Pilot Countries View from the Civil Society

1. Pilot CountriesView from the Civil Society MeTA Ghana MeTA Philippines MeTA Jordan MeTA Uganda MeTA Kyrgyzstan MeTA Zambia MeTA Peru

2. MeTA Ghana Presenter: Charles Allotey Executive Director-Health Access Network Ralph Ahiabu Director of Programs - DeSMAS

3. Summary Analysis at start of MeTA What were the needs and issues in your specific sector at the start of MeTA? Lack of organized civil society coalition directly involved in issues related to access to medicines. Lack of capacity among civil society organizations to deal with medicines issues, especially where technical in nature. Ignorance among community members on issues surrounding medicine prices, quality, availability and access in general. Patients and consumers lacked information and power to realize their rights to healthcare and medicines - e.g. rights in Patient’s Charter, benefits and quality of care under National Health Insurance Scheme. Inadequate linkages and collaboration between the public, private and civil society sectors.

4. Major milestones What milestones have been achieved during the MeTA pilot phase? Built network and made linkages amongst civil society organizations across all 10 regions of Ghana. Enhanced capacity of network members on access to medicines and transparency issues - e.g. workshops at various levels. Established online social network (NING Group) to facilitate communication and mutual visibility of network members. Launch of Ghana MeTA Civil Society Group by the Deputy Minister of Health. Developed 4 educational posters targeted at consumers on relevant medicines issues in Ghana – translated into 7 major local dialects. Undertook community awareness-raising activities, including public fora and radio programs. Held a detailed mid-term review; developed forward plans for 2010-11. In sum: We have achieved a lot, with limited resources. And more is planned!

5. Successes What were the successes for your sector during the MeTA pilot phase? Enthusiasm has been created among community groups who are now able to engage in discussions on medicines issues. Trust and collaboration are emerging between CSOs and public sector agencies on transparency and access to medicine issues. We have enhanced awareness among consumers on patients responsibilities, counterfeit and substandard medicines, and the rational use of medicines. We have a database and linkages at national, regional, district and community levels that will facilitate information sharing and joint advocacy, right across the country.

6. Challenges What challenges has your sector endured during the MeTA pilot phase? Sustaining interest of network members to engage actively in the MeTA process following the establishment of the network. Aligning individual and organizational interests of network members to the core objectives of MeTA. Demands made on members engaged in the organizational process were very high due to the sacrificial nature of the work. Limited resources constrained the creative and innovative ideas that would have enriched the overall outcome. For example, we had hoped to engage in some operational research on medicine related issues in communities nationwide. This would have engaged network members proactively, resulting in (bottom up) data to complement that at policy level (top down).

7. Lessons Learned What are the lessons that your sector has learned from MeTA? Non-health professionals within the CSO network are able to engage with a wide range of stakeholders and the media on issues relating to transparency and access to medicines – The CSO network includes those working on governance, corruption, women’s rights, children’s rights, community health, etc. The CSO sector is gaining valuable knowledge and experience through participation in the MeTA multi-stakeholder process. Working with different stakeholders is possible and offers a better opportunity to address challenges than one stakeholder group acting alone. **For example, on [issue x]** Opportunity created through the MeTA process to work with people with diverse professional backgrounds, skills and expertise resulted in achieving better outcomes. **For example…we achieved…**

8. Thank you Name of presenter Charles Allotey Job Title Ghana MeTA CSO Group Coordinator Email: kallotey@gmail.com, han.ghana@gmail.com Mobile number: +233 (0)244280284 Skype: kallotey Website: www.hanghana.org

9. MeTA Jordan Dr Abdel Fattah Al Kilani MeTA Council Member

10. MeTA CSO Sector overview A total of 240 societies are registered officially in the ministry of social development, yet not all are active neither represents patient groups The history in working with the Civil Society Organizations in Jordan started in March 2008 when (HAI) facilitated a meeting/workshop for the CSO with the objective of bringing civil society groups together to take a decision as a group to form an independent alliance that will work effectively to enhance its role in policy planning and presenting the WHO/HAI survey results to them

11. Summary Analysis at start of MeTA Limited CSO role in influencing healthcare strategies and policies in Jordan Limited effectiveness and authority in solving patients’ problems regarding availability and affordability of medicines Major limitation on the CSO’s fundraising ability due to restriction by the Ministry of Social Development on the number of fundraising events (only two annually) There is an absence of coordination or sharing of expertise and experiences among the various CSOs

12. Summary Analysis at start of MeTA Cont. At the early stage of MeTA, the MeTA/ CSO committee has identified the following areas to include in the CSO workplan: Priority Area 1: Engaging Civil Society Organizations (CSOs) to work together on promoting Transparency in the Medicines Supply Chain and improve Access to Medicines Priority Area 2: To continue to build capacity among CSOs to analyze data and explore and recommend policy options around medicines availability and affordability, promotion and prescribing practices, RDU and the use of generics Priority Area 3: Communication and Coordination

13. Major milestones The very first activity was conducted to map and identify CSOs to assess their ability and willingness to work together and to engage them with the MeTA council, this activity has set the baseline work for the CSOs in Jordan Workshop on building capacity of CSOs in order to strengthen their ability to monitor and increase accountability of all stakeholders regarding medicines prices, availability, selection and quality of medicines in the public and private sectors . The main objective of the workshop was to introduce CSOs to medicines regulations and health polices Participate in the Harvard Flagship course Participate in the country exchange visit to the Philippines Conduct a training on advocacy and communications in improving access to essential medicines

14. MeTA Success The MeTA Council has identified Building capacity in pharmaceutical policies for CSOs as one of its three main areas in the country workplan The CSO committee has drafted a CSO workplan according to the three major priorities in the overall national MeTA workplan in Jordan, “Build capacity of (CSOs) to monitor and increase accountability of all stakeholders concerning the prices, availability, selection and quality of medicines in the public and private sectors The specific CSO workplan was approved and a MOU has been signed CSOs are engaged in the MeTA initiatives A nucleus of CSO coalition started to form

15. Success Cont. The CSO level of engagement with the MeTA process is moving forward gradually At the start of the process there was limited activities and meetings but since November 09 they became more engaged The CSO representative and patient groups actively participated in all MeTA Jordan activities ( MeTA launch, MeTA forum, many workshops) The voice of patient is becoming heard from policy makers in the public sector/ example MS patient society Patient group representatives has 2 seats in the MeTA council A workshop on advocacy and communication was organized for CSOs with emphasis on team building activity, communication skills, persuasion & negotiation skills, advocacy, how to form a Coalition and engagement with the Media

16. MeTA Challenges Poor role of the CSOs in the decision making process Few of the patient groups societies budget is partially supported by pharmaceutical companies CSOs are still not represented in medicines related committees such as : the pricing committee, higher drug committee / JFDA Limited CSOs role in improving patient counseling Encouraging new patient groups societies to join the coalition is a challenge Shortages of medicines availability in public health and high prices of medicine in the private sector

17. Challenges Cont. Limited participation of CSO representatives in Data disclosure survey tool MOU has taken some time to be approved and signed, accordingly funds were not available for CSO until a later stage CSOs need a coordinator to follow up on the activities listed in their work plan Reach a common understanding on the role of the patients focusing on the regulations ,distribution of medicines and rational drug use

18. Lessons Learned A budget for a CSO coordinator should have been listed in the CSO workplan CSO engagement with the MeTA process complements the overall picture and highlights patients’ need Capacity for CSOs to engage more effectively needs to be built To engage parliament in the MeTA council process There should be an organized structure for the CSO coalition and the CSO already started working towards forming an organized way on, also formed a three committees on their meeting on the 22 June 2010

19. Lessons Learned Cont. More participation of CSO representatives in Data disclosure survey tool should have been considered To involve media more The stakeholders started to understand each others perspectives CSOs realized that this should have been happened earlier The CSO engagement with the process complement the overall picture and uncovers the patients’ needs

20. Examples of Interested Civil Society Organizations

21. Thank you Dr Abdel Fattah Al Kilani Consumer Protection Organization Representative Email jor_vet_asso@yahoo.com Mobile number +962 799958059 Website www.meta.jo

22. MeTA Kyrgyzstan Burul Makenbaeva CSO Coordinator, Kyrgyzstan

23. Summary Analysis at start of MeTA What were the needs and issues in your specific sector at the start of MeTA? Mission ofMental Health and Society is the return of people with mental disorders into the community of closed psychiatric institutions. Access to medicines in the communityis a main matter. Since 2006 Drug Package of SGP for patients with mental disorders has been implemented at the primary health care level but patients were not informed And a high level of mistrust between the sectors, the myths and stereotypes from all parties The lack of communication between NGOs and the public sector: only letters - ineffective communicationEverything was a thick and gray clouds!

24. Major milestones What milestones have been achieved during the MeTA pilot phase? Establishment of CSO Coalition, trainings and small grants surveys Studies have begun sowing clouds, the picture became more clear, what works and how, and why if not working The regular communication is created Building trust and respect

25. Successes What were the successes for your sector during the MeTA pilot phase? NGOs participate in public procurement process at the national level The initiative of NGO inclusion comes from government All Coalition members have full access to information Building trust with the public media, local authorities, local community

26. Challenges What challenges has your sector endured during the MeTA pilot phase? Lack of capacity and knowledge on drug circulation and lack of legal capacity The diversity of interests and different ideas of how to act in coalition  Discussion took a long time and it was a risk to lose interest Change Leadership

27. Lessons Learned What are the lessons that your sector has learned from MeTA? Identification of interests and motivations Maintaining a balance of interests to develop a unified strategy Solidarity and broad cooperation including the International MeTA The necessity to react quickly to unforeseen difficulties Flexibility Full involvement of stakeholders from the beginning

28. Lessons Learned Topics: Availability of psychotropic medicine under the State Guarantee Program in Bishkek and Osh Cities. (PF Public Health in partnership with PF New View on Mental Health). Availability of medicine under the State Guarantee Program in rural areas based on the example of Kochkor District, Naryn Province (PF Harmony Plus in partnership with Village Health Committee (Kochkor District, Naryn Province), PF Etiyat (Issyk-Kul Province) and NGO Door Eli (Bishkek). Availability of vitally important medicines in children’s residential institutions (League of Child Rights Defenders) Study of State Procurement Practice at the National Cancer Center (PF People Living with Chronic Myeloleukemia) Rationality of medicine use at Bishkek hospitals based on the example of Hospitals #1 and #6 (NGO For Safe and Rational Use of Medicine) Availability of diabetes medicine in Chui Province. 09/09/2014 28

30. 09/09/2014 30

31. MeTA Peru Marco Alegre Romero – Coordination CSOs

32. Analytical Summary at the beginning of MeTA What were the needs and problems in this specific sector at the beginning of MeTA? 43% of the country's population lacks access to essential medicines. CSOshadnotfluentaccesstoessentialcriticalinformationbythestate and theprivate sector in relationtoaccessto medicines. Therewas limited space for Civil Society participation to generate public policy on essential medicines. Absence of a National Policy for Generic Medicines. Weakness in the mechanisms of transparency and accountability of public administration in the early stages of the medicines supply chain.

33. Main mailstones What milestones have been reached during the MeTA pilot phase? • Being able to start working together to address access to generic medicines, between the State, Civil Society and Private. • Forming a Coalition of Civil Society Organizations • Tobeabletoformulate a national project by the CSOs Coalition and users, to train leaders in monitoring access to medicines.

34. Successes Which were the successes of the sector during the MeTA pilot phase? • Raise the issue about lack of access to medicines at national and regional levels. • Reachanagreement with the University for the development of post-graduate courses to train leaders in monitoring access to medicines. • Manage to jointly formulate a project that contribute to access of medicines among the national and regional CSOs • Theengagement of 18 out of 25 regions of the country in the implementation of the project

35. Challenges Whatchallenges has this sector confrontedduringthe MeTA PilotPhase? • To provide a better positioning of the CSOs on the National Council and the Executive Board of META Peru. • To achieve a cohesion between CSOs – Users, and technical people. • To engage active leaders in monitoring access to medicines at the national level articulated in the network.

36. Lessons Learned What lessons has this sector learned from MeTA? • You can better address the problem of access to essential medicines when working in collaboration with the state, civil society and the private sector. • TheCivil Society can improve the quality of dialogue and negotiation with the public and private sector when it has continuous access to information. • TheCivil society is divided according to the interests of each of its members. • The regions of Peru would like to address the problems ofaccess to essential medicines but do not have strategies and information to give an appropriate response.

37. Thank you Marco Alegre Romero C-electrónico: malegre84@yahoo.com Número Celular: (51) 1997273931 Skype: Página Web: www.forosalud.org.pe

38. MeTA Philippines Cecilia C. Sison Coordinator, Coalition for Health Advocacy and Transparency Secretary, MeTA Council - Philippines

39. Summary Analysis at start of MeTA What were the needs and issues in your specific sector at the start of MeTA? Loose network of CSOs with an overriding agenda, despite differences in programs, priorities & mode of engagement Common advocacy to improve access to low-priced medicines and better health services for the poor Range of specific concerns: patients’ rights, high medicine prices, parallel importation, restrictions in current IPR Code Generally, adversarial stance towards MNCs Disappointment over inefficiencies and inconsistent efforts of government to champion patients’ rights Efforts focused on ensuring passage of the Cheaper Medicines Law, after it was bypassed in previous Congress

40. Major milestones What milestones have been achieved during the MeTA pilot phase? • Organization of the Coalition for Health Advocacy and Transparency (CHAT); membership expansion • Representation of the CSO sector in the MeTA Council • Participation in government-initiated advisory and oversight committees for Cheaper Medicines Act • CHAT Discussion Series, CHAT Official Statements, individual CSO research & advocacy projects, skills training • Engagement in multi-stakeholder programs, discussion groups and advocacy activities

41. Successes What were the successes for your sector during the MeTA pilot phase? • Engagement as a co-equal stakeholder • Recognition as the health coalition in the CSO community, and the voice of patients and consumers • Deeper appreciation of a range of concerns: quality, health financing, marketing and promotion, regulation, price control • Broader appreciation of the perspectives of other stakeholders • Access to resources / funding to implement programs

42. Challenges What challenges has your sector endured during the MeTA pilot phase? • Sustaining interest of members to participate in activities • Low budget utilization and delayed implementation of projects in current Work Plan • Need to increase public awareness of CHAT advocacies and programs • Expansion of membership base to the regions • Implementation of individual CSO projects • Need for direct and quick access to funds for projects and operations

43. Lessons Learned What are the lessons that your sector has learned from MeTA? • Maximizing varied roles of civil society : watchdog, disseminate information by maximizing reach, feedback from the grassroots, support govt & industry initiatives • Importance of trust, transparency and openness when interacting with other stakeholders and groups • Synergy can result when groups of varying perspectives work together on a common advocacy • Continuous dialogue helps stakeholders better appreciate positions and motivations of other groups • Exchange of information with similarly situated groups must be encouraged

44. Thank you Cecilia C. Sison CSO Coordinator Email: ceciliacsison@yahoo.com Mobile number: +639175295718 Website: www.metaphilippines.org.ph

45. MeTA Uganda Rosette Mutambi CSO Coordinator

46. Summary Analysis at start of MeTA What were the needs and issues in your specific sector at the start of MeTA? Access to medicines:- Availability of medicines; Medicine prices; Monitoring and accountability; Rational use Create public awareness; increase transparency in medicine supply chain (policy and practice), roles of key medicine sector institutions (NDA,NMS etc) CSO coordination and communication Capacity building of CSOs for effective participation in medicine sector Representation of CSOs on the different decision making structures

47. Major milestones What milestones have been achieved during the MeTA pilot phase? Two CSOs HEPS and Uganda National Health Consumers Organization (UNHCO) were selected to sit on MeTA Council Rosette Mutambi (Executive Director HEPS) was chosen as first rotating Co-Chair of MeTA Uganda Council. At inception of MeTA in early 2008, HEPS was chosen to present CSOs on Ministry of Health Technical Working Group on Medicines Procurement and Management CSOs empowered to meaningfully participate in the planned multi-stakeholder activities in Uganda and feel more comfortable to engage with national policy processes MeTA has provided CSOs with access to government bodies Work plan on track

48. Successes What were the successes for your sector during the MeTA pilot phase? For the first time ever, the Ministry of Health invited CSOs to the National Pharmaceutical Sector Strategizing Workshop in July/ August 2009 Increased public debate and reporting on medicine issues for example stock outs Increased collaboration between government bodies, private sector to improve access to medicine MeTA council provided useful input into materials used for the Stop Stock outs campaign Shared responsibility among CSOs in implementing work plan

49. Challenges What challenges has your sector endured during the MeTA pilot phase? Constant communication which is required to maintain interest and to keep members updated on MeTA issues is a challenge High member expectations of funding District CBOs not yet aware of MeTA Increased pressure from public to CSOs to demand/cause change

50. Lessons Learned What are the lessons that your sector has learned from MeTA? There is shared responsibility by all stakeholders to increase access to medicines and all sectors have a contribution MSP helps sectors to understand role of others and their key competencies in improving access to medicines MSP important in increasing transparency and accountability An enlightened Civil Society is crucial to advocacy