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Monthly Newsletter edited by Cittadinanzattiva-Active Citizenship Network
Civic Activism | Patients' Rights | Consumers' Rights | Support ACN
Year 9th, number 87 - January 2021

To virtually attend the event, please click here

Highlight

Agenda 2030, the future of Europe & citizen engagement
Active Citizenship Network is delighted to invite you to “Making sustainability an easy choice for EU citizens”, a digital conference during which will be presented the informal Inter-institutional Group “SDGs for well-being and consumers’ protection”, promoted by Cittadinanzattiva through its EU branch ActiveCitizenship Network (ACN), the European Consumers Union (ECU) and the Italian Alliance for Sustainable Development (ASviS)
The initiative is already endorsed by several MEPs and 47 among National and EU Associations.
The Inter-Institutional Group represents the desire of the civil society to contribute to the SDGs and the Green New Deal, aiming to discuss and raise awareness on how each one of us as EU citizens can give her/his contribution. In fact, we strongly believe that citizen and consumer empowerment should be the pillar of the transition towards a more inclusive and sustainable Europe. The group will be opened to all the representatives and members of the EU Institutions that wish to dialogue with the civil society to contribute that Europe will be a global leader in the development and implementation of the SDGs. From our perspective, it is also ideally an example of the thematic citizens’ agoras encouraged by the EU Parliament within its resolution on the Conference on the Future of Europe. Read more

Focus

III European Civic Prize on Chronic Pain: Postponed to 30 of April the deadline to collect the good practices, PARTICIPATE!
Active Citizenship Network has decided to extend to the 30 of April 2021 the deadline for the collection of good practices against pain, cancer and not cancer related. The third edition of the Prize allows us to continuing expanding the “agora” of operators of good practices on pain, encouraging the exchange of experiences among health professionals, healthcare providers, Institutions, civic associations, and patient advocacy groups. Exceptionally, for this edition, the Prize recognizes also outstanding initiatives that have been put in place, modified, or updated to face and mitigate the COVID – 19 pandemic consequences on chronic pain patients’ life. The project has been supported by publication and a social media campaign, during the first and the second half of the 2020. To know more, click here; to submit a valuable experience, please fill in the online form

News

THE PATIENTS’ RIGHT  TO AVOID PAIN: OUR COMMITTMENT AT THE EU LEVEL

Supporting  the European Pillar of Social Rights as Ambassador
Invited by DG Employment, Social Affairs and Inclusion, since January 2020, Cittadinanzattiva trought its EU branch Active Citizenship Network has been officially recognized as an Ambassador of the European Pillar of Social Rights, a vital instrument to achieve social justice and equality in the EU. Our role is to support communication initiatives to spread the 20 principles of the Pillar and the importance of a social European dimension. At the European level, chronic pain has a major impact on workforce participants and productivity and is not adequately acknowledged nor addressed. In this context, one of our main interest is to develop the topic of chronic pain in the context of the European Pillar of Social Rights, with particular attention to the need of citizens suffering of (low) back pain. Read more about our committment.

Publications
Along the 2020, Active Citizenship Network published several article on international peer review journals, healthcare specialized media and generalist journal. In details:

- JOURNAL OF MEDICAL RESEARCH AND HEALTH SCIENCES  (Volume 03 Issue 12 December 2020): The relevance of pain management & relief in the COVID-19 outbreak: an evaluation of the ten years implementation of the dedicated law in Italy

- PUBLIC HEALTH AND RESEARCH JOURNAL (Volume: 2, Issue: 2): Addressing (Low) Back Pain in the Era of the European Pillar of Social Rights: Assessing Impact and Sharing Good Practices Across Europe

- MATHEWS JOURNAL OF NURSING AND HEALTH CARE (Volume 2, Issue 1 - 2020): The Relevance of the “Charter of Rights against Unnecessary Pain” in the Framework of the Europe’s Beating Cancer Plan

- HEALTH EUROPA QUARTERLY- Issue 14 (Sept 2020): “Tell us about your way of working with chronic pain and win!”

- HEALTH EUROPA QUARTERLY (10th July 2020): “Tell us about your way of working with chronic pain and win!”

- THE INNOVATION PLATFORM (Issue 01 - March 2020): Towards an EU network of good practices’ managers to better address the societal impact of pain

Training on Non Communicable Diseases: focus on pain
In the framework of the EU project Increasing consciousness and access to treatment, reducing the burden of cardiovascular diseases across Europe, the training seminars addressed to the leaders of civic and patients associations also dealt with the issue of pain manifestations in patients with CVDs. To learn more click here

Agreements to reinforce our policy on the struggle against pain at the national, EU and international level
Along the 2020, Active Citizenship Network signed several Memorandum of Understanding with the following associations:

- NO PAIN Onlus, an italian association focused on the treatment of pain. In particular, NO PAIN has accepted to join the Jury of the III edition of the “European Civic Prize on Chronic Pain - Collecting Good Practices”. 

- Associação de Doentes de DorCrónica dos Açores (ADDCA), a Portughese association hystoric partner of ACN on the topic of pain;

- LisKen Caribbean Against Pain Organization, a Dominica Republic association also in contact with EU entities devoted to the topic of cronic pain.

THE PATIENTS’ RIGHT TO AVOID PAIN: OUR COMMITTMENT
AT THE NATIONAL LEVEL (ITALY)

Webinar “Dolore, 10 anni di legge 38”- “Pain, 10 years of the Law 38”: Everything that general practitioners and citizens need to know to apply it in the best possible way, even in times of emergency.
The webinar organized last December was aimed above all at general practitioners in order to spread the knowledge of Law 38 of 2010, “Provisions to guarantee access to palliative care and pain therapy”, with the unconditional contribution of Grunenthal. The general practitioner is the first person, in the health sector, with whom we relate when we need care and is also the fundamental link between the specialist and the patient. We do not want the right to avoid unnecessary pain and suffering to become a rearguard battle, penalizing the quality of life of those who already have a pathology, making the condition heavier and unbearable, depriving the person of a perspective and a project of life. Even today, despite ten years have passed since its emanation, it is little known. It is necessary to fill this knowledge and information gap and restore the central role in the treatment path to the relationship between doctor and patient and the awareness that healthcare professional and person who is ill / in need of care / patient are both undisputed protagonists of the care path. To learn more, click here.

IN-Dolore  webinar
Last November, experts in the field, including Cittadinanzattiva, discussed the state of the art of Law 38: the rights of patients to not suffer, the services provided, the methods of access to the centers and the problems that remained open. To learn more, click here (IT).

Civic Survey on IT Law 38/2010: “WERE NOT BORN TO SUFFER”
On 5 November 2020, the data of the monitoring conducted in Italy by Cittadinanzattiva on law 38/2010 were presented. Ten years after Law 38/2010 which regulates access to palliative care and pain therapy, how well do citizens know the contents of the law and their rights? Click here to see the recorded webinar. Click here to download the Report (IT), for a summary click here (IT - EN).

Web series on combating chronic pain
Four first-person video stories that highlight the daily battles against pain of patients with chronic pathology. This is the content of the mini web series released in June 2020 by Cittadinanzattiva, as part of the campaign "We are not born to suffer", promoted on the occasion of the 10th anniversary of Law 38 which regulates access to palliative care and pain therapy and which puts Italy in a vanguard position for citizens' rights. For the videos click here (1,2,3,4). (all in IT language)

Informative campaign on IT Law 38/2010: “WERE NOT BORN TO SUFFER”
“We were not born to suffer": this is the name of the campaign launched in May 2020 by Cittadinanzattiva, ten years after the law 38/2010 which regulates access to palliative care and pain therapy and which puts our country in a leading position for citizens' rights.
The campaign starts with a questionnaire addressed to citizens to investigate the actual knowledge of the contents of the law and an information leaflet, in digital format, with gives the main information on possibilities on the subject. To know more, click here (IT - EN).

Learn more about the pain of young patients
Launched on the occasion of World Anesthesia Day, the "Ready to go" project is an initiative of MSD in collaboration with Cittadinanzattiva and SARNePI (Italian Society of Anesthesia and Italian Neonatal and Pediatric Resuscitation). The goal is to raise awareness and inform people also on the subject of pediatricanesthesia and on the pain of young patients. To learn more click here, to download the poster click here, for the videos click here. (all in IT language)

Patients' Rights

SIP’spledge to uphold and implement the European Pillar of Social Rights
To support the implementation of the Pillar, and prepare the ground for the Pillar’s Action Plan (to be presented in early 2021), the Commission launched a call for pledges to implement the Pillar from European, regional and national stakeholders. Societal Impact Pain (SIP) mapped seven out of the 20 Principles of the European Pillar of Social Rights that link directly to SIP’s four priorities: indicators, education, employment, research. Read more

The importance of rehabilitation for chronic low back pain: an observational study
Low back pain is a terrible burden for health care systems and global society. A recent research is focusing the attention on the importance of rehabilitation, mixed with food for medical purposes that has been demonstrate useful in chronic pain patients. It is focusing a management model with very low use of drugs, hence reducing their side effects. Read more.

Chronic pain: Investigation on the efficacy of new stimulation paradigms
Spinal cord stimulation (SCS) has shown to be an effective therapy for various chronic pain conditions, improving the quality of life of patients, and reducing medication intake on the long term. However, some chronic pain patients  can develop tolerance / habituation over time. A combination therapy can address this issue effectively in the majority of them as a research has shown. To read the recent publication, click here.

Female-focused research on pain relief
Female-focused research is one key aspect of creating precision drugs & personalized medicine. Increasingly, data are highlighting sex differences in the mechanisms underlying chronic pain. However, most research is still conducted in males. This new research, just published, shows abnormal subgenual anterior cingulate circuitry is unique to women but not men with ankylosing spondylitis related chronic pain. Read more

Acmella oleracea for pain management
Acmella Orbacea is a herbaceous plant whose flower is traditionally used to treat oral pain. A recent study confirms the anti-inflammatory and antioxidant activities of the plant, which could therefore be a valid ally for pain management, especially in chronic degenerative diseases, but all this must necessarily be reflected in clinical studies. Read more.

US: Osteoarthritis Action Alliance Research Study Opportunity
Did you know that your weight can impact joint pain? If you have knee or hip pain, you may be able to help researchers understand what people with arthritis want to know from their doctors about weight management and nutrition strategies to reduce joint pain. One of the Osteoarthritis Action Alliance's goals is to develop resources for individuals with osteoarthritis (OA) that provide them with the knowledge, skills and confidence to effectively manage their symptoms. We are beginning to develop patient materials that relate to nutrition and OA management; we are seeking input from people with OA to help shape the content of these materials and the format that would be most effective for adults with OA. Click here to learn more about this research study supported also by the American Chronic Pain Association.

Network News

Spain: the Sine Dolore Association, new member of the board of the Pain Alliance Europe
The president of the Sine Dolore Association, historic spanish partner of ACN, has been selected to form part of the Board of Directors of the Pain Alliance Europe (PAE), in which is involved since many years Cittadinanzattiva trought its EU branch Active Citizenship Network. Read more

Portugal: The Chronic Pain Patients Association of Azores (ADDCA) elected a new Board Member of PAE
ADDCA, the historic portuguese partner of Active Citizenship Network, has been recently elected a new Board Member of PAE for 2021-2024. Read more

Portugal: Chronic pain condition across Europe in the age of Covid-19. Survey launched 
What about the impact of chronic pain across Europe in the age of Covid-19, according to the PAGs (patients advocacy group) and chronic pain patients organizations? A new survey is now launching thanks a partnership between Centro Interdisciplinar de Ciências Sociais - Pólo da Universidade dos Açores, CICS.NOVA.UAc (Research Center in Social Sciences at Universidade Nova de Lisboa) and the Chronic Pain Patients Association in the AzoresCollaborative partners are Active Citizenship Network (ACN) and Sine Dolore - European Pain Foundation, leading the  Pain Euro-Mediterranean Coalition, the informal network of manager & operators of best practices to facilitate the exchange of knowledge. One of the main aims of the survey is to contribute to develop the topic of chronic pain in the context of the European Pillar of Social Rights because at the European level chronic pain has a major impact on workforce participants and productivity and is not adequately acknowledged nor addressed.  To know more, please contact  Maria Teresa Flor de Lima from the Chronic Pain Patients Association of Azores (ADDCA)

Events

16th of January 2021: XV Edition “Malattia Dolore e Rete Territoriale”
Cittadinanzattiva, trought its EU branch Active Citizenship Network has been invited as speaker to share patients emerging needs and good practices in the pain management. To download the programme, click here, for the registration here

26 - 27 January 2021: Webinars on "Successful advocacy experiences on CVDs" with national and European expert groups”
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. The planned webinars in January will host experts and will allow us to better define our next EU campaign on the topic. Read more

29th of April 2021: First Congress of the new Spanish Multidisciplinary Pain Society (SEMDOR)
Active Citizenship Network has been invited as relevant speaker by SEMDOR to underline the citizens and patients involvement in the struggle against chronic pain. SEMDOR is a new scientific society on pain with a multidisciplinary approach, in which doctors, pharmacists, psychologists, nurses and other health specialists interested in pain will be integrated to constitute a society in the fight against pain. To know more click here.

 


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

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