COUNTRY VISIT REPORT. Country name / Visit Date(s): ROMANIA, 8 th 13 th May 2016

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1 Ref. Ares(2016) /06/2016 COUNTRY VISIT REPORT Country name / Visit Date(s): ROMANIA, 8 th 13 th May 2016 Key outcomes: TB Europe Coalition delegation attended a press conference in support of the Romanian Tuberculosis (TB) Bill Met with 6 Romanian stakeholders involved in TB area and advocacy and identified gaps and/or issues in the country s actions against tuberculosis (e. g: national health insurance issues related to pay of the cost for TB treatment incl. hospitalisation; still noticeable resistance to move from hospital /sanatorium care to ambulatory care; lack of common effort (NTP, NGOs) to support a first ever TB bill; a need of national transition mechanism to domestic financing of TB programme once the international funds finish in ; lack of TB/HIV national coordination) 17 stakeholders representatives participated on the Advanced advocacy for TB civil societies workshop 6 Romanian civil society organisation representatives attended the meeting with the representatives from National Insurance House and 10 representatives met with the Prefect of Bucharest and local authorities of Bucharest Key follow-up actions / recommendations: Romanian civil societies should be more united in support of the TB Bill The National TB Programme to take a stronger leadership on building a national transition mechanism, and on moving from hospital/sanatorium care to ambulatory care A need of a coordination TB and HIV committee it should be initiated by stronger cooperation between the National TB Programme and the National AIDS Programme The local authorities to increase use of civil society organisations to strengthen and expand TB services, especially social services for TB patients The National Insurance House to address promptly an issue effecting TB patients (to cover hospitalisation care for TB patients without an insurance card, prompt issuing of insurance cards etc.) The participants of the workshop to follow-up on the meetings with the decision-makers (National Insurance House (NIH) & Local Authorities) The participants of the workshop to become TB Europe Coalition members in order to benefit from the membership (receive newsletters and updated information, best practise sharing, receive technical support, etc.) Page 1 of 19

2 Report Details Name of Country(is) ROMANIA Date(s) of Visit 8 th 13 th May 2016 Primary Objective(s) Prepared Date 17 th June 2016 Support initiative - first Romanian TB Bill Better understanding of the country s current TB situation To strengthen the ability of civil society in Romania to contribute to national action against TB To help workshop participants learn from the lead-up to and participation in a meeting with key decision-makers Visit Agenda Day 1 (8 th May 2016) Traveling to Bucharest, Romania Day 2 (9 th May 2016) Press Conference in support of Romanian TB Bill the U.S. Embassy in Romania Day 3 (10 th May 2016) Meetings with Romanian stakeholders Day 4 (11 th May 2016) TB Advocacy Workshop Day 5 (12 th May 2016) TB Advocacy Workshop Day 6 (13 th May 2016) Meetings with Romanian decision-makers TB, MDR-TB and TB-HIV Co-infection in Romania Romania with an estimated population of 20 million, almost 20,000 Romanians have various forms of TB (Chart 1). This is by far the largest number in the European Union (EU), accounting for about 25% of all cases in member states. Romania consistently ranked among the countries with the highest rates of MDR-TB in the EU (Chart 2) and in the WHO Europe region. In Romania, a number of XDR-TB cases are almost reaching 60 and only 3.3% of XDR patients are successfully treated (Chart 3). Romania has one of the lowest treatment success rates in the entire world for MDR-TB (20%). Over the past ten years, the overall TB incidence in Romania has dropped steadily. However, even after this reduction, Romania s TB incidence and prevalence eclipse all other EU countries. TB case detection rate (CDR) has been > 70% - for at least 8 years (79% starting with 2010, higher than 76%, which is the CDR in the WHO European Region). Global incidence (GI) decreased by 49.8% (from 142.9% per 100,000 back in 2002 to 71.7% per 100,000 in 2015). GI in children decreased by 55.7%, from 48.1% per 100,000 back in 2002 to 21.3% per 100,000 in Prevalence of TB declined by 39.3% from 200.2% per 100,000 back in 2004 to 121.5% per 100,000 in 2014) (Chart 4) TB mortality rate decreased by 47.2%, from 10.8% per 100,000 back in 2002 to 5.7% per 100,000 in (Source: NTP Romania and Marius Nasta National Pulmonary Institute in Bucharest) The Romanian government approved the National Strategy for TB Control for the period The Page 2 of 19

3 Strategy aims to reduce TB incidence and mortality by providing prevention, screening, diagnosis, treatment and an increased adherence to treatment as recommended by WHO. By 2020, the Strategy aims to ensure universal access to rapid diagnostic methods and diagnose at least 85% of all TB cases, including MDR-TB cases. It also hopes to achieve the successful treatment of at least 90% of new cases, and 85% of retreatments, reduce overall mortality rates and strengthen the health system s capacity to control TB. Previous TBEC Visit The TB Europe Coalition s (TBEC) country visit to Romania in 2011 was one of the first TBEC s visits. The high burden of MDR-TB and TB/HIV co-infection in the WHO Europe region were the main reason why TBEC visited Romania to meet with TB stakeholders. TBEC worked closely with their partners and the visit was coordinated and co-organised by the Romanian Angel Appeal. The TB situation in the country gradually improving, however there is many challenges that the country still faces. Background on 2015 visit In 2015, TBEC received a one-year grant (within a three year framework agreement) from the European Commission to strengthen its operational activities, which includes a visit to an EU country. This country visit is particularly important both as an outreach tool and as a means to build the capacity of civil society at national level. Romania has been identified as the priority country for 2016 due to its high number of MDR-TB cases and the lowest treatment rate in the European Union and in the WHO Europe region. Chart 1: TB Incident rate in WHO Europe region in 2014 (ECDC, TB Surveillance Report 2016) Page 3 of 19

4 Chart 2: Number of MDR TB cases in the European Union in 2014 (ECDC, TB Surveillance Report 2016) Chart 3: Number of XDR TB cases in the European Union in 2014 (ECDC, TB Surveillance Report 2016) Page 4 of 19

5 Chart 4: TB Prevalence in Romania (NTP, Marius Nasta National Pulmonary Institute in Bucharest) Press Conference Romanian TB Bill (9 th May 2016) The Association of MDR-TB Patients Support (ASPTMR) together with the U.S Embassy organised a press conference in support of the legislation initiative on prevention and control of tuberculosis in Romanian TB Bill. The bill has been prepared by the Romanian Angel Appeal and ASPTMR with support of other civil societies active in TB issues. The main provisions of the bill: Psycho-social services for TB patients; Universal access to rapid diagnostic and treatment including DOT; Paid medical leave and allowance for temporary work incapacity during all treatment for all TB patients, irrespectively of their contribution to social fund; Monthly food allowance for the entire duration of the treatment; TBEC delegation attended the conference and presented on an importance of civil society engagement and collaboration with decision-makers in the fight against TB. *See agenda Annex 1 Preliminary meetings with Romanian stakeholders (10 th May 2016) Participants: TBEC representatives from abroad (3 representatives) TBEC representatives from Romania (1 representative) Page 5 of 19

6 Representatives from the following Latvian stakeholders: *For a detailed itinerary, please see Appendix A2 The TBEC Delegation met with five Romania stakeholders active directly or indirectly in TB and TB/HIV area. The main goal of the preliminary meetings was to learn about the current TB situation in Romania directly from a range of stakeholders involved in TB action and identify gaps and/or issues that require more attention and better solutions in order to improve TB services for TB patients. The outcome points from the meetings: o Transition from hospital based care to ambulatory care there are 6 piloting programmes currently o Almost all NTP activities are underfinanced an issue that can create even bigger problems once international donors finish financing TB activities in the country o Lack of local authorities involvement in TB services o NTP does not feel the Romanian TB Bill is something they would like to support; they expressed a lack of cooperation and discussion o Only 1500 patronage nurses (community workers) in the country o Instability in the health sector frequent resignation of ministers o Lack of media attention on TB issue in the country using more social media channels for awareness rising (e.g.: Facebook, Twitter, Websites, etc.) o Need for better cooperation between TB care providers and social services o No enough resources allocated for psycho-social support for TB patients o MDR TB and XDR TB still a huge issue in Romania o Issue with access to all needed drugs (especially for MDR TB) due to current legislation processes o There is not coordination between TB and HIV national programmes that would improve services for TB/HIV patients o 9 regional HIV centres in Romanian that provide also psychological support o new HIV cases per year (steady since 2001) o HIV services improved significantly in past years, however there is a lack of TB/HIV integration o National Insurance House does not pay for hospitalation of TB patients, when a patient does not have an insurance card huge issue for marginalised groups o Social contracting happening, but it is funded by foreign grants, no government funds available o Biggest international donors for TB services in the country Global Fund, Norwegian Fund Romania has made a significant progress in TB prevention, diagnostic, treatment for the last decade. However, there are still few gaps to fill and improvements to make for Romania to exit the group of countries with the highest rates of MDR-TB in the world. TB Advanced advocacy Workshop (11 th 12 th May 2016) Participants: 17 representatives from Romanian civil society organisations, governmental institutions, and former TB patients 3 TBEC facilitators *For a full participant list, please see Appendix A4 The TB Europe Coalition, together with Romanian Angel Appeal, organised the Advanced advocacy for TB civil societies workshop. The workshop programme was split throughout two days, followed by two meetings with key decision-makers from the National insurance House and the Local authorities on the third day. *For a detailed workshop programme, please see Appendix A3 Objectives of the workshop: - To enhance civil society activists ability to engage in TB advocacy at this critical stage in Romania (TB Bill) - To emphasise the role of TB patients and activists in developing awareness of the need for action Page 6 of 19

7 against TB - To assist in the development of increased co-ordination and action plans among civil society groups and organisations - To help participants learn from the lead-up to and participation in a meeting with key decision-makers the day after the workshop All participants were individuals active in civil society organisations, and former TB (MDR TB) patients that are already or could become involved in action on TB, as many of them work with HIV positive people and could potentially expand their role into TB, as the most serious disease commonly affecting individuals living with HIV. The workshop programme was adopted and adjusted according to the specific needs of participants and to the finding identified during our preliminary meetings with the stakeholders on the first day of the country visit. The two-day event was evaluated by the participants. The eleven evaluations, which were collected, can be summarised as follows: i. 9 out of 11 participants indicated that the workshop met their expectations and was relevant to their role and work; 1 participant felt that the workshop was not advanced for her/his knowledge and experience ii. All 11 participants stated that their understanding of Advocacy strategy after the workshop is good, very good or excellent iii. 81% of participants were more confident in how to engage decision-makers iv. 90% of participants felt that now they have good understanding of challenges civil society organisations face in TB advocacy v. The collected responses showed that all 11 participants rated the communication and information provided before the workshop as good and sufficient vi. 1 participant felt that the workshop was too long and 2 participants indicated that the workshop was too short. Participants would prefer (according to comments) shorter days and spread through 3 or 4 days. vii. There was 100% satisfaction with the venue (facilities, room, stationeries, etc.) Meetings with decision-makers (13 th May 2016) Participants: 3 TBEC representatives from abroad 6 Romanian civil society organisation representatives attended a meeting at the National Insurance House 10 Romanian civil society organisation representatives attended a meeting with the Local authorities The last day of the country visit the meetings with decision-makers was a result of two days of intensive work and preparation during the workshop. The participants agreed on few main and important points, which they were prepared to communicate to the National Insurance House and Local Authorities. The TBEC delegation participated at the meetings, but the each group was lead by a member of the civil society representative. Messages for the meeting with the National insurance House: Access to medical services for all, incl. TB patients with no ID or an insurance card patients are refused to be hospitalises; hospitals are not reimbursed hospitalisation costs Family doctors are paid per patient, not according to the services provided TB patients required more care, which is more expensive ASKs for the meeting with the National insurance House: Written document signed by the NIH clarifying that they will take responsibility for reimbursement of Page 7 of 19

8 all costs related to TB services to hospitals To include DOT in a contract with family doctors to ensure fair pay for TB services provided Messages for the meeting with the Local Authorities TB in Bucharest still exists and it is an issue concerning everybody in the city In Bucharest there is high default rate Lack of measures for social re-integration for TB patients after the treatment in Bucharest there is only 6 community workers (2 roma mediators and 4 community nurses) ASKs for the meeting with the Local Authorities: Collective awareness campaign an open call for all civil society organisations to implement a project on information campaign Reimbursment of travel cost for TB patients on treatment Local authorities decision to establish a network of community worker within public health department to assist TB patients Social ambulance to look for vulnerable groups Each meeting with the decision-makers on last approximately 60 minutes, where all civil society representatives communicated their points and issues related to the current situation on tuberculosis in the country. The officials acknowledged that there are rooms for improvement; The civil society representatives expressed their willingness to collaborate and contribute into a concrete actions plan. Debrief on the meeting The both meetings went very well and the wokshop participants were well prepared. They had a chance and platform to express their messages and asks. For many of the civil societies participants it was a first time meeting representatives from NIH or local authorities. All participants expressed their satisfaction with the meetings. Positive points: The meeting was attended by the prefect of Bucharest Open to discussion The meetings opened the door for future engagement First face-to-face discussion with official for some of the participants The points of concerns: No main decision-makers attended the meetings (especially from the NIH) Lack of commitment from the local authorities and NIH There should be more mutual interest, among civil society organisations to communicate more and cooperate together on TB actions and TB advocacy. Appendices: A1 Press Conference Agenda A2 Stakeholders Itinerary A3 TB Advocacy Workshop Agenda A4 Workshop participant list A5 - Photos Page 8 of 19

9 Appendix A1 Press Conference Agenda Page 9 of 19

10 Appendix A2 Stakeholders Itinerary ww.tbcoalition.eu Stakeholders meeting Itinerary Tuesday, 10 th May 2016 TBEC delegation: Paul Sommerfeld TBEC, Steering Committee Member & TB Alert, Chair (UK) Cristina Enache TBEC, Member & Romania Angel Appeal (Romania) Mira Cerulova TBEC Coordinator (UK) Rachael Crockett TBEC, Policy Advocy Officer The National Tuberculosis Programme The National Romanian Angel Appeal (RAA) & ARAS Dr Victor Spinu, NTP Manager Ms Mihaela Stefan Dr Mariana Mardarescu, Head Doctor of the Pediatric HIV Matei Bals Infectious Diseases institute Dr Sorin Petrea, Medical Director Matei Bals Infectious Diseases institute Prof Adrian Streinu-Cercel, General Manager Matei Bals Infectious Diseases Institute Lunch Mr Iulian Petre, General Manager Mrs Daniela Mania, Project Assistant Mr Andrei Dobre, M&E Officer and Global Fund RAA Ms Cristina Enache, Project Manager RAA Ms Monica Dan, Project Coordinator & Psychologist ARAS Page 10 of 19

11 Appendix A3 TB Advocacy Workshop Agenda ww.tbcoalition.eu WORKSHOP: ADVANCED ADVOCACY FOR TB CIVIL SOCIETIES BUCHAREST 11th 13th May 2016 Address: Romanian-American Foundation, 6 Gina Patrichi (former Orlando) Street, Bucharest 1 Purpose of the workshop The main purpose of the workshop is to strengthen the ability of civil society in Romania to contribute to national action against tuberculosis through the facilitation of this two-day advocacy workshop, followed by meetings with key decision-makers in Romania on 13 th May Facilitators and Contributors - Cristina Enache Romanian Angel Appeal Foundation, Romania - Rachael Crockett RESULTS UK and Secretariat TB Europe Coalition (TBEC), United Kingdom - Paul Sommerfeld Member, Steering Committee TBEC & Chair, TB Alert United Kingdom - Miroslava Cerulova RESULTS UK and Secretariat TBEC, United Kingdom DAY 1 (WEDNESDAY, 11 th May) PROGRAMME Session no. 1 Registration & Introduction 10:00 10:45 Time Trainers / facilitators introduction & Workshop aims 5 Participants introduction 15 Participants hopes and expectations 25 Session Setting the Scene no. 2 10:45 11:15 TB Europe Coalition (TBEC) 5 TB: The Global and Regional overview of TB situation 10 TB today in Romania 15 Time: 45 mins Time: 30 mins Page 11 of 19

12 Coffee break 15 minutes Session Reflection on Monday Press Conference No What was effective / ineffective 30 Session Mapping TB advocacy in Romania no. 4 12: Mapping organisations engaged in TB action in Romania Consider gaps and strengths, including patient involvement Planning possibilities for co-ordination networks 30 Time: 30 mins Time: 1hr 30 mins Group exercise and plenary discussion 60 Lunch break: 60 minutes 13:00 14:00 Session no. 5 Advocacy Skills and Experience 14:00 15:00 Time: 60 mins The stages of Advocacy 15 Sharing advocacy experiences 45 Session no. 6 Budget Advocacy 15:00 16:00 Time: 60 mins Targeting an organisation/agency 10 Group exercise and plenary discussion 50 Coffee break 15 minutes 16: Session no. 7 Working with Government How do parliament, government and Ministries work as 45 regards decisions relating to TB Session Closing of Day 1 no. 8 17:00 17:10 Closing of Day 1 10 Time: 45 mins Time: 10 mins DAY 2 (THURSDAY, 12 th May) Session no. 9 Reflection on Day 1 10:00 10:10 Trainers / facilitators RECAP 10 Session Working with Media no :10 11:00 TB in Media 20 Communication & TB 30 Coffee break 15 minutes 11: Session Face-to-Face Advocacy no : Time: 10 mins Time: 50 mins Time: 1 hrs and 45mins Page 12 of 19

13 Importance of a clear Ask and Messages 15 Preparing for and then meeting decision-makers 1h 30 Lunch break 1 hour Session Preparing for the meetings on Friday no Understanding the context; Sharing information 15 Developing the messages 60 Coffee break 15 minutes Planning the meetings 60 Session no. 13 Workshop evaluation and closure 16:30 17:00 Evaluation 20 Farewell exercise 10 Time: 2 hrs 30mins Time: 30 mins DAY 3 (FRIDAY, 13 th May) Session No.14 Meetings with decision-makers Meeting with The National Insurance Meeting with Local Time: 4 hrs 30 mins 60 mins 3 TBEC representatives + Romanian representatives 60 mins 3 TBEC representatives + Romanian representatives 75 mins 3 TBEC representatives + Romanian representatives Page 13 of 19

14 Appendix A4 Workshop Participant List TB Europe Coalition Advanced Advocacy for TB Civil Societists Workshop in Bucharest, Romania 11 th 13 th May 2016 List of Participants & Facilitators No Name Organisation Position 11 th - 12 th 13 th Alexandra ARAS Alexandraluca80@gm 1 Luca Social worker ail.com YES NO Monica ARAS monicdan@gmail.com 2 Dan Psychologist YES YES Bogdan ARB-TB bogdan7zaharescu@g 3 Zaharescu Coordinator mail.com YES YES Liliana ARB-TB geruliliana@gmail.co 4 Geru Coordinator m YES NO Catalina ASPTMR Catalina_constantin20 5 Constantin Director 00@yahoo.com NO YES 6 Stefan Radut ASPTMR Vice president stefan_radut@yahoo. com YES YES Ancuta ASPTMR Anca_pruteanu78@ya 7 Capalau Volunteer hoo.com YES YES Ana Carusel Ana.pogangeanu@car 7 Pogangeanu Social worker usel.org YES NO Ioana Carusel ioana.pinzariu@carus Pinzariu Social el.org 9 assistant YES NO Ioana CPSS Programme idaramus@cpss.ro 10 Daramus director YES NO Monica CPSS mghita@cpss.ro 11 Ghita AMC expert YES NO Ionut Parada i.jugureanu@paradaro 12 Jugureanu Director mania.ro YES YES Iuliana RAA Iuliana.Copil@raa.ro 13 Copil Assistant YES YES Coralia Salvati Copiii 14 Neagu Psychologist YES NO Sorina Salvati Copiii sorina.fekete@salvati 15 Fekete Psychologist copiii.ro YES YES 16 Daniel Ungureanu Salvati Copiii Social assistant ungabrielb@yahoo.co m YES NO Iulian UNOPA iulian.petre@unopa.r 17 Petre Director o YES NO 18 Daniela Manea UNOPA Project assistant Daniela.manea@unop a.ro YES YES 19 Paul Sommerfeld TBEC / TB Alert Facilitator chair@tbalert.org Yes Yes 20 Cristina Enache TBEC / Romanian Angel Appeal Facilitator Cristina.Enache@raa.r o Yes Yes 21 Rachael Crockett TBEC / Facilitator Rachael.crockett@res Yes Yes Page 14 of 19

15 22 Miroslava Cerulova Results UK TBEC / Results UK Facilitator ults.org.uk mira.cerulova@results.org.uk Yes Yes Page 15 of 19

16 Appendix A5 Photos Photo 1: Workshop participants introduction Photo 2: Workshop presentation on media and advocacy Page 16 of 19

17 Photo 3: Workshop activity group work Photo 4: Workshop activity mapping stakeholders Page 17 of 19

18 Photo 5: Workshop discussion Photo 6: Meeting with the officials from the National Insurance House Page 18 of 19

19 Photo 7: Meeting with the officials from the Local Authorities Photo 8: Debrief session after the meetings This report is the product of an activity that has received funding under an operating grant from the European Union s Health Programme ( ). The content of this report represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains Page 19 of 19