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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 10th, number 108 - November 2022
Highlight

JOIN OUR EVENT ON ADULT VACCINATION AT THE EU PARLIAMENT!

Registration link (registration is free but mandatory)

Active Citizenship Network (ACN), is glad to invite you to the next EU Webinar: “Waiting for the next Council conclusions: focus on adult vaccination” on the 6th December 2022 from 14:30 – 16:00 CET.
EU health Ministers will meet later this year, under the Czech Presidency of the European Council, to discuss the European institutions' commitment to the vaccination policy. The Expert Meeting on Vaccinations, which will be held in Prague on 21 and 22 November, is 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 to support the need to prioritise adult vaccination to help ensure the protection of the most vulnerable and reduce the burden on healthcare systems. Our multi-stakeholder online event, hosted by the MEPs Interest Group "European Patients' Rights & CrossBorder Healthcare, is intended to be a moment of reflection to observe and discuss the outcome of the situation, also on the basis of the documents that will come out of the expert meeting on 21-22.
The event is realized in the framework of the VaccinAction2022  EU project, focused on supporting the need for strengthening adult vaccination in Europe.
For more information, please write to Daniela Quaggia: d.quaggia@activecitizenship.net
To know more:

- VaccinAction 2022 EU project
- See here the Active Citizenship Network EU communication campaign on Adult Vaccination realized for #VaccinAction 2022
- VaccinAction 2021 EU project
- The Engagement of Cittadinanzattiva in vaccination

Focus

JOIN THE ANTIMICROBIAL RESISTANCE EVENT AT THE EU PARLIAMENT!

Registration link

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” aims to create awareness of the urgent need to leverage current EU policy developments in the fight against Antimicrobial Resistance (AMR). The hybrid event, organized by Weber Shandwick, is scheduled at the EU Parliament in Bruxelles next 15 November, 11am-12.30pm CET.

Resistance against antimicrobial treatments including antibiotics places a considerable burden on healthcare systems, society and animal health. According to a WHO Technical Report in 2019 AMR directly caused nearly 1.3 million deaths and was associated with almost 5 million deaths. The European Health Union indicated antimicrobial resistance (AMR) as one of its top three priority health threats in the EU. Within the context of the Revision of the Pharma Legislation and the planned Council Recommendations on AMR, the objective of the event is to bring high-level European policy-makers to discuss the innovation framework for the development of new antibiotics based on concrete examples of initiatives conducted by national health authorities to fight against AMR. The event will also explore collaborative and governance models to achieve better implementation of actions and best practices for a holistic AMR approach.

For more information, please write to Weber Shandwick team.

To know more:

- 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

SPECIAL SESSION ON "Policy dialogue with Institutions at the EU Parliament on equitable patient access to advanced therapies across Europe"

All potential eligible patients have the right to access Advanced Therapies Medical Products (ATMPs). National health budget constrains cannot be a barrier for patients to have access to ATMPs. Nowadays traditional reimbursement and budgeting schemes are unable to amortize the value of the ATMPs, whose costs and benefits are not aligned. These types of therapies need new and different payment and accounting methods, which take into account the high initial costs and the large and lasting benefits over time, both for the patients and for the national health systems. It is time for an institutional mindset change to classify ATMPs expenditure as an investment and not a cost, possible if it is decided to review - from Eurostat downwards - the economic/financial classifications of healthcare expenditure currently in force. Endorsed by 43 Patients' Advocacy Groups (PAGs), this was - in synthesis - the key message sent last 24 of October thanks ACN event to the European and Member States Institutions in order to leverage the potential of the advanced therapies for a large number of European citizens in compliance with the budget limits in which healthcare has been paying almost all of Europe for some time.
Kindly hosted by the Member of the European Parliament Tomislav Sokol and supported by the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”, the initiative has been promoted under the patronage of the Czech Presidency of the Council of the EU and realized with the unconditional support of #VITA – Value and Innovation for Advanced Therapies coalition (it includes: Bristol Myers Squibb, Gilead Sciences, Janssen, Pfizer, PTC Therapeutics, Roche, and Vertex), which is coordinated by LS Cube Global Law Firm.
For more information, please write to Maddalena D'Urso: m.durso@activecitizenship.net
To know more:

- Please find the event’s program and read the bio of the panellists
- Please find here the recording link , and read the summary
- Please find the Call to Action "Advanced Therapies Medicinal Products revolution & the respect of the patients’ right to access to care"
- Press release(EN - IN)
- See the photo gallery on FB page.

image005Giorgio Alleva is Full professor of Statistics at the Faculty of Economics at Sapienza University of Rome and Director of the Department of Methods and Models for Economics, Territory, and Finance.  Former president ISTAT (Italian National Institute of Statistics). Member of the independent #VITA Expert Group

image005Sarah Garner, PhD, BPharm, is currently the Senior Policy Advisor, Access to Medicines and Health Products, WHO Regional Office for Europe.

image005Jasna Karacic is the President at Croatian association for the promotion of patient's rights; Head of Health Diplomacy Unit - International Council of The Patient Ombudsman; Health attaché during the Croatian Presidency of the Council of the European Union

image005Paschalia Koufokotsiou is a Policy officer at the European Commission, DG SANTE - Unit D1: medical products, quality, safety, innovation.

image005Mauro Marè is Full Professor of Public Economics at Viterbo’s Tuscia Univerity and Full Professor of Public Economics at Rome’s LUISS University. Member of the independent #VITA Expert Group.

image005Tomislav Sokol is MEP in the European Parliament for the Group of the European People's Party (Christian Democrats), co-chair of the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare” and member of the TRANSFORM MEP Interest Group.

image005Mariano Votta is responsible for EU Affairs of the Italian NGO Cittadinanzattiva and the Director of its EU branch called “Active Citizenship Network” (ACN).

image005Mariam Zaidi - EURACTIV Journalist - is an international news presenter, reporter and expert on the EU.

To know more:

- Rationale of the initiative
- An overall overview about ATMPs
- Technical Policy Report from the #VITA Working Group “The economic evaluation of advanced therapy medicinal products: characteristics and reasons for a new economic and accounting approach” (EN – IT)
- The EU training seminar ATMPs revolution: empowering leaders of EU civic and patients’ advocacy

Press review

NCN Bio (27 October 2022): Accesso alle terapie avanzate: rimuovere le barriere normative (IT)
PHARMA BUSINESS (26 October 2022): Proposta la riclassificazione della spesa per le terapie avanzate come spesa di investimento (IT)
IL SOLE 24 ORE (25 October 2022): Terapie avanzate trattate come un investimento (IT)
ABOUTPHARMA (24 October 2022): Spesa per terapie avanzate riclassificata come investimento: la proposta all’Europa di esperti e associazioni di pazienti (IT)
SANITÀ24 (24 October 2022): Riclassificare la spesa sanitaria per le terapie avanzate come investimento: la proposta al Parlamento Ue di esperti italiani e 43 associazioni di pazienti (IT)
QUOTIDIANO SANITÀ (24 October 2022): Riclassificare la spesa sanitaria per le terapie avanzate come spesa di investimento”. La proposta presentata al Parlamento Ue da un gruppo di esperti e da 43 Associazioni di pazienti (IT)
REDATTORE SOCIALE (24 October 2022): Salute, proposta al Parlamento Ue: riclassificare la spesa per le terapie avanzate come spesa di investimento (IT)
HELPCONSUMATORI (24 October 2022): Terapie avanzate, la proposta: riclassificare la spesa sanitaria come spesa di investimento (IT)
IL FARMACISTA ONLINE (24 October 2022): Riclassificare la spesa sanitaria per le terapie avanzate come spesa di investimento". La proposta presentata al Parlamento Ue da un gruppo di esperti e da 43 Associazioni di pazienti (IT)
HEALTH DESK (24 October 2022): Smettiamo di chiamarla spesa. La proposta di riclassificare come investimento la spesa per le terapie avanzate (IT)
HEALTH EUROPA (21 October 2022): Equitable patient access to advanced therapies
HEALTH FIRST, EUROPE (7 October 2022): 24 October – Securing Equitable Patient Access to Advanced Therapies across Europe

News
Patients' Rights

Health for the Youngs”: started the second edition
Cittadinanzattiva's project, “Health for the Youngs”, came to its second edition and aimed to involve high school students in an educational path dedicated to prevention, antimicrobial resistance and vaccines. It provides students with the tools and necessary information to adopt correct hygiene and prevention behaviours to limit the spread of infectious diseases. “Health for the Youngs” transfers power on a fundamental issue such as health and well-being and awareness to younger generations. And it did so within the Italian public school system that has shown to be one of the privileged places in which propose and develop new approaches capable of impacting health education for young people, making them protagonists. To learn more about the project, click here(IT).

Consumers' Rights

European Mobility week & Cittadinanzattiva’s commitment at the national level
In coherence with its multi annual commitment on the topic of sustainable mobility and as associated partner, for the 2022 European Mobility Week Cittadinanzattiva launched in Italy an online guide and a telephone number available to citizens and appealed to institutions and companies to promote a new urban mobility culture. The guide includes information on how the public transport service is provided, practical information on the various benefits of the so-called shared mobility, what the Sustainable Urban Mobility Plan (SUMP) provides, and advice for ecological driving. For citizens wishing to report disservices regarding public transport, Cittadinanzattiva provided a national telephone desk active on Mondays, Wednesdays and Fridays. To know more & download the guide, click here (IT).

Civic Activism

Winter is Coming & Medal of merit
With the escalation of the hostilities and the destruction of most of the infrastructure in the Eastern and Southern regions of Ukraine, millions of civilians are bracing ahead of the cold months to come.
Orphans Feeding Foundation, partner of Active Citizenship Network, has now launched "Winter is Coming" campaign, which aims to provide the necessary support to millions of civilians in the coming cold months to come. Click here to learn more and help people in need in the liberated areas in Ukraine. Recently, The Ukrainian parliament has awarded Mariam Lambert, the co-founder of Orphans Feeding Foundation, a medal of merit for services to Ukraine.

Participation of Children and Teenagers in Public Safety & Cittadinanzattiva’s contribution
EENA, Cittadinanzattiva's partner on the European project ENGAGE, analyses what else can be done to involve children more actively in public safety and, in doing so, cites Cittadinanzattiva's initiative for the "19th National Day of Safety in Schools" that sheds light on how the pandemic changed schools. On this occasion, Cittadinanzattiva created a safety smartbox (IT) with valuable materials to promote resilience in the face of disasters in schools. To download the EENA report, click here, to know more about Cittadinanzattiva's contribution, click here.

Events

8 November 2022 | Antwerp (Belgium): Adult Immunization Board (AIB) Kick-off meeting
Invited by the team of Prof. Paolo Bonanni (University of Florence) and Prof. Pierre Van Damme (University of Antwerp), the Director of Active Citizenship Network Mariano Votta will join the Adult Immunization Board (AIB) which its first meeting is planned in Antwerp. The purpose of the AIB is to contribute to the reduction of vaccine-preventable disease in European adults by providing evidence-based guidance on key technical and strategic issues, and by monitoring the progress of adult immunization programs at European, country, and regional levels. The AIB Advisory Board is composed of a multidisciplinary and international group of core experts in adult immunization who set the strategy and define the actions of the Board. The Board will offer a network for the dissemination of scientific information related to adult vaccination, focussing on Europe. To know more, please contact the Adult Immunization Board Secretariat based in the University of Antwerp, Faculty of Medicine and Health Sciences - Vaccine & Infectious Disease Institute.


8-10 November 2022 | Berlin: AMR Patient Summit
As member of the “AMR Patient Alliance Advisory Group”, Active Citizenship Network will join, which is Director, to the annual “AMR Patient Alliance”, leading the training session “Advocating with Policymakers and Other Stakeholders” to a broader constituency to PAGs across the world. To know more about Cittadinanzattiva/Active Citizenship Network policy on patient safety, with a focus on Healthcare-Associated Infections (HAIs) and Antimicrobial Resistance (AMR), click here.

10 November 2022 | European PDHA 2022 Awards Ceremony
The European Patient Digital Health Awards strive to showcase digital health solutions developed with patients - for patients. The judging panel members, in which is included also the ACN Director, evaluated projects from 16 European countries. Find out here who they are! The winners will be announced during the virtual European PDHA 2022 Award Ceremony on 10 November 2022! To know more, click here.


17 November 2022 | Protecting the most vulnerable and reducing the socioeconomic impacts of COVID-19.
Active Citizenship Network Director will be one of the speakers in the EU webinar hosted by the Financial Times in partnership with Pfizer. Scheduled next 17 Nov from 16.00 to 16.50 CET, the webinar will explore strategies for living with COVID-19 that will ensure those at highest risk for serious illness are not left behind. The discussion will focus on how the ecosystem of stakeholders such as governments, health authorities, and pharmaceutical companies can better work together to prepare for surges and help protect the most vulnerable. To register, click here.

23 November 2022 | IDEAHL workshop on inclusion, gender and ethics & privacy framework
The IDEAHL (Improving Digital Empowerment for Active Healthy Living) consortium is organizing a workshop on inclusion, gender and ethics & privacy framework for digital health literacy next 23 of November from 10-12pm CET. The ultimate purpose of the project will be to empower EU citizens in using digital tools to have a more active role in the management of their own health and well-being, as well as supporting social innovations for person-centred care models. Active Citizenship Network has been invited to participate and its Director Mariano Votta has been involved in the Advisory Board of the IDEAHL H2020 project. To know more, click here.

24 November 2022 | Dublin: 14th Citizens' Energy Forum
This year, the Forum will be entirely dedicated to citizens and how they are prepared for winter and what they can still do to control their energy bills and engage in green energy Please save the date for this event in your agendas.
Cittadinanzattiva-Active Citizenship network has been invited to attend the initiative by the DG Energy, in coherence with its long term commitment on energy issues and its participation on the EU project “NUDGE”To know more, click here.

28 November 2022 | Brussels: HERA Civil Society Forum meeting
Since 2022, Cittadinanzattiva/Active Citizenship Network was officially appointed by the EU Commission as a member of the HERA Civil Society Forum, the expert group of the HERA Advisory Forum, led by the European Health Emergency preparedness and Response Authority (HERA). The second meeting of the HERA Civil Society Forum which will take place at the Albert Borchette Conference Center, Rue Froissart 36, Brussels, on the 28 November 2022 in the afternoon. A hybrid connection option is available for the member cannot join in person. To know more, click
here.

29 November 2022 | Pain in the International Classification of Diseases
The Societal Impact of Pain (SIP) is currently focusing on ICD-11 (International Classification of diseases), and as part of its activities in 2022, it’s revisiting the SIP Road Map Monitor. The results from the SIP Road Map Monitor 2022 will officially be launched at this event. To register, click here.

1-3 December 2022 | Amsterdam: 7th Life Course Summit & 14th Excellence in Pediatric Conference
Active Citizenship network has been invited to speak in the session dedicated to Promoting Life Course Vaccination Strategies as the Basis of Health Systems Resilience Across Europe. It is one of the 5 Vaccine Working Groups taking place on Thursday 1st and Friday 2nd December in Amsterdam and online, in the framework of the Excellence in Pediatrics Annual conference.

Read more:

EiP Conference - 14th Edition - Amsterdam and Online 1-3 December 2022
7th Life Course Immunisation Summit - Amsterdam and Online 1-2 December 2022 - Working Group pages with the past meeting reports and discussion points are available here.

8 December 2022 | Brussels: One Year of HERA Conference
Active Citizenship Network has been officially invited to participate to the “One Year of HERA” Conference, taking place in person in Brussels on 8 December 2022. The Conference is the first occasion to gather actors from the institutional EU governance networks and also from industry, research, academia, civil society, national/local/regional authorities, key international organisations, partner countries as well as many other stakeholders to discuss on innovative medical solutions to address cross-border health threats, resilient supply of medical countermeasures and international collaborations in preparedness and response to cross-border health. To know more, 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
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Active Citizenship Network c.o. Cittadinanzattiva - Via Imera 2 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
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Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net