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research article | DOI: https://doi.org/10.31579/2690-8816/057
1* Director of Active Citizenship Network, c/o Cittadinanzattiva APS. Via Cereate, 6 - 00183 Rome (Italy).
2 Junior Project Manager, Active Citizenship Network, c/o Cittadinanzattiva APS, Via Cereate, 6 - 00183 Rome, Italy.
3 Community & Fellowship Assistant, Active Citizenship Network, c/o Cittadinanzattiva APS, Via Cereate 6, 00183 Rome, Italy.
*Corresponding Author: Mariano Votta. Director of Active Citizenship Network, c/o Cittadinanzattiva APS. Via Cereate, 6 - 00183 Rome (Italy).
Citation: Mariano Votta, Maira Cardillo and Michaela Papavero. (2022). Isolated but not alone: the response to the pandemic in the story of pags: from the italian case history to the global health summit “rome declaration”. J. Clinical Research Notes. 3(3); DOI: 10.31579/2690-8816/057
Copyright: © 2022 Mariano Votta1, This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Received: 01 February 2022 | Accepted: 25 February 2022 | Published: 16 March 2022
Keywords: Patients with chronic and rare diseases; Patients Advocacy Groups; Chronic Policies; Italy; European Union; Civic participation; Citizens’ engagement; Patients’ rights
Struggling with practical problems such as the sudden cancellation of scheduled visits and exams and a sense of abandonment and uncertainty. This is how the “ordinary” patients lived the period of the health emergency in Italy. At the same time, civic and rights protection associations, since the beginning, have been active with a sense of responsibility, creativity, and energy, often revealing themselves to be the only point of reference and the only service available to citizens.
This is the double side of the coin, in the implications of the pandemic on chronic and rare patients, which emerged from the XVIII National Report on Chronic Policies of Cittadinanzattiva, presented on October 13th, 2020, and entitled: “Isolated but not alone: the response to the pandemic in the story of Patients Advocacy Groups (PAGs)” [1]. The Report arised from the story of 34 Italian associations of patients with chronic and rare diseases who adhered to the National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC) [2] of Cittadinanzattiva [3].
This experience - thanks to Active Citizenship Network [4] - was first socialized on the occasion of the 15th European Patients' Rights Day held on May 5th & 6th, 2021 [5], and then brought to the attention of the leaders of the G20 and other states, gathered together with the heads of international and regional organizations on the occasion of the Global Health Summit held in Rome on May 21, 2021 [6].
The XVIII National Report on Chronic Policies was first being talked about by Cittadinanzattiva in the midst of the first Covid-19 lockdown. Lives had just been turned upside down and activities had to be reorganized with the necessity of multiplying the political initiatives to protect citizens, especially the most fragile, and the information interventions that the situation required. In such a vulnerable and unclear context, even a well-established and eagerly awaited event such as the publication of the National Report on Chronic Policies had to find meaning and sense within the experience of the Covid-19 pandemic.
This is how Cittadinanzattiva chose to make the 2020 CnAMC National Report a collective account of what the Italian associations have experienced, especially during the first phase of the pandemic, which was that of the extension of the containment measures of the "red zones" to the entire country. This collective story aimed at outlining the experiences of those who - with a chronic or rare pathology - were "more isolated" than others; at highlighting the problems that people with chronic or rare diseases have encountered in their relationship with a health service totally and "heroically" focused on mitigating the health emergency, but which has at the same time clearly revealed the limits that existed even before the pandemic. The story also demonstrated, through the lives of people with chronic and rare diseases during Covid-19, that if the National Plan for Chronic Diseases had been implemented at all levels, much of the suffering could have been avoided. Still, on the positive side, the story showed - in a tangible way - the great reforming force of civic organizations, capable of responding promptly to new needs by organizing services, building alliances, pointing out necessary regulatory or procedural changes, mobilizing resources (human and economic), innovating their own modes of operation, and introducing and/or promoting practices which will be difficult to abandon when it is all over.
In this regard, the title of the 2020 Report underlines how, despite the dramatic experience of isolation lived during the difficult phase of the lockdown, the associations have represented for millions of people affected by chronic and rare diseases an essential point of reference. This was the first time that such a large group of associations - in a convinced and participatory way - used the tool of storytelling to describe a dramatic moment in our lives and traced clear perspectives for the immediate future of policies on chronicity.
Below is the list of the 34 Italian associations belonging to the CnAMC that have actively participated, with their own testimony, to the contents of the XVIII National Report on Chronic Policies, which was realized thanks to the unconditional support of MSD.
This section of the article hosts both a summary of the major issues faced by patients but also a set of recommendations put forward by patient associations.
Patients’ discomforts
Starting from the lockdown and continuing with the consequences that are still visible today, the pandemic has caused countless effects on patients with chronic and rare diseases. Above all, the Report has highlighted several major patients’ discomforts.
More than two in five patients reported canceled visits, exams, or surgeries; more than one in three had difficulty in keeping in touch with specialists and centers of reference for their pathology; more than one in ten did not have the personal protective equipment or did not find the drugs they needed because, very often, they were used for Covid-19 patients. In addition to the "practical" difficulties, there were psychological discomforts, reported by almost three out of five citizens, including uncertainty, fear, anxiety and sadness, a sense of loneliness, anguish, fatigue, and confusion.
The associations’ response
From the forensics lab for growth hormone deficient kids to the online help desk for women with fibromyalgia, from online yoga classes for endometriosis to the game on rare diseases, over 85% of associations have enhanced their activities to stay in contact and support their members, in the most varied ways and fields. 70% increased communication channels to their members; 50
Each of the authors confirms that this manuscript has not been previously published by another international peer-review journal and is not under consideration by any other journal. Additionally, all of the authors have approved the contents of this paper and have agreed to the Epidemiology and Public Health Research Journa
Authors’ contribution
Each named author has substantially contributed to conducting the underlying research and drafting this manuscript. Additionally, to the best of our knowledge, the named authors have no conflict of interest, financial r otherwise.l’s submission policies.
The authors listed on the first page declare that they do not have any conflict of interest.
The authors would like to thank the CnAMC colleagues, starting from Tiziana Nicoletti, Coordinator of the Chronicity Policies of Cittadinanzattiva.
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