4/9/2022

“ELF Patient Organisation Networking Day 2022”

Speech by our President Anna Spinou at the annual European Lung Foundation event

The President of the Hellenic Cystic Fibrosis Association, Anna Spinou, spoke at the annual European event of the European Lung Foundation “ELF Patient Networking Day 2022” on August 31st, a few days before the annual scientific conference of the European Respiratory Society (ERS) in Barcelona on September 4-6, presenting to the European Associations the self-management programs that our Association has developed for patients with Cystic Fibrosis in Greece.

The event was attended by over 75 participants from 28 European countries, and the event programme included presentations from researchers, patients and patient associations, as well as interactive polls and discussion groups.

The event started with welcoming remarks by ELF President Kjeld Hansen and ELF Advisory Committee Chair Mikaela Odemyr. The ERS (European Respiratory Society) Presidents Prof. Marc Humbert (France) and Prof. Carlos Robalo Cordeiro (Portugal) then spoke about important successes, including the launch of the International Respiratory Coalition and the Lung Facts website.

In the 1st session, Dr Tanja Effing-Tijdhof (Flinders University and University of Adelaide, Australia) spoke about the importance of disease self-management in patients with chronic respiratory disease, while Ilan Shufer from the Cystic Fibrosis Association of Israel presented the advantages and challenges of patient-led disease self-management. At the end of Session 1 Marian Reilly from Ireland demonstrated Laughter Yoga techniques.

In the 2nd session of the event, representatives of European Respiratory Disease Patient Associations presented their experience and the self-management programs they have developed for their patients in each country. Speakers were Tessa Jelen from the English Asthma Association “Asthma and Lung UK Westminster Support Group”, Luca Roberti from the Italian Obstructive Apnea Association “Italian Sleep Apnea Association”, Anna Spinou and Carlos Pons from the Hellenic Cystic Fibrosis Association and the Respiralia Foundation of Greece and Spain and Armando Ruiz from the Spanish Federation of Allergy and Airways Diseases Patients’ Associations (FENAER).

The President of our Association, Anna Spinou, presented the disease self-management programs developed by our Association in Greece for patients with Cystic Fibrosis, as well as the new needs of patients after the advent of the revolutionary treatment that “freezes” the disease and the coronavirus pandemic. Starting her speech, she referred to the main pillars of care for patients with Cystic Fibrosis, but also to the innovative treatments that have changed the lives of patients. As she mentioned, in the past before the advent of the revolutionary treatment that “freezes” the disease, the Association focused mainly on developing self-management programs and educating our patients in respiratory physical therapy & personalized exercise, which had very positive results in improving the respiratory function of the patients who participated.

Also with the advent of the coronavirus pandemic, the Association took the initiative and has so far donated 300 individual spirometers to patients across the country for self-management of the disease and monitoring their respiratory function remotely from home, protecting them from frequent hospital visits amidst covid-19.

“But despite the advent of the coronavirus pandemic, 2020 was a pivotal year for Cystic Fibrosis patients in Greece!” said our President. “In close collaboration with the Ministry of Health and the pharmaceutical company Vertex, we were able to activate the early access program to Kaftrio for critically ill and end-stage respiratory patients in Greece, ahead of the European Medicines Agency (EMA) marketing approval. Greece was one of the few countries worldwide where we managed to activate the early access program and our Association was awarded for this successful action with the Prix Galien Greece 2021 award.”

This treatment affects 70% of Greek patients with Cystic Fibrosis and from the first days of administration, patients have had dramatic results in their respiratory function and their state of health. Today, all eligible Greek adult patients and children over 12 years of age have access to the treatment, and following the recent approval by the European Medicines Agency (EMA), access is gradually being extended to younger children aged 6-12 years. Two years of access to Kaftrio in Greece have changed the needs of the majority of Cystic Fibrosis patients, changed the frequency and duration of physiotherapy, patients can gain weight more easily, life expectancy is increasing. “Now we can live a more ‘normal’ life. We have the opportunity to study, work, get married and why not?  Have children. But this big change we are experiencing in our lives creates a lot of emotions. Suddenly becoming healthier after so many years of slowly dying affects our mental health. Patients taking Kaftrio feel anxiety and uncertainty about their new life. They have to relearn who they are and how to live. And unfortunately, things are even more difficult for the 30% of our patients who are not eligible for treatment because of their rare mutations, and for those whose treatment does not have the effect they expected. These patients feel more stress and anxiety…” said Anna Spinou.

Listening to the new needs in the patient community, the Association developed for the first time a pilot mental health self-management program for adult patients and their caregivers, offering participants free group cognitive behavioral psychotherapy for 3 months, with the aim of reducing anxiety and depressive mood, enhancing assertive behavior, and restarting life. The program is a voluntary offer of Dr. Dipl.-Psych. Stavroula Rakitzi and the results of the first pilot studies were positive, showing that group cognitive behavioral psychotherapy is an important part of the health and mental health of Cystic Fibrosis patients and their caregivers. Concluding her presentation, our President thanked the Board of the Association for their dedication and hard work, and then gave the floor to the Director of the Spanish Cystic Fibrosis Association Respiralia Foundation, Carlos Pons, who spoke about the self-management programmes that have been developed for Spanish patients.

This was followed by the 3rd session of the event with discussions between the speakers and the participants, as well as the exchange of experiences, views and good practices between European patient associations, and at the end of the event the awarding of the ELF 2022 prize to Rosamund Adoo-Kissi-Debrah for her actions and dedication to improving air quality for all, was announced.

You can read more about the event and the detailed press release of the European Lung Foundation on the ELF website here, while below you can watch the recorded videos of all the speeches.

-watch the video of the 1st session

-watch the video of the 2nd session with the speech of our President Anna Spinou at 24:00”

-see the video of the 3rd section

-see the video of the ELF 2022 Award