Dr. Bader B. Rashid Consultant Pharmacist MeTA Council Member / H.A.I. Representative MeTA & Civil Society Organizations Alliance MeTA Council Sub-Committee III:

Committee Members Dr. Bader B. Rashid – Chairing the Sub-Committee Dr. Taher Shakhshir – Chairman/ Pharmacists’ Association Dr. Mu’men Hadidi – Representing the Physicians’ Association Dr. Iman Madi – President / Multiple Sclerosis Society Dr. Abdul-Fattah Kilani- Jordan Society for Consumer Protection Dr Rania Bader- MeTA Consultant All members signed on Declaration on Conflict of Interest (same with other MeTA sub-committee members)

Dr. Bader B. Rashid – Chairing the Sub-Committee

Dr. Taher Shakhshir – Chairman/ Pharmacists’ Association

Dr. Mu’men Hadidi – Representing the Physicians’ Association

Dr. Iman Madi – President / Multiple Sclerosis Society

Dr. Abdul-Fattah Kilani- Jordan Society for Consumer Protection

Dr Rania Bader- MeTA Consultant

All members signed on Declaration on Conflict of Interest (same with other MeTA sub-committee members)

Acknowledgement Sub-Committee III acknowledges and thanks: * Ms. Samia Sa’ed/ MeTA Consultant * Ms. Cecilia Muxi/ Civil Society Specialist for their valuable contributions to Sub-Committee III

Sub-Committee III acknowledges and thanks:

* Ms. Samia Sa’ed/ MeTA Consultant

* Ms. Cecilia Muxi/ Civil Society Specialist

for their valuable contributions to Sub-Committee III

AIMS of MeTA To use a multi-stakeholder approach towards increasing transparency around the regulation, selection, procurement, pricing, sale, distribution and use of medicines.

To use a multi-stakeholder approach towards increasing transparency around the regulation, selection, procurement, pricing, sale, distribution and use of medicines.

The meaningful participation of the civil society in these multi-stakeholder activities is critical to the success of the process. Role of the Civil Society

How MeTA empowers Civil Society (I) By making participants in the CSO Alliance be prepared and comfortable to engage with national policy processes By making participants acquire specific knowledge on issues related to access to medicines, in particular transparency, accountability and efficiency issues

By making participants in the CSO Alliance be prepared and comfortable to engage with national policy processes

By making participants acquire specific knowledge on issues related to access to medicines, in particular transparency, accountability and efficiency issues

How MeTA empowers Civil Society (II) By making participants more skilled to promote greater transparency & accountability By strengthening the networking in the country By developing ideas on campaigns and advocacy on medicines issues for use within the country

By making participants more skilled to promote greater transparency & accountability

By strengthening the networking in the country

By developing ideas on campaigns and advocacy on medicines issues for use within the country

MeTA Council (Jordan) MeTA Jordan is multi-stakeholder Civil Society is currently represented on the Council through: - Health Action International/ Dr. Bader B. Rashid - the Multiple Sclerosis Society - Jordan Society for Consumer Protection

MeTA Jordan is multi-stakeholder

Civil Society is currently represented on the Council through:

- Health Action International/ Dr. Bader B.

Rashid

- the Multiple Sclerosis Society

- Jordan Society for Consumer Protection

Who Qualifies for the CSO Alliance? Civil Society organizations who are ABLE and WILLING. Societies active in providing health or medical services Patients groups/ societies Consumer Societies, Groups, NGO’s, organizations who can contribute positively to the vision of MeTA process/ CSO Alliance

Civil Society organizations who are ABLE and WILLING.

Societies active in providing health or medical services

Patients groups/ societies

Consumer Societies, Groups, NGO’s, organizations who can contribute positively to the vision of MeTA process/ CSO Alliance

Priority Areas for MeTA Build capacity of civil society to monitor and increase accountability for the prices, availability, selection and quality of medicines in the public and private sectors. Develop and use medical evidence as the main criteria for the removal and addition of medicines to the RDL and develop an improved mechanism for monitoring the effectiveness of medicines using transparent measurement criteria. Improve rational use of medicines, led by the newly formed RDU Dept. at the JFDA. This could include consolidation and implementation of Standard Treatment Guidelines and work with physicians to improve prescribing behavior (e.g. through continuing medical education programmes)

Build capacity of civil society to monitor and increase accountability for the prices, availability, selection and quality of medicines in the public and private sectors.

Develop and use medical evidence as the main criteria for the removal and addition of medicines to the RDL and develop an improved mechanism for monitoring the effectiveness of medicines using transparent measurement criteria.

Improve rational use of medicines, led by the newly formed RDU Dept. at the JFDA. This could include consolidation and implementation of Standard Treatment Guidelines and work with physicians to improve prescribing behavior (e.g. through continuing medical education programmes)

Priorities set by Sub-Committee III Participants agreed on 3 main priorities: Engaging Civil Society Organizations (CSOs) to Form a CSO Alliance to work on Transparency and Access to Medicines Issues To build capacity within CSO Alliance to collect and analyze data on Drug Utilization, as a tool of quality control on availability, affordability, accessibility, registration, usage, waste… etc Strengthen Capacity of CSOs to Use Standard Tools and Process to Capture, Analyse and Share Data on Medicine Prices with the public

Participants agreed on 3 main priorities:

Engaging Civil Society Organizations (CSOs) to Form a CSO Alliance to work on Transparency and Access to Medicines Issues

To build capacity within CSO Alliance to collect and analyze data on Drug Utilization, as a tool of quality control on availability, affordability, accessibility, registration, usage, waste… etc

Strengthen Capacity of CSOs to Use Standard Tools and Process to Capture, Analyse and Share Data on Medicine Prices with the public

Work plan for engaging Civil Society – Priority I 1. Identify approximately 30 Civil Societies (including Patient Groups) and Build Related contact Data Base 2. Meet with identified CSOs to introduce MeTA and CSO Alliance to them and the multi-stakeholder approach and how CSOs can be involved in the policy planning and decision making processes. 3. Hold CSO Alliance Introductory and Launch Meetings and Advocacy Training Workshop for Able and Willing CSOs

1. Identify approximately 30 Civil Societies (including Patient Groups) and Build Related contact Data Base

2. Meet with identified CSOs to introduce MeTA and CSO Alliance to them and the multi-stakeholder approach and how CSOs can be involved in the policy planning and decision making processes.

3. Hold CSO Alliance Introductory and Launch Meetings and Advocacy Training Workshop for Able and Willing CSOs

Where are we now ? A nucleus for an actual alliance is in existence. Other patients’ groups/ civil societies have been contacted and expressed an interest in being part of the CSOs’ Alliance

A nucleus for an actual alliance is in existence.

Other patients’ groups/ civil societies have been contacted and expressed an interest in being part of the CSOs’ Alliance

CSO Currently Interested National Organizations : The National Center for Human Rights, The Royal Health Awareness Society Professional Associations : The Pharmacists Association, The Physicians Association Patients Groups / Societies : Multiple Sclerosis Society, Cerebral Palsy Foundation, Jordan Meningitis Foundation, Society for Care of Neurological Patients, Kidney Patients Friends Society, Jordan Rose of Hope Society for Arthritis Patients, The Jordanian Society for Care of Diabetes Patients, Jordanian Friends of Behcet's Disease Patients Society, Jordan Association for Thalassemia and Hemophilia, Liver Patients Friends Society, Cystic Fibrosis friends Society, White Beds Society, Jordan Cancer Society, Phenyl Ketone Urea Patients Society Consumer Societies : Consumer Protection Society of the Professional Associations, the Jordan Consumer Protection Society Other CSOs : Jordan Cultural Association for Development of Law and Legal Capacities, Jordan Swedish Medical Association, Armenian relief Society .

National Organizations : The National Center for Human Rights, The Royal Health Awareness Society

Professional Associations : The Pharmacists Association, The Physicians Association

Patients Groups / Societies : Multiple Sclerosis Society, Cerebral Palsy Foundation, Jordan Meningitis Foundation, Society for Care of Neurological Patients, Kidney Patients Friends Society, Jordan Rose of Hope Society for Arthritis Patients, The Jordanian Society for Care of Diabetes Patients, Jordanian Friends of Behcet's Disease Patients Society, Jordan Association for Thalassemia and Hemophilia, Liver Patients Friends Society, Cystic Fibrosis friends Society, White Beds Society, Jordan Cancer Society, Phenyl Ketone Urea Patients Society

Consumer Societies : Consumer Protection Society of the Professional Associations, the Jordan Consumer Protection Society

Other CSOs : Jordan Cultural Association for Development of Law and Legal Capacities, Jordan Swedish Medical Association, Armenian relief Society .

Vision of the role of the CSO Alliance To be active (as a lobby group) To be broad based To be represented in the decision-making process for the sake of the stakeholders, particularly patients and society at large

To be active (as a lobby group)

To be broad based

To be represented in the decision-making process for the sake of the stakeholders, particularly patients and society at large

Anticipated Barriers and Restrictions Existing Laws that prevent any role for civil society organizations in the decision-making process Current Draft Laws under discussion by Parliament

Existing Laws that prevent any role for civil society organizations in the decision-making process

Current Draft Laws under discussion by Parliament

Work plan for engaging Civil Society – Priority II Training and capacity Building on Drug utilization tools; Researching and documenting case studies on drug utilization, availability, affordability, accessibility, registration, usage, waste; Examining the transparency of the above; Dissemination of findings and negotiating around policy change to improve access to medicines.

Training and capacity Building on Drug utilization tools;

Researching and documenting case studies on drug utilization, availability, affordability, accessibility, registration, usage, waste;

Examining the transparency of the above;

Dissemination of findings and negotiating around policy change to improve access to medicines.

Work plan for engaging Civil Society – Priority II Strengthen capacity of CSOs to use standard tools and process to capture, analyse and share data ; Document Case Studies on Existing Marketing Practices Document Case Studies on Existing Advertising Practices CSO Alliance to discuss findings of above and collectively look at how to present the findings and decide what could be done and negotiate around policy change to improve access to medicines

Strengthen capacity of CSOs to use standard tools and process to capture, analyse and share data ;

Document Case Studies on Existing Marketing Practices

Document Case Studies on Existing Advertising Practices

CSO Alliance to discuss findings of above and collectively look at how to present the findings and decide what could be done and negotiate around policy change to improve access to medicines

Work plan for engaging Civil Society – Priority III Build a data base including comparative data on existent prices of medicines in Jordan between the private sector and public sector and on availability of generics and branded generics as well as Innovators (patented medicines). Monitor the above prices and use in lobbying for affordable medicines to increase access. Benefit from international MeTA / HAI expert on format and analysis. CSO Alliance to lobby for policy changes to improve access to medicines.

Build a data base including comparative data on existent prices of medicines in Jordan between the private sector and public sector and on availability of generics and branded generics as well as Innovators (patented medicines).

Monitor the above prices and use in lobbying for affordable medicines to increase access.

Benefit from international MeTA / HAI expert on format and analysis. CSO Alliance to lobby for policy changes to improve access to medicines.

Transparency and Communication Develop Website for the CSO Alliance. Independent dual language (Arabic and English) website aimed at general public. Publish/ Make Accessible all data and information relating to the CSO Alliance and its contribution to the MeTA Council in Jordan. Use all Media Channels to communicate information to all stakeholders. Develop long term engagement plan with the media as key stakeholders in the efforts to improve transparency.

Develop Website for the CSO Alliance. Independent dual language (Arabic and English) website aimed at general public.

Publish/ Make Accessible all data and information relating to the CSO Alliance and its contribution to the MeTA Council in Jordan.

Use all Media Channels to communicate information to all stakeholders.

Develop long term engagement plan with the media as key stakeholders in the efforts to improve transparency.