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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 8th, number 86 - December 2020

SPECIAL EDITION ON THE EUROPEAN CELEBRATION OF THE EUROPEAN PATIENTSí RIGHTS DAY 2020

Highlight

Fighting the AMR paradoxes in the age of COVID-19
Antimicrobial resistance (AMR) is one of the ten most urgent threats facing global health, and yet it remains totally underestimated by much of the population. AMR is more dangerous than car accidents and even cancer, but is still not being prioritised at either the EU or Member State levels within public health policies. Furthermore, AMR is interlinked with the COVID-19 pandemic, a fact which has been all-but ignored by the media. In the article published by Health Europa, Mariano Votta, ACN Director and Neda Milevska-Kostova, IAPO Vice Chair,  discuss the threat of antimicrobial resistance in the context of COVID-19 and the recent European Patients’ Rights Day, explaining that a One Health approach is being planned and that multi-stakeholder actions are required. Read more

Focus

The XIV European Patients’ Rights Day has been celebrated by Active Citizenship Network with a virtual multi-stakeholder conference focused on the fight to antimicrobial resistance (AMR) and the importance of the citizens’ engagement for a multi stakeholder action, presenting experiences coming from different countries and involving patient and civic associations, EU Institutions and experts, health professionals, public and private bodies.
The Conference was kindly hosted by MEP Brando Benifei from S&D group. Read more

Click here to read the Conference’s programme
Click here to read the speakers’ biographies
Click here to see the video-recordings of the first and second day of the Conference
Click here to read the press release, and here for the press review 
Click here to see the photos of the event
Click here to read our policy on patient safety: focus on Healthcare-Associated Infections (HAIs) and Antimicrobial Resistance (AMR)
Click here to read the letter that MEP Tiemo Wölken sent us just after the Conference

Speakersí list

image005Laura Alonso Irujo
Laura Alonso Irujo has a degree in audiovisual communication and specialized studies in the non-profit and voluntary sector management. She has worked over 20 years as project manager and communications specialist with a special focus on health communication, behavior change communication, social welfare advocacy, visibility plans design and audiovisual production. She has working experience in UNICEF, other United Nations Agencies and several EU funded projects.

image005Bruce Altevogt
Bruce Altevogt is Vice President and Head External Medical Engagement within Pfizer Inc.'s Hospital Business Unit. In this role Dr. Altevogt is responsible for the business unit’s patient engagement strategy and oversees Pfizer’s industry leading AMR surveillance program, ATLAS. Prior to this role he was a Senior Director of Science Policy, where he was responsible for managing policy issues in support of Pfizer’s research & development enterprise, vaccines and was lead for AMR policy.

image005Luca Arnoldo
Graduated in Medicine and Surgery in 2008 and specialised in 2014 in Hygiene and Preventive Medicine at the University of Udine. Since 2015 he has been working at the “Azienda Sanitaria Universitaria Friuli Centrale”. He collaborates in the coordination of the "Safe Cure Network" which is the structure that coordinates clinical risk management and patient safety regional programmes of Friuli Venezia Giulia, including those concerning prevention and control of healthcare-associated infections and antimicrobial stewardship.

image005MEP Brando Benifei
Brando Benifei, European Federalist, is from La Spezia, Italy, and is the Head of Delegation of the Italian S&D MEPs. His main areas of work are Internal Market and Consumers Protection, Employment and Social Affairs, and Constitutional Affairs. He is rapporteur for the Single Market Program and shadow rapporteur for the European Social Fund Plus. He is active on youth policies, digitalisation and rights of persons with disabilities.

image005Peter Beyer
Peter Beyer, a trained lawyer, is a Senior Advisor with the World Health Organization (WHO) in Geneva where he leads a team working on global initiatives on antimicrobial resistance. He focuses on developing global instruments to combat antimicrobial resistance and to foster the development of new antimicrobial treatments. Peter was instrumental in setting up the Global Antibiotic R&D Partnership (GARDP), a foundation that is developing new antibacterial treatments.

image005Jean Carlet
Jean Carlet is trained in internal medicine, cardiology and intensive care, he has been the head of the ICU in Hospital St Joseph in Paris during 25 years. He got many different duties in the ministry of health in particular as the president of the Infection control national committee during 12 years, and in many other working groups. He has been president of the European Society of Intensive Care Medicine. He is now consultant, and president of the World Alliance Against Antibiotic Resistance (WAAAR), since 2011.

image005Floriana Cimmarusti
Floriana Cimmarusti is an international lawyer with 23 years of work experience gained in Italy, Belgium and Switzerland. She worked with a European law firm in Brussels and for a multinational company and a Swiss bank, gaining experience as lobbyist in the European banking and financial sector. In 2015, she joined SAFE-Safe Food Advocacy Europe as Secretary General.

image005Giancarlo Francese
Giancarlo Francese has several years’ experience in R&D Pharmaceutical Industry drug development in early, late, launch, and post-marketing stages. His focus and expertise is on Global Health programs in partnership with external Global Health key players. Within Novartis, he worked in collaboration with external organizations for the development and introduction of new Tropical Medicines with a special focus on Malaria innovative treatments for adult and paediatric populations.

image005Antonio Gaudioso
Antonio graduated in Political Science and is Secretary General of Cittadinanzattiva. He has been working for 20 years to promote and protect the rights of citizens and consumers, in Italy and in Europe. He took part to the writing of the European Patients’ rights Chart and he is engaged in the process of adoption of the first law about pain.  He is one of the founder of Forum Diseguaglianze Diversità whose aim is to study new public strategies and community actions to reduce inequalities and social discrimination.

image005Marc Lemonnier
Marc Lemonnier is a microbiologist and entrepreneur with over 25 years’ experience in antimicrobial research and development in academia and biotech. He is a member of the Board of the BEAM Alliance (European Alliance of Biopharmaceutical companies combating Anti-Microbial resistance). The BEAM Alliance is a network of ~70 small and medium-sized European companies collectively developing more than 100 innovative products focused upon the cure and prevention of bacterial infections.

image005Jo Maes
Born in Noorbeek, 19th march 1953, on the Dutch Belgium border. Always a European in feelings and mind. He worked in psychiatry for 22 years from 1977 till 1999, being among other things head of a department for sociale psychiatry in Maastricht. He worked 4 years for the Dutch Red Cross as policy manager from 1999 till 2003. From 2003 till his pension he has been the director of a NGO in the province of Dutch Limburg, working together with citizens to improve healthcare and social welfare.

image005Brian Maguire
Brussels-based journalist, producer and broadcaster, Brian Maguire, hosts live radio and television debates with European Commissioners, Ambassadors, Members of the European Parliament and independent experts. A EURONEWS Contributor and co-host, he also presents the EURACTIV series ‘The Presidency’ and ‘Over A Coffee’.

image005Neda Milevska-Kostova
Neda Milevska-Kostova is vice-chair of the Governing Board of the International Alliance of Patients Organisations (IAPO), UK, an umbrella in official relations with the WHO, representing 300 patient organisations in over 70 countries. Neda is also a Vice-president of Health First Europe, an umbrella organization based in Belgium working on improving access to innovative health technologies in Europe. She has over 20 years experience in health research, policy and patient advocacy.

image005Céline Pulcini
Céline Pulcini (MD, PhD) is Full Professor of Infectious Disease in Nancy, France. She has been coordinating the French Antimicrobial Resistance national action plan at the Ministry of Health since January 2019. As MoH representative, she participates in the EU-JAMRAI (Joint Action on Antimicrobial Resistance and Healthcare-associated Infections). Professor Pulcini was Chair of ESGAP, the European Society for Clinical Microbiology and Infectious Diseases (ESCMID) Study Group for Antimicrobial stewardship.

image005Julie Vermooten
Julie started her European Public Affairs carrier in 1995 with the Dutch Product Boards for Livestock, Meat and Eggs. After 3 years of active lobbying for Dutch agricultural interests, she was appointed to the French Business Confederation MEDEF as special advisor for Europe. For over 10 years, she focused on advocating French interests with members of the European Parliament. In 2008, Julie joined Cosmetics Europe, the Personal care association, as Public Affairs Director.

image005Mariano Votta
Director of Active Citizenship Network and Responsible for European Affairs at Cittadinanzattiva. He has more than 10 years of experience in the field of the protection of citizens’ rights, stakeholder engagement, communication and civic information. His was the idea to encourage and promote the Member of the European Parliament Interest Group “European Patients' Rights & Cross-Border Healthcare” at the European Parliament during 2015.

image005MEP Tiemo Wölken
Tiemo Wölken is a young politician from northern Germany. He has been active in local politics since 2003 in his home region and holds a LL.M. in International Law from the University of Hull, England. Since 2016, he is a lawyer in addition to being a Member of the European Parliament. Tiemo is the S&D Coordinator in the Committee on legal affairs and a Member of the Committee on Environment, Public Health and Food Safety.

MORE INFORMATION ON AMR:

- With the "New health programme" (EU4Health), EU Institutions help equip Europe against future health threats (and AMR is a key cross-border health issue for Europe). including "Advocate prudent and efficient use of medicines such as antimicrobials"

- AMR Industry Alliance 2020 “PROGRESS REPORT” (summary)

- Translating political commitments into action: the development and implementation of national action plans on antimicrobial resistance in Europe (Executive Summary)

EU Action on Antimicrobial Resistance: In June 2017 the European Commission adopted the EU One Health Action Plan against AMR, as requested by the Member States. On 12 February 2020 has been published also the progress report. This includes meetings of the AMR One Health Network and of the Health Security Committee to enhance cooperation and coordination on AMR and One Health visits to Member States to support the implementation of national One Health action plans. Other milestones include the publication of two overview reports respectively on measures to tackle AMR through the prudent use of antimicrobials in animals and on a series of audits carried out in 2017 and 2018 in order to evaluate the monitoring and reporting of AMR in zoonotic and commensal bacteria in certain food-producing animal populations and food.

- The EU’s fight against “superbugs”, especially bacteria which have become resistant to antibiotics, has brought little progress to date, according to a report from the European Court of Auditors.

More information about Covid-19 & AMR

- Tackling antimicrobial resistance in the COVID-19 pandemic

- How covid-19 is accelerating the threat of antimicrobial resistance BMJ 2020

- WHO Infographic: AMR and COVID-19

- Antonio Gaudioso: Antimicrobial resistance, a current emergency. Video interview with the Secretary General of Cittadinanzattiva (IT)

 

EUROPEAN PATIENTS’ RIGHTS DAY 2020: INITIATIVES ACROSS EUROPE
In the age of COVID-19, the 14th edition of the European Patients’ Rights Day (EPRD) represented an opportunity to send messages of hope and commitment addressed to all the European citizens from different healthcare stakeholders, partners of ACN. Here you can find the all the videos. Look also at some examples of hundreds of initiatives realized all around Europe.
The European Patients’ Rights Day has become a regular appointment to improve patients’ rights in Europe and in each Member State. If you wish to add an event dedicated to the celebration of the European Patients’ Rights Day in your country, please write to: d.quaggia@activecitizenship.net.

 

 

At European Level

 

HEALTH EUROPA (20 April 2020): European Patients’ Rights Day: nurses delivering direct patient care

 

At National level

BELGIUM
LUSS Ligue des usagers des services de santé Read more  

BULGARIA
HERA Read more (BG)
Blagoevgrad Read more (BG)

CROATIA
Trend TV Read more (HR)
Association for the Promotion and Protection of Patients' Rights' Zadar Patient ' Read more (HR) & Read more (HR)
Croatian Union of Nurses - Medical Technicians Read more (HR)

FRANCE
Conférence régionale de la santé et de l'autonomie des Hauts-de-France Read more (FR)
Psytoyens Asbl – Concertation Des Usagers En Santé Mentale Read more (FR)
Maison médicale Trooz Santé ASBL Read more (FR)
Village de la Justice  Read more (FR)
Centre Jean Perrin Read more (FR)

LITHUANIA
Asociacija Ausvis   Read more (LT)

POLAND
Fondazione Nutricia Read more (PL)
Rakoniewicki Read more (PL)

PORTUGAL
Entidade Regulaora de Saude Read more (PT)

SERBIA
Pharmaceutical World Read more (SR)

SLOVAKIA
AOPP Read more (SK)
Liga Proti Rakovine (Lpr) Read more (SK)

SPAIN
Somos Pacientes Read more (ES)
SomosDisca  Read more (ES)
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Ministerio de Asuntos Exteriores, UE y Cooperación Read more (ES)
Autismo Galicia Read more (ES)
Junta De Castilla Y León - Consejería De Sanidad  Read more (ES)
Diainternacionalde  Read more (ES)
DEBRA  Read more (ES)
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Plataforma de Afectados de Hepatitis C de Madrid (PLAfHC Madrid) Read more (ES)
La Rioja Read more (ES) and  Read more (ES)
Escuela del Salud y cuidados Read more (ES)
ILERNA on line Read more (ES)
A voces de carabanchel Read more (ES)
En familia AEP Read more (ES)
FEDOP Read more (ES)
Happylegs Read more (ES)
Texum Fisioterapia Read more (ES)
SAE Read more (ES)
Prevensystem Read more (ES)
20 MINUTOS Read more (ES)
Emerita Neuro Read more (ES)
Embajada de España en Chile Read more (ES)
GNdiario Read more (ES)
Junta de Andalucia Read more (ES)
Manifiesto Por Una Medicina Más Humana, Que Mira A Los Ojos Y Escucha Read more (ES)
IVI Global Education Read more (ES)

 

 

Extra EU

ARGENTINA
Fundación Argentina del Tórax Read more (ES)

News
Patients' Rights

Antibiotic Resistance Symbol Contest. And the winner is…
The EU-JAMRAI received almost 600 applications tothe contest “Be a change maker: craft your own symbol, wear it with pride and raise awareness about antibiotic resistance”. It is with great pleasure that we share with you the video with the winning symbol. Read more

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Antimicrobial resistance in European medical schools
Health Care Without Harm (HCWH) Europe launched the final report of its project to enhance AMR education in medical schools across Europe. The report features the results of a survey that assessed the educational needs of medical students in relation to AMR, showcases best practice examples from six universities in Europe and puts forward five recommendations for medical schools to ensure their students develop the necessary tools and skills to tackle AMR. Read more

Antibiotics’ resistance: Report on European doctors’ knowledge and attitudes  
On the occasion of European Antibiotic Awareness Day, The Standing Committee of European Doctors (CPME) published a report on European doctors’ knowledge of and attitudes towards antibiotics and antibiotics resistance. The report was prepared by CPME with the help of the Danish Medical Association (Laegeforeningen). Its findings are based on a European Centre for Disease Prevention and Control (ECDC) study on this issue. Read more

Call for AMR good practices 
The AMR Stakeholder Network, of which ACN is also a part, is collecting examples of good practices in the fight against superbugs from a One Health perspective. Help discover little known initiatives that have been successful in tackling this global public health threat. Submit your AMR good practice and read more here.

The Pharmaceutical Strategy is a chance to tackle antimicrobial resistance that Europe cannot miss
Last  October, MEPs have called on the European Commission to tackle antimicrobial resistance (AMR) through the new Pharmaceutical Strategy for Europe, that aims to ensure Europe’s supply of safe and affordable medicines in order to meet patients’ needs and support the pharmaceutical industry to remain innovative. Members of the MEP Interest Group on AMR have written a letter to Vice-President Schinas and Commissioner Kyriakides welcoming the initiative and calling for the strategy to integrate the development of, and access to, affordable and quality antimicrobials.

New initiative takes on the antibiotic innovation challenge
The world is losing its most powerful tool in healthcare: antibiotics. We need to take action now. Organized by IFPMA, EFPIA and VfA a New Pharma Initiative takes on the Antibiotic Innovation Challenge was launched last July. See the video

EP draft motion for a resolution on the Strategic Approach to Pharmaceuticals in the Environment
Last January, European Parliament calls on the Member States to share best practices in the preventive use of antibiotics and to reinforce the ‘One Health Action Plan Against Antimicrobial Resistance’; reaffirms the positions expressed in its resolution of 13 September 2018 on a European One Health Action Plan against Antimicrobial Resistance. In the same document, EP calls on the Member States and on the Commission to promote awareness-raising campaigns among veterinaries and physicians on the prudent use of pharmaceuticals, particularly of antimicrobials; calls on actors in the pharmaceutical supply chain to contribute to providing to patients with sufficient information on how incorrectly disposed medicines may negatively impact the environment; calls for on-pack labelling in the form of an appropriate pictogramme to inform consumers how to properly dispose of unused medicines. Read more

A Global Patient Consensus Statement and Call to Action on Antimicrobial Resistance
An AMR Patient Advisory Group convened by Pfizer, including PAGs and relevant international experts, is  drafting a “Global Patient Consensus Statement and Call to Action on Antimicrobial Resistance”. The document represents one of the priority initiatives of a newly established AMR Patient Alliance.
Through the Consensus Statement and Call to Action patient communities pledge to support actions to address AMR through 4 pillars: raising AMR awareness and strengthening health literacy; advocating for evidence-based solutions; ensuring a patient-centered approach in antimicrobial development and access; strengthening public health measures.
Please take the opportunity to contribute by providing your comments and feel free to endorse it. It will be used to engage with key stakeholders, including those in the EU. Read more

Active Citizenship Network is a new member of All.Can International
Active Citizenship Network just became a member of All.Can International, joining its community made by  representatives from patient organisations, policymakers, healthcare professionals, research and industry. The aim of this new collaboration is to work together towards All.Can International’s mission of improving the efficiency of cancer care by focusing on what matters to patients.

To know more about Cittadinanzattiva-Active Citizenship Network’s commitment on cancer care, please visit: www.cittadinanzattiva.it

Events

Increasing consciousness and access to treatment, reducing the burden of cardiovascular diseases across Europe
ACN has decided to increase the awareness of a growing number of patients’ rights associations on the importance of the prevention and management of NCDs. To do so, it was launched a multi-annual EU project with the aim of increasing consciousness on correct lifestyles and access to treatment, collecting good practices and reducing the burden of Cardiovascular Diseases across Europe. Read more

Join us! A cycle of online EU training seminars addressed to the leaders of civic and patients’ associations from different European countries, which are not yet particularly focused on the theme of cardiovascular protection, has been planned within the end of 2020. Next appointments:

14 - 15 December 16.30-18.30 (CET): “Infectious diseases prevention” & “New strategies of prevention, cure, and follow up”  For the REGISTRATION, click here (registration is mandatory)
Click on the following links to know more about all the presentations of the first two training seminars realized last 29-30 of October about Primary prevention and  on 16-17 November about acute care and chronic care. You can also watch the recorded training seminars.

26 - 27 JANUARY 2021 16:30 -18:30 (CET)
Webinars on "Successful advocacy experiences on CVDs" with national and European expert groups:

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The European conference of the XIV European Patients’ Rights Day has been realized thanks to the support of:

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With the scientific support of:

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Media Partners:

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Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Bianca Ferraiolo, Manuela Amadori, Maira Cardillo
Coordination and Production: Giacomo D'Orazio 

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