The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union

5th May 2021, from 10:00 to 12:00 CEST
Digital Conference


The health challenges faced by non-covid patients

The 15th European Patients’ Rights Day (EPRD) event was celebrated with a two-days webinar on 5 and 6 May 2021 by Active Citizenship Network (ACN) with its conventional format of a large multi-stakeholder conference focusing on the value of citizen participation and a multi-sectoral approach to acting on current and potential cross-border health threats.

The theme of the event for both days was, “The role of civic society and Patients Advocacy Groups for more resilient Health Care Systems. Lessons learned toward a European Health Union”. 

The moderator of the conference, Brian Maguire from EURACTIV, welcomed and introduced the conference and thanked all panellists and organizers for participating in the event. Also, he thanked listeners and the audience.

10:00 – 10:30 Opening remarks & keynote speeches
The first speaker, Mariano Votta, responsible for EU Affairs at the Cittadinanzattiva of Active Citizenship Network, said that Cittadinanazattiva has been organizing this event since 2007 for the health care system and patient’s rights. He shared his first memory that how he heard the first death in Italy of COVID-19 and agreed that we all have been affected in many ways by the covid pandemic since last year and continue going on. Although, he thinks that our scientific progress, vaccine inventions, actors and health care workers who are fighting the pandemic are a positive sign for all of us. But we are still working on civic data and the effects and consequences of COVID-19. According to him the non-communicable disease and patients are more affected by the covid virus. At the same time, civic organizations have been working and putting valuable inputs to fight this pandemic in Italy. These organizations are active in advocacy too for cancer and kind of deadly disease and the various vulnerable people. They are helping to make much resilience to our health system. This is a sign of importance for the civic organization for this pandemic, especially in health sectors. So, it is important to strengthen and support those organizations. He further said, we should learn from this pandemic to fight better with future pandemics. Also, he mentioned a general discussion of health issues in Italy and the European Health Union to strengthen European Political Framework. In the end, he indicated the importance and need of precautions in general for this pandemic. 

The next speaker was Brando Benifei, a member of the European Parliament (MEP) from the Social Democrats Group. He appreciated this annual event and its importance, especially in this phase of a pandemic. He mentioned his support for health issues as an MEP and indicated the situation of health and economy in Europe. European citizens are more aware and active in health and related issues according to him. The right to health and the right to update for everyone must be strengthened in Europe. Also, he mentioned various EU health budgets and regulations, which are helpful to protect communicable and non-communicable diseases. For him, sufficient data on health is essential for any future health plans. He also mentioned the demography and ageing populations of Europe in long run. In the end, he indicated the importance of policymakers in Europe and member states. 

Pierre Delsaux, Deputy Director-General for Health at Directorate-General for Health and Food Safety (SANTE) at the European Commission, talked about investments in health sectors that matters. The second message from him was ‘more cooperation at EU level, that we learnt from this pandemic and that is fundamental for EU and health issues. The last message was more involvement of digital sectors in the health systems of the EU. He requested that we should not ignore other diseases in this pandemic like mental diseases. He talked about the pharmaceutical strategy that ‘we all should get medicines on time’ at the EU level. Artificial intelligence is very essential for health sectors and data protection. In the end, he said that we can succeed only after enough funding in the EU on healthcare. 

10:30 – 11:05 Concrete experiences across Europe
The first speaker of this session, Kathi Apostolidis, President of the Hellenic Cancer Federation (ELLOK) and Board Member of the European Cancer Patient Coalition (ECPC), explained how this pandemic has affected cancer patients and related sectors. The diagnosis was getting tough and online working was not that familiar before the pandemic. Fear and doubts were common for the cancer health workers. For patients, it was not possible to travel from small villages and small cities towards metro cities where enough cancer equipment was available. Although, cancer health workers worked hard to learn new skills and cooperated with other countries and their specialists to solve the issues and to continue cancer treatment in this pandemic. 

The next panelist was Alina Constantin, Patients council and International coordinator of the Ligue contre l'obésité in France. She talked about her organization that works for obesity. The organization was defending patients right during the pandemic. Because obese people are more vulnerable. Although obesity was still not a disease in France. There was a procedure for people with obesity to work from home, but it was annulled by France government, that was strongly opposed by her organization. And they were succeeded to bend the government that announced a new degree on the obese people that they can work from home in certain situations. Another victory for the organization was to make a schedule of vaccination for people with obesity. 

Stefania Vallone, member of the European Program for Routine testing of Patients with Advanced lung cancer (EPROPA) and board member of the Women Against Lung Cancer in Europe (WALCE) Onlus, briefed about her organization. The WALCE organization is based in Italy and mainly works for lung cancer. EPROPA was created by the organization to connect other regions in Europe for lung cancer issues to fasten molecular testing and clinical trials. EPROPA has opened molecular and another testing for Europe. But the high cost of this testing is a big issue and that is why fewer people are getting benefits of these services. That affects the rights of people and the rights of treatment. 

Ana Castellanos, Responsable de Proyectos at Plataforma de Organizaciones de Pacientes (Spain), talked a little bit about her Spanish umbrella organization. The organization works to raise patients’ rights and voice. Emotional impacts on people after the pandemic was another issue of consideration for the organization. Legal advice, home delivery of medicines and work from the home facility for patients from the organization were other effective services and inputs. The organization succeeded in the inclusion of non-chronic diseases with covid patients’ level of care and have been trying to fight more for patients’ rights and treatment of other diseases.

11:05 – 11:55 Roundtable discussion
The ‘round table’ discussion got started with Alex Filicevas President of All. Can International and Executive Director at the World Bladder Cancer Patient Coalition. He talked about the issues and problems of cancer patients that are getting problematic in this pandemic. He saluted to various patients’ organizations who are doing great jobs in this period of need.

Daiva Brogienė, Vice President and Rapporteur on Patient Safety at Standing Committee of European Doctors (CPME), talked about cardiovascular patients and their rights in the covid period. Because the availability of health care services has been changed after this pandemic. According to her cardiovascular patients should be treated in the emergency health care system even in this corona pandemic and emergency. 

Lobna Salem, Head of Medical Affairs, Developed Markets & JANZ at Viatris, explained the work of her Company to strengthen collaborations between the public and private sectors. She indicated NCG patients and how much they are getting effect by covid-19. She mentioned how digital tools are valuable in this pandemic.

Erick Tyssier, Senior Director at Head of Government Affairs at Teva Europe, expressed three points. First that the real heroes in this pandemic are doctors, nurses, medical staffs, health workers, health technicians and medical community. Second, we should treat at the same level both covid and non-covid patients. Third, we must be serious for medical and health care systems for future pandemics. 

Sebastian Arias Zuluaga, Global Access Policy Leader from Oncology at F. Hoffmann-La Roche LTD, quoted most of the comments by earlier speakers in terms of policy designing, framework and effects of policies in this pandemic period and for the rights of patients in general. 

11:55 – 12:00 Final remarks
The moderator, after thanking everyone for participating in the first day of the Conference, gave the floor to Antonio Gaudioso, a member of the Italian Scientific Committee for the surveillance of the Covid-19 vaccine and President of Cittadinanzattiva, for the final remarks. Antonio thanked all panellists and all participants of the event. He mentioned that we all are talking about common problems, issues and goals and we are talking about common objectives to learn and make them better in the future. He shared common fears and positivity at various levels to handle diagnostic, screening, and pandemic situations. He thinks concrete involvement and accountability is essential for the future generation. Strong cooperation among civic bodies and public and private institutions are strongly needed to fight for health issues and patients’ rights to build a sustainable European Framework.

This document has been drafted by Ashique Ali, a volunteer of ACN.

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