Active Citizenship Network celebrated the 11th European Patients’ Rights Day with a multi-stakeholder conference, held on the 10 May 2017 in Brussels.
The aim of the convention was to discuss, inform and suggest new approaches to the existing European and national medicines regulatory systems, for better management of access to innovation. Indeed, the access to innovative therapies strongly contributes to define the quality of life of patients and the quality of healthcare services provided, respecting the fundamental values recognised by the European Charter of Patients’ Rights. The event was an occasion to inform, discuss and take commitments to improve the respect of patients’ rights and their involvement in the policy-making and regulatory processes at national and European level.
The Council conclusions on Innovation for the benefit of patients during the European semester of the Italian Presidency (December 2014) recognised that “innovations in healthcare can contribute to health and well-being of citizens and patients through access to innovative products, services and treatments that have added value with regard to the existing ones and can also lead to more effective ways to organise, manage and monitor work within the health sector as well as to improve the working conditions for healthcare staff”.
Nevertheless, for example, in many European countries patients still have to wait a long period of time before the medicines – although already approved by the European Commission on the basis of the EMA/CHMP positive feedback – are available.
The European legislation has provided many tools to facilitate the early availability of therapies. However, in many cases long national procedures for reimbursement can delay this availability. Unacceptable disparities in patients’ access – due to different pricing models, authorisation times, information accessibility, channels and criteria of distribution, etc. – in particular to innovative medicines, persist, and they have been made even worse by the adoption of austerity measures and by the reduction of healthcare spending in many Member States since 2009.
European and national regulatory authorities and institutions, patient Organisations and companies should work together to overcome the increasing number of barriers and inequalities.
In this context, the first steps should concern a clear and shared definition of innovation, but also current procedures – and their transparency – for authorisation, pricing and reimbursement, and bridging the gap caused by the lack both of information and of patient involvement in these processes.
Indeed, despite their differences, each National Health System of the EU Member States should guarantee the same rights to patients and people in general.
- Topics treated
The actual regulatory system model in Europe and the point of view of civic/patient associations
- how to assure an equitable, timely and suitable access to innovation?
National experiences of management of innovation
- from Marketing Authorization to concrete access for patients: successes and failures of medicinal products in different EU countries (e.g. Hepatitis C - Cancer) and other experiences (social insurance).
The involvement of patient organisations in the regulatory process
- sharing good examples of involvement of patient organizations in the national medicines agencies processes.
- The speakers’ biographies
- The final remarks
- The survey about the involvement of patients’ associations in the decision making process within the national medicine agencies
- Photos of the event
- The press release
- Some examples of the hundred initiatives all around Europe for the European Patients’Rights Day 2017
- Informative campaign on IT Law 38/2010: “WERE NOT BORN TO SUFFER”
- The active role of citizens in the evaluation process: methods, impact and prospects of Civic Evaluation in Italy
- European Civic Prize on Chronic Pain Collecting Good Practices - III edition 2020-2021
- European Pillar of Social Rights & the commitment of Cittadinanzattiva
- Joined For Vaccination: speakers list
- European Pillar of Social Rights & chronic pain
- Joined For Vaccination: addressing Vaccine Hesitancy and Increasing Uptake in EU. A Multi-Stakeholder Perspective
- European Pillar of Social Rights & COVID-19 emergency
- Pain Euro-Mediterranean Coalition (PEMeC) Aliança Euro-Mediterrânica da Dor
- European Pillar of Social Rights & childcare and support for minors
- National consultations: European active citizens for vaccination - 2019
- The role of the European Pillar of Social Rights ambassadors
- The involvement of Active Citizenship Network in SIP
- THE ENGAGEMENT OF CITTADINANZATTIVA IN THE FIGHT AGAINST THE COVID-19 PANDEMIC
- The involvement of Active Citizenship Network in SIP SYMPOSIUM 2019
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