated and shared with all participants.

ANNEXES
AGENDA
DATA FROM THE QUESTIONNAIRE
LIST OF PARTICIPANTS
CALL FOR ACTION
PRESS CLIPPING

Skopje meeting report

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