“The changing face of Cystic Fibrosis”
Webinar of Hellenic Cystic Fibrosis Association
European CF Awareness Week (21-27th November)
The changing face of the most common genetic disease, Cystic Fibrosis, which is gradually turning from fatal to a manageable chronic condition, was presented during the online conference organized by the Hellenic Cystic Fibrosis Association on Sunday, 20th November 2022. The conference “The Changing Face of Cystic Fibrosis” was organized during the European Cystic Fibrosis Awareness Week (November 21-27/2022) under the auspices of Cystic Fibrosis Europe (CF Europe), European Lung Foundation, Hellenic Pulmonary Society, Hellenic Pediatric Pulmonary Society. More than 4300 people from Greece and other countries watched the online event and they had the opportunity to pose their questions to the experts during the conference.
You can watch the Conference at event.cysticfibrosis.gr
The aim was to inform CF patients and their families about the recent developments concerning the disease; to promote increased awareness of the disease in the wide pubic; to raise public awareness on prevention of the disease and early diagnosis, considering that Cystic Fibrosis is the most common genetic disease with more than 500,000 carriers in Greece – a rate corresponding to 4-5% of the general population – and approximately 800 patients across the country.
“Through a long journey of 40 years in difficult conditions, CF patients and caregivers all over Greece united our voices within the Hellenic Cystic Fibrosis Association, advocating our rights and a better quality of life, managing to change Cystic Fibrosis in Greece. This was made possible thanks to the voluntary group contribution of all members of the Association in continuous cooperation with the State, the authorities and the scientific community. Science is advancing rapidly and in a few years, we expect breakthrough treatments for all CF patients. In memory of the patients we have lost, our Association continues its actions until the moment we all dream of. Until the moment when the therapy that will eradicate the disease will be available to give Unlimited Breath and life to all CF patients”, said Anna Spinou, President Hellenic Cystic Fibrosis Association and Board Member of Rare Diseases Greece.
The event began with the welcome speech of the Greek Minister of Health, Mr. Athanasios Plevris, who mentioned that the State supports and facilitates access to innovative treatments for CF patients by covering the expenditure on medicinesby the system of automatic over-reimbursement (clawback). He also said that the State will strengthen the Greek Lung Transplant Program and the CF Units in Greece. “Prevention and early diagnosis and, above all, access to new medicines are our weapons to win this battle so that the slogan of your campaign “Unlimited Breath” becomes a reality,” he noted characteristically.
In her welcome speech, the President of CF Europe, Mrs. Jacquelien Noordhoek, referred to the different challenges that CF patients face in different countries concerning their access to innovative therapies. “It depends on the place you were born to how soon you get access to innovative medications. We are working on it very hard, supported by all the CF community in Europe. We don’t want to leave anyone behind”, she emphasized. Mrs. Noordhoek congratulated Hellenic Cystic Fibrosis Association for its work, stressing that it’s one of the most well-known CF Associations in Greece and beyond. “Your strength is that you cooperate with the authorities, the scientific community, the medical representatives, and you know the patients’ voice. And that combination I believe is the only way to go. I hope we learn from each other because only together we can move some mountains”, she said.
The event was also greeted by Mr. Stylianos Loukidis, President of the Hellenic Thoracic Society and Professor of Pulmonology at the National and Kapodistrian University of Athens. Mr. Loukidis announced that the Hellenic Thoracic Society will continue to grant a scholarship for a pulmonologist in the CF Unit at Sismanoglio Hospital for a fifth consecutive year, and from 2023 it will award a new corresponding scholarship to the 2nd CF Unit in Papanikolaou Hospital in Thessaloniki.
In his greeting, Mr. Emmanuel Paraskakis, President of the Hellenic Pediatric Pulmonary Society and Associate Professor of Paediatrics, Head of the Paediatric Respiratory Unit of the University of Crete, referred to the life expectancy increase of CF patients and the struggle of pediatricians and pediatric pulmonologists, so that CF will turn from a pediatric into an adult disease.
Specialized doctors from Greece’s largest hospitals and specialized CF Units, as well as health scientists, participated in the Conference, and they presented the changing characteristics of Cystic Fibrosis and the recent developments.
– The innovative treatments CFTR Modulators have impressive results for 95% of CF patients in the USA and 75% of CF patients in Greece. The lower percentage in Greece is due to the remarkable molecular heterogeneity of the population in the country.
– Despite the impressive results of CFTR Modulators, patients should continue to have high compliance to other treatments, such as inhaled antibiotics, physiotherapy, exercise, etc.
– Based on research data from abroad, the life expectancy of CF patients has increased by 20 years in the last 20 years. The number of lung transplants has decreased by ¼ over the previous five years. In the last three years, pregnancies, and births of children from CF patients have doubled.
– In the coming years developments are expected with new and more effective CFTR Modulators for all patients. In addition, the first results of gene therapy research are anticipated in the next five years.
– There is still a vital need to increase organ donation in Greece and have an effective Lung Transplant Program for the patients who need lung transplant.
– Tele-physiotherapy in children with Cystic Fibrosis showed excellent results compared to home physiotherapy.
– Appropriate nutrition to deal with complications in the gastrointestinal systemand Cystic Fibrosis Related Diabetes, as well as maintaining the upper respiratory system in good condition, are critical for the health of CF patients.
– The first positive results of thepilot program on Cognitive Behavioral Psychotherapygroups for CF patients and caregivers developed for the first time by the Hellenic Cystic Fibrosis Association, offered voluntarily by Mrs. Stavroula Rakitzi, highlight the need of psychological support from the first stages of the diagnosis.
Hellenic Cystic Fibrosis Association continues its work to:
– support the specialized CF Units for children and adults, considering that the following years about 75% of patients will be adults.
– support the National Lung Transplantation Program and increase organ donation in Greece.
– ensure early and equal access to the innovative treatments.
– support disease prevention and newborn screening.
Speakers of the event were: Argiri Petrocheilou, Pediatrician – Pediatric pulmonologist, CF Unit, Paidon-Agia Sofia Children’s Hospital, Athens, Filia Diamantea, Pulmonologist, Head adults CF Unit, Sismanoglio Hospital, Athens, Elpida Hatziagorou, Associate Professor of Pediatric Pulmonology, Aristotle University of Thessaloniki, Head of CF Unit, “Hippokratio” Children’s Hospital, Thessaloniki, Katerina Manika, Associate Professor of Respiratory Diseases and Tuberculosis, Aristotle University of Thessaloniki, Head of adults CF Unit, “Papanikolaou” Hospital, Thessaloniki, Maria Fotoulaki, Professor of Paediatrics – Paediatric Gastroenterology, Aristotle University of Thessaloniki, Responsible of Pediatric Gastroenterology and Nutrition Department, “Papageorgiou” Hospital, Nikolaos Tsokos, – Diabetologist, PhD National and Kapodistrian University of Athens, Director of Diabetes Clinic, Sismanoglio Hospital, Pavlos Maragkoudakis, Otolaryngologist Surgeon and Professor at the National and Kapodistrian University of Athens, B’ University Clinic of Attikon Hospital, Athens, President of Hellenic Society of Otorhinolaryngology Head & Neck Surgery, Iraklis Tsagkaris, Pulmonologist and Intensivist, Associate Professor at the National and Kapodistrian University of Athens, Head of the 2nd Department of Critical Care Medicine, Attikon University, Athens, Head of Greek Lung Transplant Program, Themistoklis Hamogeorgakis, Director of 2nd Cardiac Surgery Department, Responsible Cardiac surgeon of Lung and Heart Transplantation Department, Onassis Cardiac Surgery Center, Athens, Mixalis Hourdakis, Associate Professor of Basic Medical Nutrition – Hygiene, School of Medicine, Aristotle University of Thessaloniki, Petros Loudos, PM OMT, Physiotherapist, “Sismanoglio” Hospital, Athens, Pavlina Peftoulidou, Physiotherapist, CF Unit, “Hippokratio” Hospital, Thessaloniki, Stavroula Rakitzi, Dr., Dipl.-Psychologist, Clinical Psychologist and cognitive behavioral Psychotherapist, Anna Spinou, President of Hellenic Cystic Fibrosis Association and Board Member of Rare Diseases Greece.
During the Conference, CF patients Despoina Gini, Maria Zoumpou, Petros Chalikias, Stella Georgaki, and caregivers Alexandra Bouzioti and Aristotelis Konstantakopoulos shared their personal experiences of living with Cystic Fibrosis.
Anna Spinou, President, and Konstantina Giannaki, Secretary General of the Hellenic Cystic Fibrosis Association coordinated the event.
Platinum Sponsor: Vertex Pharmaceuticals, Basic supporters: Chiesi Hellas and Gilead, Donor: PARI.