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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Year 10th, number 109 - December 2022



Register here! (registration is free but mandatory)

Active Citizenship Network (ACN), is glad to invite you to the next EU Webinar: “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences and perspectives from PAGs & relevant stakeholders” which will be held on the 31st January 2023 from 14:30 – 16:00 CET.
The initiative wishes to promote an EU policy dialogue on therapeutic adherence, with the aim to better contribute – starting from citizens’ and patients’ perspectives - to understanding the impact of the COVID-19 pandemic on the therapeutic plans for chronic patients, with the ultimate goal of enhancing the actions and reactions implemented by PAGs and relevant stakeholders in front of the community of experts and Institutions.
The starting point will be the main data collected thanks to the survey carried out by Active Citizenship Network with the direct involvement of 38 PAGs across Europe. The data and the recommendations collected show the inadequate attention of the institutions and the main stakeholders in relation to access and continuity of care for non-Covid-19 patients, as better explained in the introductory article Encouraging across Europe the civic & patient advocacy groups’ engagement in the implementation of National Resilience and Recovery Plans to reduce the burden of Covid-19 pandemic on NCDs patients’ therapeutic adherence”, drafted by Active Citizenship Network and published by the “International Journal of Epidemiology And Public Health Research” peer-reviewed journal.
The event is realized in the context of the homonymous multi-annual EU project “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences, and perspectives from PAGs & relevant stakeholders”, focused on socializing the common elements or specificities that the pandemic's impact has had on therapeutic adherence and supporting the unmet needs of chronic patients.
For more information, please write to Bianca Ferraiolo: b.ferraiolo@cittadinanzattiva.it

To know more:

- EU Project “Therapeutic adherence during the COVID-19 pandemic across Europe: impact, experiences and perspectives from PAGs & relevant stakeholders” (Edition 2021Edition 2022)

- The Engagement of Cittadinanzattiva-Active Citizenship Network on Therapeutic Adherence at the national & at the EU level


Italian MEP Castaldo joined the MEPs Interest Group "European Patients' Rights & Cross-Border Healthcare" and the Inter-institutional Group “SDGs for well-being and consumers’ protection”
Active Citizenship Network is glad to announce that the Italian MEP Fabio Massimo Castaldo has officially joined the other institutional supporters of the Interest Group on Patients’ Rights and Cross-Border Healthcare - promoted by Active Citizenship Network in 2015 and currently at its second turn (2019-2024) with its essential role in putting the patients’ perspective at the centre within the EU health policy agenda - and the Inter-institutional Group “SDGs for well-being and consumers’ protection”, launched in February 2021. Fabio Massimo Castaldo was first elected to the European Parliament in 2014, where he was subsequently appointed Vice-President in 2017, as the youngest Vice-President in the history of the European Parliament. During the current term, he was reconfirmed as Vice-President, becoming the first-ever Vice-President from the Non-Attached Members of the European Parliament, and he held the position until January 2022. Prior to being elected in the European Parliament, he served as a Parliamentary assistant at the Italian Senate (2013-2014). In the European Parliament, he is a member of Committee on Foreign Affairs, the Subcommittee on Security and Defence and the Delegation for relations with the Maghreb countries and the Arab Maghreb Union, including the EU-Morocco, EU-Tunisia and EU-Algeria Joint Parliamentary Committees, as well as the Delegation to the Euro-Latin American Parliamentary Assembly. MEP Castaldo holds a double degree in Italian and French law, and a master’s degree in law, from Tor Vergata University of Rome. He also holds a master’s degree in international and European law from Paris-Est University.

Patients' Rights

Urgent policy change needed to tackle antimicrobial resistance
Supported by Active Citizenship Network and endorsed the MEPs Interest Group on "European Patients' Rights & Cross-Border Healthcare", the European Parliamentary event titled “Driving Collaboration in the Fight against Antimicrobial Resistance: Going Further, Aiming Higher” was held at the EU Parliament in Brussels last 15 November 2022 with the aim to create awareness of the urgent need to leverage current EU policy developments in the fight against Antimicrobial Resistance (AMR). In particular, the EU Parliament event reinforced the call for policy change and implementation to urgently address one of the world’s leading health threats. To watch the MEP Patriciello video message, click here.

There is concrete progress and a momentum behind incentivizing antimicrobial innovations in EU. Messages were clear and aligned:

- AMR is urgent, #TimeToAction is critical;
- Antimicrobial business model is broken. Incentives, especially pull, are needed;
EU is committed to deliver pull. There is a momentum to formalise in new pharmaceutical legislation;
Industry is aligned to support/collaborate/play our part;
The involvement of civic society and patient advocacy groups is also crucial in the development and implementation of AMR National Plans.

For further information, please click here or write to Weber Shandwick team.

To know more:

- Download the booklet with the event’s background & speakers’ biographies
- Read the article published by Politico on December 1st, 2022 and titled "Urgent policy change needed to tackle antimicrobial resistance"
- Please find here the photo gallery on FB page
- Our policy on patient safety: focus on Healthcare-Associated Infections (HAIs) and Antimicrobial Resistance (AMR)
- WORLD JOURNAL OF CLINICAL & MEDICAL IMAGES (Published date: 10 September 2022): Civil Society Engagement in The Fight Against AMR: From the New National Plan in Italy to the AMR Patient Alliance at The European Level
- Download the document “Recommendations for an effective strategy against the antimicrobial resistance” drafted in Italy by the “AMR multidisciplinary Task Force” promoted by Farmindustria in which Cittadinanzattiva has been officially involved.

ACN joins the AMR Patient Group
In line with its long-lasting commitment on the topic, Active Citizenship Network has recently joined the AMR Patient Group. Led by Health First Europe, in which since many years the ACN Director is Member of the Executive Committee, the AMR Patient Group is open to working with patient groups across Europe to address the serious public health threat posed by Antimicrobial Resistance. To know more, click here.

First Global Health Civic Charter presented
After the pandemic, we should have understood that everyone's health is interconnected: this is the vision that inspired the Civic Charter on Global Health on which Cittadinanzattiva worked throughout 2022, to promote awareness among citizens and institutions and identify concrete actions to protect - as a fundamental human right - the global health.
Founded on three pillars (health, environment and social justice), the Charter proclaims 13 rights that, taken together, aim to guarantee every person in the interest of the individual and the community "global health”, understood as state of bio-psycho-social well-being interconnected with biological, economic, and social, political, cultural and environmental, and commercial determinants.
The First Civic Charter of Global Health – that also identified circa 60 concrete actions to implement to make concrete and enforceable the 13 rights - has been promoted by Cittadinanzattiva with the involvement of numerous civic actors and experts from different areas, and presented last 19 November in Italy in occasion of the Festival "Fa’ la cosa giusta - Do the right thing", realized in Bastia Umbra from 18 to 20 of November. Read more here.
The Civic Charter of Global Health is promoted by Cittadinanzattiva with the unconditional contribution of Janssen Italia and the support of an independent external Scientific Committee. To know more about the experts, click here. To know more about the project, click here.

To know more:

- Towards a Global Health Charter: health and well-being, environment, and social justice as the key themes
- To download the full document click here, for the leaflet click here (both in IT language)
- To read an introductory article written by the Deputy Secretary General of Cittadinanzattiva, click here (IT language).

Vaccination is not only important for children but also in a life-course perspective: new European Council Conclusions officially declared
More than 75 participants from 17 different EU and non-EU countries were connected in occasion of the EU Webinar: “Waiting for the next Council conclusions: focus on adult vaccination”, organized by Active Citizenship Network (ACN) last 6th of December 2022. Our multi-stakeholder online event, hosted by the
MEPs Interest Group "European Patients' Rights & CrossBorder Healthcare, was the first EU policy dialogue initiative to discuss the Council Conclusion officially adopted under the Czech Presidency of the European Council by Health Ministers at the EPSCO Council on 9 December.
The Expert Meeting on Vaccinations -
opened also to PAGs representatives and held in Prague on 21 and 22 November - was an excellent opportunity to ensure that vaccines are seen as a lifelong saving rather than a cost.
There is a clear need to consider lifelong vaccination in these policy discussions and we appealed to EU Institutions, during the year, to support the need to also prioritise adult vaccination to help ensure the protection of the most vulnerable and reduce the burden on healthcare systems. The ACN’event allowed to discuss how we can activate in a synergistic way to support the European institutions' commitment to the vaccination policy across Europe.
Please find the event’s agenda and recording

For more information, please write to Daniela Quaggia: d.quaggia@activecitizenship.net

To know more:

- Rationale of the initiative
- VaccinAction 2022 EU project
- The Engagement of Cittadinanzattiva in vaccination

To read the article “EU health ministers aim to improve vaccination at all ages” just published by our media partner VaccinesToday, click here

ACN formally invited to join the Adult Immunization Board as Independent Advisor
The low adult vaccination coverage in Europe and the barriers experienced during the implementation of the COVID-19 vaccination strategies in almost all European countries underline the need for a thorough reflection on adult immunization programs in Europe. Therefore, the team of Prof. Paolo Bonanni – Department of Health Sciences, University of Florence, Florence (Italy) and Prof. Pierre Van Damme, Centre for the Evaluation of Vaccination, Vaccine and Infectious Disease Institute, University of Antwerp (Belgium) joined forces to create an “Adult immunization board (AIB)” based on years of experience with the Viral Hepatitis Prevention Board (VHPB, created in 1992) and the HPV Prevention And Control board (HPV Board, created in 2015). In this contest, Active Citizenship Network has become an independent advisor to the Adult Immunization Board (AIB). The AIB is an independent, international, multidisciplinary group of experts created to provide evidence-based reflection and guidance on strategic, technical, and policy aspects that will occur as we implement adult vaccination programs in Europe. During the Kick-off meeting organized last 8 November 2022 in Antwerp it was established the basic structure and functions of the Board and to plan the agendas of future meetings. The meeting was a unique gathering of international experts on adult vaccination in Europe. To know more, click here.

2022: State of Vaccine Confidence in the EU
Vaccine confidence among the public and healthcare professionals is high across most populations, with some exceptions and caveats. Between 2018 and 2020, there was a large increase in public perception towards vaccines across the EU, particularly towards the seasonal influenza vaccine. Many of these 2020 gains have since been reversed. Perceptions towards the importance, safety, and effectiveness of vaccines have declined across the EU between 2020 and 2022. Across the EU, the view that vaccines are safe remains higher than 2018 levels. Yet, EU-wide changes in public perceptions towards the importance and safety of vaccines shows that strong vaccine-dependence and variability in vaccine confidence exist between countries and within sociodemographic characteristics. To know more and download the factsheets by country, click here.

#UnitedInProtection - Get vaccinated: make vaccines work
As part of the initiative to counter vaccine misinformation in the program's
"EU4Health program 2021-2027 - a vision for a healthier European Union", the European Commission has launched a communication campaign on the benefits of vaccination against COVID, seasonal influenza, and HPV across the lifespan, called #UnitedInProtection. For more information, see the 
fact sheet.
To know more and download all the communication materials, click here.

Vaccines Europe Pipeline Review 2022
Vaccines Europe published its first-ever Vaccines Europe Pipeline Review 2022 of its 15 member companies, with 100 vaccine candidates as of July 2022. The review shows a promising pipeline aimed at tackling the challenges of today and tomorrow, such as the burden of respiratory tract infections, AMR, the aging of the population, climate change, and zoonotic infections, through leveraging a broad array of new technology platforms. This pipeline is a profound testimony of the commitment of the vaccine industry to ensuring we all benefit from the significant value of vaccination to our society. To download the document, click here.

Prioritising Adult Immunisation Policy in Europe
The paper on Prioritising Adult Immunisation Policy, published by Vaccines Europe on 6th December 2022 will be instrumental in striving the discussion at the EU and national levels on the value of adult immunisation and will support our advocacy towards creating a supportive environment for adult immunisation programmes. To achieve this Vaccines Europe calls for 4 different actions to protect adults against Vaccine-preventable diseases (VPD)s:

- Protect adults against VPDs through policies that prioritise and embed adult vaccination in national immunisation plans and ensure sufficient funding to improve access and uptake of existing vaccines and faster inclusion of new vaccines;
- Increase awareness and education of citizens and healthcare professionals (HCPs) on the overall burden of VPDs and the benefits of adult immunisation;
- Improve access and convenience to vaccination for adults;
- Establish digital vaccination registries to improve vaccination coverage rates (across the lifespan) and enable recalls and reminders.

To download the document, click here.

ACN officially recognized as stakeholder of the European Medicine Agency (EMA)
At the beginning of November 2022, Active Citizenship Network was selected as a member of the EMA stakeholder database. In particular, this achievement was one of the main outputs of our 2022 EU commitment on advanced therapies.
The European Medicines Agency (EMA) collaborates with many patients, consumers, and their organizations on aspects such as information on medicines, consultation on product-specific issues, and participation in workshops and meetings.
These patient and consumer experts provide the Agency with the up-to-date, real-life experience of living with a disease or the use of medicines.
Identifying the right person for each of the activities requires the use of a database; therefore, EMA is expanding its internal database of stakeholders, which currently contains information on organizations, to also include individuals and their areas of interest across Agency activities. To know more, click here.

Improving health literacy for better public and patient involvement in COVID-19 pandemic mitigation
In coherence with our commitment in the fight against Covid-19, Active Citizenship Network (ACN) is glad to announce a new EU project on the topic, focused on the value of the health literacy: this is because we believe that an informed citizen and patient can really make a difference.
Active Citizenship Network is involved in a consortium led by our international partners
IAPO and IAPO PSP Observatory. National partners are Alcer from Spain and Studiorum, from Macedonia. Along 2023, Active Citizenship Network will be involved in the following activities: new practical tools and materials to understand the prevention of transmission, the importance of testing, and appropriate treatment; the adaptation of existing courses for health professionals to the audience of patients and caregivers and the general public; interactive training sessions; communication campaign.

To know more:

- Description of the EU Project “Improving health literacy for better public and patient involvement in COVID-19 pandemic mitigation
- The fight against the Covid-19 pandemic & towards more resilient Health Care Systems at the national & at the EU level

PROPHET project represented at the 1st International Experts Forum & Policy Dialogue Workshop
Last December 2nd, 2022, the Health Innovation Thematic Group organized its 1st International Experts Forum & Policy Dialogue Workshop online called “Personalised medicine approaches to Active and Healthy Living and Ageing”. “From care to prevention, to happy living” has been the topic around which experts from all over the world has exchanged views, experiences and have debated to trace the trends in R&I, providing policymakers with evidence. On that occasion, the new H2020 “PROPHET” EU project in which is involved also Cittadinanzattiva/Active Citizenship Network, has been presented thanks the participation of the Prof. Stefania Boccia, PROPHET project coordinator. For further information click here.

The People's Declaration for Traditional, Complementary and Integrative Healthcare
The People's Declaration calls for the respectful collaboration between traditional, complementary, and biomedical practices to achieve a person-centred and holistic approach to health. It fights for healthcare on the whole person, that is participative, respects individual choices and cultural diversity and integrates clinical experience and patient values with the best available research information. After the Declaration has gained broad support, it will be a valuable tool to ask the WHO for a WHA resolution on Traditional, Complementary and Integrative Healthcare in 2023, to be implemented in the upcoming WHO Traditional Medicine Strategy. To know more about the Declaration, click here.

Media partnerships with “Policy & Procurement in HealthCare”
Active Citizenship Network has recently formalized a new media partnership with the Italian magazine Policy & Procurement in HealthCare” (PPHC). Published by SEEd Medical Publishers, it deals with healthcare policies with a particular focus on issues related to procurement in public healthcare, innovation, and organization. The aim of the magazine is to offer a space for discussion aimed at all the actors involved in the processes concerning health policies in Italy, not only the Regions and payors but also health supervisors, hospital pharmacists, contracting stations, general and health management, districts, clinicians, PAGs. To know more about the new media partner, click here (IT language).

Consumers' Rights

We want you: take part in the BlueBioChain survey!
As part of project BlueBioChain, we report a survey aimed at consumers but also academics and people from bio-based industries, the food industry, experts at cosmeceuticals and aquaculture, and it’s on wastewater/side stream water valorisation. The survey is anonymous, and your privacy is guaranteed. The survey lasts about 12 minutes and Active Citizenship Network is glad to support its dissemination.
The survey was carried out within the framework of BlueBioChain an ERA-NET project, co-funded by the European Commission and national funds, which aims to implement a holistic biorefinery platform along with emerging technologies to exploit the potential of microalgae for wastewater valorisation and production of high-market value bio-based products. The project presents a zero-waste aquaculture farm, produces cosmeceuticals (skin cream), natural/bio-food additives, and aquafeed from microalgae, which in its turn has been cultivated in industrial wastewater/side stream product, delivers a sustainable and energy-efficient biorefinery process and develops a plug-and-play circular bioeconomy concept which closes loops of carbon, nutrients, and water. To participate click here.

National consumer associations and leading social forces in Italy call for the inclusion of 5 critical points in the Government’s agenda
The National Assembly of Consumer Associations held on October 18th urged the Government to take adequate measures to cope with price increases in energy and consumer goods. It was an unprecedented meeting, which saw, alongside consumers, the participation of the most important trade unions and relevant unions of the productive sector, voluntary organizations, environmental and pro-renewable associations and representatives of photovoltaic manufacturers and energy retailers. The broad participation has led to prepare a shared platform starting from five main demands on energy: the suspension of secondments due to arrears, the increase in bonuses for energy, gas, and water, the reforming of the bill, an industrial and energy policy to boost investment in renewable sources and storage technologies and finally an extraordinary national support plan for families and businesses. To know more click here (ENIT languages).

Italy: Energy communities and purchasing groups, what they are and how they work
Cittadinanzattiva's guide on “Energy communities and purchasing groups: How to make citizens protagonists in the energy market” aims to be a practical support for citizens who wants to know and undertake a path of change towards an alternative and more active approach to the world of energy. The guide explains what energy communities and purchasing groups are and provides a comprehensive glossary on the energy market to clarify concepts such as enhanced protection market, free market, hourly zone price and smart homes. To download the guide, read more and click here (IT).


19 January 2023 | Rome: “Health needs in inner areas, between medical desertification and NRRP” Register here! (registration is free but mandatory)
Cittadinanzattiva, through its EU branch Active Citizenship Network (ACN), is glad to invite you to the national event “Health needs in inner areas, between medical desertification and NRRP”, which will be held in Rome at the European Commission Representation in Italy - via Quattro Novembre 149 - on January 19th, 2023 from 10:00 to 13:00 CET. The initiative is part of the EU project “Action for Health and Equity: Addressing medical Deserts” (AHEAD), which aims to reduce health inequalities by addressing the challenge of medical deserts and medical desertification in Europe. “A medical desert is the end point of a complex process called ‘medical desertification’, that implies continuous and increasing inability of a given population to access health services in a timely and contextually relevant manner” as defined through the AHEAD project activities.
The event intends to investigate the health needs in the inner areas of the country starting from the limited access to care, which is also caused by medical desertification, and how the resources provided by the National Recovery and Resilience Plan can represent an encouraging response to the needs of local communities. It will start from the instances collected in the two Italian territories in which the AHEAD project has conducted pilot initiatives: Campania and Sicily, to broaden the discussion to a national level. The event will be held exclusively in Italian.
For further information: b.ferraiolo@cittadinanzattiva.it

27 January 2023 4-5 pm CEST | “Let’s FACILITATE”! The access to Clinical Trial Data and their reuse. Register here! (registration is free but mandatory)
The current fragmentation of clinical data in separate repositories makes the return and reuse of clinical trial data particularly complex and challenging. The Project FACILITATE, in which ACN is partner, aims to develop an innovative process for the return and reuse of data within an ethical legal framework compliant with the General Data Protection Regulation (GDPR) to

- enable access and portability of patient data
- strengthen the role of patients in clinical trial strategy and design
- put patients at the center of the drug development process.

The project brings together stakeholders at all levels in the decision-making chain, including patients, healthcare professionals, software developers, pharma representatives, clinical trial repositories processors and controllers, ethicists, lawyers, and other active regulators
To better understand FACILITATE’s innovative approach to returning data to trial participants, click here.



Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Bianca Ferraiolo, Maddalena D'Urso, Ginevra Varallo
Coordination and Production: Giacomo D'Orazio 

To contribute, plase write to: mail@activecitizenship.net

Active Citizenship Network c.o. Cittadinanzattiva - Via Imera 2 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
Representative office to the UE: Rue Philippe Le Bon, 46 - 1000 Brussels (Belgium)
Mail: brussels@activecitizenship.net