Open Access Peer-reviewed Commentary

Main Article Content

Mariano Votta corresponding author
Maira Cardillo
Michaela Papavero

Abstract

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)". 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) of Cittadinanzattiva. This experience thanks to Active Citizenship Network was first socialized on the occasion of the 15th European Patients’ Rights Day held on May 5th & 6th, 2021, 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.

Keywords
patients with chronic and rare diseases, Patients Advocacy Groups, Chronic Policies, Italy, European Union, civic participation, citizens’ engagement, patients’ rights

Article Details

Supporting Agencies
The authors would like to thank the CnAMC colleagues, starting from Tiziana Nicoletti, Coordinator of the Chronicity Policies of Cittadinanzattiva. The authors would also like to thank the supporters of the last two editions of the European Patients' Rights Day. In particular, the 2021 Edition of the European Patients' Rights Day was realized thanks to the unconditional support of F. Hoffmann-La Roche LTD, Teva Europe, Boehringer Ingelheim International GmbH, and Viatris. The 2022 Edition of the European Patients' Rights Day was realized thanks to the unconditional support of Boehringer Ingelheim International GmbH, Illumina, MSD, Teva Europe, and Viatris.
How to Cite
Votta, M., Cardillo, M., & Papavero, M. (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". Advances in Health and Behavior, 5(1), 200-207. https://doi.org/10.25082/AHB.2022.01.002

References

  1. Cittadinanzattiva, CnAMC: XVIII National Report on Chronic Policies “Isolated but not alone: the responseD4:D60 Patients Advocacy Groups (PAGs)”, 2020 (IT language). https://www.cittadinanzattiva.it
  2. National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC) of Cittadinanzattiva. https://www.cittadinanzattiva.it
  3. Cittadinanzattiva. https://www.cittadinanzattiva.it
  4. Active Citizenship Network. https://www.cittadinanzattiva.it
  5. Active Citizenship Network: XV European Patients’ Rights Day 2021, 5 May 2021. https://www.activecitizenship.net
  6. Global Health Summit 2021. https://global-health-summit.europa.eu/index_en
  7. A.Fa.D.O.C. Associazione di famiglie di soggetti con deficit Ormone della Crescita e Sindrome di Turner (IT language). https://www.afadoc.it
  8. AIDE – Associazione Italiana Dislipidemie ereditarie (IT language). https://www.aide.it
  9. A.L.I.Ce. Italia Associazione per la Lotta all’Ictus Cerebrale (IT language). https://www.aliceitalia.org
  10. A.M.R.I. Associazione per le Malattie Reumatiche Infantili (IT language). https://www.amri.it
  11. A.N.I.F. Associazione Nazionale Ipercolesterolemia Familiare (IT language). http://www.associazioneanif.it
  12. A.N.I.Ma.S.S. Associazione Nazionale Italiana Malati Sindrome di Sjogren (IT language). https://www.animass.org
  13. A.P.E. Associazione Progetto Endometriosi (IT language). https://www.apendometriosi.it
  14. AICH-Roma Associazione Italiana C`orea di Huntington di Roma (IT language). https://www.aichroma.com
  15. AICMT Associazione Italiana Charcot – Marie -Tooth Onlus (IT language). http://www.aicmt.it
  16. AIL Associazione Italiana contro le leucemie - linfomi e mieloma (IT language). https://www.ail.it
  17. AISF Associazione Italiana Sindrome Fibromialgica (IT language). https://sindromefibromialgica.it
  18. AISLA Associazione Italiana Sclerosi Laterale Amiotrofica (IT language). https://www.aisla.it
  19. AltroDomani Onlus (IT language). https://www.altrodomani.it
  20. Associazione AMICI onlus - Associazione Nazionale per le Malattie Infiammatorie Croniche dell’Intestino (IT language). https://amiciitalia.eu
  21. AMIP Associazione Malati di Ipertensione Polmonare (IT language). https://www.assoamip.net
  22. AMOR Associazione Malati in Ossigeno - ventiloterapia e Riabilitazione (IT language). https://www.associamor.com
  23. ANF Neurofibromatosi (IT language). http://www.neurofibromatosi.it
  24. Anmar Italia Associazione Nazionale Malati Reumatici (IT language). https://www.anmar-italia.it
  25. ANNA – Associazione Nazionale Nutriti Artificialmente (IT language). https://www.associazioneanna.it/
  26. As.Ma.Ra. Associazione Malattie rare Sclerodermia ed altre malattie rare (IT language). https://www.asmaraonlus.org
  27. Associazione Italiana Pazienti BPCO (IT language). https://www.pazientibpco.it
  28. CFS/ME Sindrome da stanchezza Cronica (IT language). https://www.cfsme.it
  29. CFU Italia Comitato Fibromialgici Uniti (IT language). https://www.cfuitalia.it
  30. F.A.I.S. - Federazione Associazioni Incontinenti e Stomizzati ONLUS (IT language). https://www.faisitalia.it/index.php/en
  31. FAND Associazione Italiana Diabetici (IT language). https://www.fand.it
  32. Forum Nazionale delle associazioni di nefropatici trapiantati d’organi e volontariato (IT language). http://www.forumtrapiantitalia.it
  33. GAT-GRUPPO AIUTO TIROIDE (IT language). https://www.gruppoaiutotiroide.org
  34. LIS - Lega Italiana Sclerosi Sistemica (IT language). https://sclerosistemica.info
  35. Parent Project - Distrofia di Duchenne e Becker (IT language). https://parentproject.it
  36. PARKINSON ITALIA (IT language). https://www.parkinson-italia.it
  37. Respiriamo Insieme (IT language). https://www.respiriamoinsieme.org
  38. SIMBA – Associazione Italiana sindrome, malattia di Behc¸et e Behc¸et like (IT language). https://www.behcet.it
  39. SOS Alzheimer (IT language). http://www.sosalzheimer.it
  40. UILDM - Unione Italiana Lotta alla Distrofia Muscolare (IT language). https://www.uildm.org
  41. Cittadinanzattiva CnAMC: XVII National Report on Chronic Policies “The Region you go to, the care you find (maybe)”, 2019 (IT language). https://www.quotidianosanita.it/allegati/allegato7647245.pdf
  42. Cittadinanzattiva’s information campaign “Let’s get back to taking care of ourselves” (IT language). http://www.torniamoacurarci.it
  43. Active Citizenship Network, video message and 10 concrete proposals to the institutions called upon to discuss how to prevent future global health crises. https://www.activecitizenship.net
  44. Active Citizenship Network, European Charter of Patients’ Rights. https://www.activecitizenship.net
  45. Rome Declaration, Global Health Summit 2021. https://global-health-summit.europa.eu/rome-declaration_en
  46. Active Citizenship Network’s video message for the 2021 Global Health Summit. https://www.youtube.com/watch?v=ALG7DAzwieY
  47. Active Citizenship Network’s Manifesto with 10 Concrete recommendations towards a European Health Union. https://www.activecitizenship.net
  48. Conference on the Future of Europe. https://futureu.europa.eu/?locale=en
  49. Some examples of the previous editions of the European Patients’ Rights Day recognized and endorsed by the EU Commission: 2013, 2014, 2017, 2018, 2019, 2020, 2021.
  50. Active Citizenship Network “International & national celebrations for the European Patients’ Rights Day”. http://www.activecitizenship.net
  51. Active Citizenship Network: XVI European Patients' Rights Day, 20-21 April 2022. http://www.activecitizenship.net