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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 8th, number 79 - April 2020


The European Patients' Rights Day in the age of pandemic
18th of April occurs the European Patients' Rights Day.
After many years, the reasons that led us to establish it in 2007 and to encourage its celebration throughout Europe year after year are more current than ever.
The dramatic situation who we are living is showing once again the relevance to improve the enforceability, the implementation of patients' rights in Europe and in each Member State to reduce health inequalities.

Although the official celebration at European level (scheduled for May 5 in the European Parliament), will be postponed, in the midst of the pandemic of COVID-19, this anniversary has a particular meaning. Read more


Active Citizenship Network is glad to announce a new website section totally dedicated to the European Charter of Patients’ Rights where it will be possible to find the Charter in your language and all the way to use it as an empowerment, informative, legal and monitoring instrument to enhance the respect of these fundamental human rights. The section will be on line from May, stay tuned and visit our website.

Patients' Rights

Video messages of hope and commitment

MEP Sara CERDAS (Portugal), S&D

MEP Miriam DALLI (Malta), S&D

Jasna Karačić
Permanent Representation of Croatia to the European Union (Croatia)

Nathalie Moll
Director General, European Federation of Pharmaceutical Industries and Associations (EFPIA)

Paul De Raeve
EFN’s Secretary General
European Federation of Nurses Associations

Eduardo Pisani
CEO, All.Can International

José Luis Baquero Úbeda
Director – Coordinator Cientifico
Foro Español de Pacientes (Spain)

Maria Teresa Flor de Lima
Coordinator of the Scientific Council of Chronic Pain Patients Association of Azores

Emete Imge
President of Universal Patient Rights Association (Cyprus)

Neil Betteridge
Strategic Adviser
European Alliance for Patient Access (EAfPA)

Claudia Tecglen
President of “Convives con Espasticidad” (Spain)

Ilaria Giannico
Secretary General, European Union of Private Hospitals (UEHP)

Paula Mouta
President of European Association of Educational and Preventive Health in Epigenetics (Portugal)

Elena Moya
Vice President of Asociación Española Contra la Meningitisn (Spain) and Regional Coordinator of Confederation of Meningitis Organizations (CoMO)

Stephen McMahon
Director, Irish Patients' Association (Ireland)

Arlinda Shehu
Together for Life (Albania)

Jordi Moya Riera
President of the Sine Dolore, European Pain Foundation (Spain)

Gerald Bachinger
Lower Austrian Patient and Nursing Advocate & speaker of the Austrian Patient advocates (Austria)

MEP Sabrina PIGNEDOLI (Italy), NA

Antonio Gaudioso
Secretary General Cittadinanzattiva (Italy)

Irene Schembri
National Patients' Organisation - Malta

Anke van Dam,
AFEW International

Statement from MEPs supporting the Interest Group

The patients' rights across Europe in the age of pandemic
Here you are contributions from two ACN’ partners, the Vedem - Civilian for Vaccination (Hungary) and EPECS-European Empowerment for Customised Solutions (The Netherlands).
Continue to send us video messages, stories and testimonies of civic commitment & protection of rights at the time of the pandemic, write to us at brussels@activecitizenship.net

European Patients' Rights Day 18th of April 2020
Message of the Board of EPECS
Dear Citizens, you and I are hit by a virus, spreading world wide on our tiny planet. It urges of all of us to play an active role. As citizens we run the risk to attract the virus and if vulnerable to become patients and eventually to die. On Patients' Rights Day 2020 especially we have a right as patients and citizens to ask of all governments, NGO’s and all companies all over the world to implement long term policies in which citizens as potential patients are much better protected. This includes implementing all over the world Corporate Social Responsibility and the SDG’s of the United Nations. The virus makes clear that viruses and bacteria are a very serious threat to mankind if we go on the way we did it up to now. It was a money making market in China where the virus this time jumped from animals to man. It are the rough mechanisms of the free market that makes us using large amounts of antibiotics in the meat industry worldwide, killing ourselves in the long run with resistant bacteria. We focus to much on Profit, forgetting the Planet and the People. Let's stop this insane behaviour of ours, ruining our Planet and the People!
On behalf of the Board of EPECS, Jo Maes, Chairman, 18th of April 2020

In the past monthly newsletter we have already described the contribution of our organization, Cittadinanzattiva, in the age of #COVID19 in Italy: 9 concrete actions addressed to citizens, patients, HCPs, National Health System, municipalities, private bodies. Here you can find our most recently initiative:

#COVID19 & advocacy activity for citizens
Since the beginning of the pandemic, Cittadinanzattiva has worked on the protection of citizens: our website hosts an daily updated guide with specific insights on health, transport, tax and taxes, school; links to official websites; short videos from experts; the contact details of our protection centers to avoid scams, fake news and speculation; even a chatbot.

#COVID19 & advocacy activity for chronic patients & therapeutic plans
We think it is an important sign of corporate social responsibility, and a qualifying result for our action which, at this moment, is aimed above all at strengthening the local dimension of continuity healthcare.
An initiative that support the strengthening the local dimension of continuity healthcare, is the availability that Cittadinanzattiva has received from Federfarma (the national federation representing over 16,000 private pharmacies in Italy) to deliver home medical devices, in addition to medicines. Federfarma and Cittadinanzattiva together asked the Regions to simplify as much as possible the procedures with which the chronically and rare patients can obtain directly in the pharmacy the drugs and the medical devices usually distributed in public structures. This measure is in line with the indication to limit the displacements and necessary to avoid exposing many patients to infection.
Furthermore, through the National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC), with a letter sent to the Presidents of the Regions, to the Regional Councilors for Health and to the Ministry of Health, we asked for an extension for at least 90 days of the supply of medical goods throughout the national territory indispensable for chronic patients, whose demand expires in the months of March and April. We are talking about people who use medical goods such as bags, plates, diapers, catheters, strips for measuring blood glucose, bags for special nutrition, protein-free foods, the periodic and extraordinary control of devices implanted for patients with heart failure, the devices for outpatient hemodialysis, for peritoneal dialysis and home hemodialysis and immunosuppressive drugs with direct and on-account distribution for organ transplant recipients, trachea-aspiration tubes, matte as well as all devices for mechanical ventilation and enteral nutrition. In recent days, together with the Italian Scientific Society of Internal Medicine (FADOI), we turned to the Italian Medicines Agency (AIFA) to extend the therapeutic plans, a request that the Agency accepted after a few hours.
A similar request has been sent to the Regions and to the Ministry of Health to ensure continuity in the use of the indispensable devices throughout the national territory, including through remote monitoring of clinical data, limiting the exposure of patients and healthcare professionals to the risk of infection and without distracting health workers from their emergency activities. The Sardinia Region has already responded to our request for information.

#COVID19 & advocacy activity for cancer patients
Together with representatives of medical-scientific community such as Periplo - which represents the Italian cancer networks - and the Foundation for personalized medicine, Cittadinanzattiva has send to the National and Regional Health Italian Authorities, a request in order to adopt new measures to guarantee the continuity of treatment for cancer patients outside hospitals, in a more safety contest, able also to decongest the hospitals. Here you can find the official request and an article (both in IT language).

#COVID19 & advocacy activity for covid patients
Federfarma and Cittadinanzattiva propose to distribute antivirals and antimalarials for coronavirus sufferers also in pharmacies, highlighting how the distribution of these drugs through pharmacies will not only reduce displacements, but will also allow the pharmacist to monitor patient adherence to therapy and to acquire useful information on the correct use of the drug on compliance with the therapeutic plan ". Read more (IT)

# COVID19 & advocacy activity for the prison population
Protect the health of mothers and children in prison. A priority that affects all prisoners with the Covid-19 emergency. Cittadinanzattiva's letter of appeal to the Minister of Justice. Read more (IT)

# COVID19 & its impact in Assisted Healthcare Residences
To control contagion in Assisted Health Residences (RSA), urgent regional extraordinary plans must be adopted as soon as possible. Cittadinanzattiva's letter of appeal to the Regions. Read more (IT)

#COVID19 & its impact on the vaccination plan
The Italian Federation of General Practitioners-FIMMG (Italian Federation of General Practitioners) and Cittadinanzattiva have written to the Government and Regions for setting up a flu and pneumococcal vaccination campaign that starts early, in October, and that provides for the lowering of the free administration to 55 years. Indications involving the need for additional supplies of flu shots. Read more (IT)

# COVID19 & concrete proposal to improve the integrated home care
Cittadinanzattiva puts forward a proposal to amend the draft conversion law of the so-called "Cura Italia" to strengthen socio-health and home care for the chronically and rarely ill, immunosuppressed, acute non-hospitalized and disabled people who are not self-sufficient through the financing of extraordinary three-year plans by the Regions. The amendment was presented to the Senate on the proposal of Cittadinanzattiva and over 70 associations and aims to reduce the tax benefit for heated tobacco cigarettes: 1.2 billion euros would be obtained in 3 years to be used for integrated home care. Watch the video of Cittadinanzattiva’s Secretary General and read the incredible decision taken inside the Italian Parliament (IT).

# COVID19 & fight against speculation
The coronavirus emergency has made protective masks more and more important and frequently unavailable or available at particularly high prices, with cases of real speculation. Hence the appeal of Cittadinanzattiva to the Governors to regulate the price of the masks. Read more (IT)

#COVID19 & fund raising for general practitioners’ safety
It continues the fundraising campaign “Help us protect your family doctor” launched last 16 of March 2020 by Cittadinanzattiva and the Italian Federation of General Practitioners-FIMMG (Federazione Italiana Medici di Medicina Generale): with only 1 Euro you can help us purchase personal protective equipment to be distributed to all the family doctors working in Italy. We need you! For donation, click here.
A warning sign has come to us in the last few days, when 13 other pharmaceutical companies, those with Italian capital associated with Farmindustria (the so-called "Fab13": Abiogen Pharma, Alfasigma, Angelini, Chiesi, Dompè, IBN Savio, Italfarmaco, Kedrion, Neopharmed Gentili, Menarini, Molteni, Recordati SpA, Zambon) have joined the fundraising of FIMMG and Cittadinanzattiva by donating instrumental resources for an economic value of three million euro to the use of the entire National Health System. Read more (IT)
Cittadinanzattiva and FIMMG also thank the Servier Group in Italy that has decided to donate 300 thousand euros for the purchase of individual protection devices to distribute to the family doctors involved in the national territory. Read more (IT)
Cittadinanzattiva and FIMMG also thank the Menarini Group that has decided to contribuite to find personal protective equipment to the GPs by donating 350.000 (FFP2 and others) masks. Read more (IT)

#COVID19 & foreign communities living in Italy
For the information and the empowerment of people, especially those at greatest risk of exclusion, together with Assogenerici and the Equivalente.it portal, Cittadinanzattiva has launched the social campaign "Why no one remains excluded", with the aim of providing all foreign communities present in Italy mother tongue information on how to avoid dangerous behavior and therefore contribute to stop the spreading of the infection. The campaign unfolds thanks to a video in 11 languages, a part of Italian: English, French, Spanish, Portuguese (Brazilian), Romanian, Arabic, Russian, Filipino, Punjabi (India and Pakistan), Hindi (India), Bengali.

#COVID19 & its impact on General Practitioner
The campaign "#KeepCalm, Together, without fear", aimed to prevent/reduce infection among HCPs, has been launched and it sees Cittadinanzattiva alongside the Italian Federation of General Practitioners (Fimmg): it is just started from Northern Italy the distribution of disinfectant gel, information material and the first PPE-personal protective equipment, found with many difficulties thanks to the support of Roche who, in such a difficult and ever-changing situation, was the first company to comply with our request for support to family doctors. Read more (IT)

#COVID19 & a Joint commitment fo Italian Pharmacists
All health workers, doctors, pharmacists, nurses, technicians, are doing an exceptional job in this emergency, sometimes even at the cost of their own lives. Teva Italia wanted to respond to the appeals of Federfarma and Cittadinanzattiva regarding the need to equip Italian pharmacists with suitable personal protective equipment by donating 40,000 KN95/FFP2 masks. "As Cittadinanzattiva we have decided to do our utmost to support local and local services, family doctors and community pharmacies. We are therefore happy that there is the possibility of making a concrete contribution to those who are working on the front lines like pharmacists", says Antonio Gaudioso, secretary general of Cittadinanzattiva. Read more (IT)

#COVID19 & solidarity to vulnerable people
Cittadinanzattiva also joined the initiative "The time of kindness" promoted by the Italian Red Cross to carry out a home-based grocery shopping and medicines service for the elderly, fragile and immunosuppressed people who live alone. Read more (IT)

#COVID19 & its impact on democracy
The compression of many of the personal freedoms guaranteed by the Constitution occurs precisely when Parliament - the guarantor of the rights of each of us - is unable to meet and fully perform its functions. The reopening of the Parliament is not just a return to "normal democratic life", but a message to the whole nation. The appeal to institutions promoted by Italian civil society, to which Cittadinanzattiva has joined. Read more (IT)

#COVID19 & going beyond the emergency: a cycle of webinars organized by Cittadinanzattiva
In addition to the emergency, 10 collective learning opportunities for citizens who want to make a difference. The Civic Higher Education School of Cittadinanzattiva organizes a cycle of free webinars to share information, experiences, reflections on the current time, protection and support tools, and to prepare to start again. Our webinars are open to everyone, citizens, patients, caregivers, people in conditions of fragility but also professionals, third sector organizations, women and men engaged in companies, public administration and institutions. Read more (IT)

#COVID19 & 0-6 years old
The School of Cittadinanzattiva decided to dedicate a special section of the XIV Scafidi Prize to "The 0-6 at the time of Covid 19" to collect the good practices made with young children, make them known, disseminate and reward the most significant ones. Read more (IT)

#COVID19 & its impact on the school
Since a month, the lessons at school have been transferred online. Cittadinanzattiva-Lazio started a civic monitoring to understand what the situation is and try to suggest improvings. Read more and see the questionnaire (IT)

#COVID19 & young people life during the lockdown
Active Citizenship Network, as a member of the Young Coalition for Prevention and Vaccination, took part to Think Young’s social media campaign to share tips, advice and good practices for the younger generations during the lockdown. Our video

#COVID19 & medical liability
Cittadinanzattiva will not accept legal assignments, or even just the request for advice, to sue the health professionals involved in the CoVid-19 emergency. The position taken by the association is clear and has always been committed to defending the rights of the sick, but this time it is not going to ride the wave of what it calls "jackals". Read more (IT)

#COVID19 & editorials
IT language:
Cosa stiamo imparando (forse) sul servizio sanitario nazionale, by Antonio Gaudioso
Cosa vuol dire prendersi cura delle persone oggi? by Antonio Gaudioso
La spesa pubblica in sanità nell’Italia del Covid-19, by Anna Lisa Mandorino
2020: un nuovo umanesimo, by Giuseppe Cotturri
Non ci sono solo i malati di Covid, anche gli altri pazienti fragili necessitano di cure, interview with Antonio Gaudioso

EN language:
Can We Reimagine Global Health In The Post-Pandemic World?, by Madhukar Pai
Energy consumer protection at the time of Coronavirus: a case study, by Marine Cornelis
Indoors, but active and open more than ever to collaboration. From Italy, a story of ordinary civic commitment to protect health as a common good,by Mariano Votta

Network News

1st European Forum on Health and Epigenetics 2020 - 18th to 30th April 2020 (Lisbon – Portugal) Portuguese celebration of the “European Patients' Rights Day”

The European Forum on Health and Epigenetics 2020 aims to accompany, learn and practice the best way to make the path of health: food and all preventive ways of protecting the balance of human beings, may be the most powerful medicine to reduce the risk of disease. In this first edition the Forum will address the topic of the SARS-Cov-2-COVID-19, and on 18th April the Forum will also host the Portuguese celebration of the “European Patients' Rights Day” in order to better underline the value of the European Charter of Patients' Rights.
Due to current circumstances, the Forum has been adapted for online format, with communications on the 18th, 21st, 24th, 28th and 30th April, which will be broadcast between 11 am and 1 pm (GMT+1) on open access. For further information, please visit the website of the AESEP-European Association for Educational and Preventive Health in Epigenetics. For the programme, click here.
Watch the welcome message by Paula Mouta, President of AESEP and visit the FB AESEP page.
Watch the video message and listen the interview to the Director of ACN, Mariano Votta (ENPT).


EUvsVirus: a pan-European Hackathon
The European Commission, in close collaboration with EU member states, will host a pan-European hackathon to connect civil society, innovators, partners and buyers across Europe to develop innovative solutions to overcome coronavirus-related challenges. Now is your chance to help tackle coronavirus! When? 24, 25 and 26 April. Read More

Unicef: alarm to stop vaccinations due to pandemic
Across the world, the Covid-19 pandemic is severely testing health services, while health workers are destined to support the response. As the pandemic progresses, essential life-saving services, including vaccinations, will likely be discontinued, especially in Africa, Asia and the Middle East, where they are extremely needed. Read more


European celebration of the XIV edition of the European Patients’ Rights Day postponed
The European celebration of the annual edition of the European Patients’ Rights Day at the European Parliament, focused on Antimicrobial Resistance (planned at the EU Parliament next 5th of May), should be postponed due to the COVID-19 restrictions.


Director and Editor in chief: Mariano Votta
Editors: Daniela Quaggia, Federico Foti, Giulia Decarolis, Maira Cardillo
Coordination and Production: Giacomo D'Orazio

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

Active Citizenship Network c.o. Cittadinanzattiva - Via Cereate 6 - 00183 Roma - Tel. +39 6 367181 - Fax +39 6 36718333
Representative office to the UE: Rue Philippe Le Bon, 46 - 1000 Brussels (Belgium)
Tel: (+39) 340 84 65 097 Mail: brussels@activecitizenship.net