European Cystic Fibrosis Awareness Week 2016
New personalised treatments with difficulties in access
European Cystic Fibrosis Week this year finds us with new personalised treatments in Cystic Fibrosis, targeting the most common mutation (homozygotes with DF508). Now, they are available and significantly improve patients’ quality of life. Unfortunately, however, in our country, after a great struggle, only in the last 2 months have patients had access to these treatments, at a rate of 2 out of 3. Indeed, due to the discontinuous flow due to lack of planning and untimely orders, most of them are forced to discontinue their treatment, with a serious burden on their health.
Despite all this, according to the latest figures from the European registry, we are pleased to note that the population of children is now equal to that of adults. This means that life expectancy is improving and the burden of hospitalisation and patient care is shifting to adult units. There is therefore a great need to staff and support adult centres and to develop the different specialities involved in the treatment of Cystic Fibrosis as a multisystemic disease.
Meeting with the Minister of Health
On Friday 18/11, on the occasion of the European Cystic Fibrosis Week, the Minister of Health Mr. Xanthos received for the first time the President and the Secretary of the Hellenic Cystic Fibrosis Association Dimitris Kontopidis and Anna Spinou, effectively opening the dialogue to find realistic solutions and agreeing on a timetable of interventions to address the basic needs of Cystic Fibrosis patients.
The President Mr. D. Kontopidis and the Deputy Secretary Ms. A. Spinou of the Hellenic Cystic Fibrosis Association together with the Minister of Health Mr. Xantos.
Annual Workshop “ask the experts”
With this in mind, the series of annual “ask the experts” workshops was launched. With the participation of all the centers involved and the scientific community of Cystic Fibrosis in our country, each year different thematic sections are formed.This year’s special thematic section included presentations on nutrition, diabetes, gastrointestinal & upper respiratory, while an innovative application for the management of the disease via mobile phone, MyCyFAPP, was presented.
The greetings were attended by the Governor of Sismanoglio Mr. Koutalas and the Deputy Governor of the Children’s Hospital “Aghia Sophia”, Mrs. Zoirou, with their commitment to the continuous support of patients with Cystic Fibrosis. It is in these hospitals where the largest adult and children’s centres respectively in our country are housed. It was also a touching moment to say goodbye to the Director of the Adult CF Unit, Mr. Inglesos, due to retirement, after 23 years of decisive contribution to the cystic fibrosis community. The Workshop was held on Saturday 19 November with interactive livestreamed questions, kicking off the European Week starting Monday 21-27 November.
Mr. Igglezos, Director of the NHS, Pulmonologist, in a touching farewell moment organized by the members of the Hellenic Cystic Fibrosis Association.
In a round table organized during the Workshop, the development of CF units was discussed. From the left, doctors Mrs. A. A. Petrochilou, E. Hatziagorou, F. Diamantea, I. Chanakas
The President of the Hellenic Cystic Fibrosis Association, D. Kontopidis, opens the Cystic Fibrosis Workshop, which also marks the beginning of the European Cystic Fibrosis Week.
The Director of the Sismanoglio Hospital, Mr. Koutalas, was present to address the conference and support the event.
Mrs. Zoirou, Deputy Director of the Aghia Sophia Children’s Hospital, attended the conference to address the participants.
The pulmonologist Mrs Filia Diamantea, Director of the Adult Cystic Fibrosis Unit of the Sismanoglio Hospital analyses the importance of regular monitoring of the patient.
Ms Elpida Chatziagorou, Assistant Professor of Pediatric Pediatric Pulmonology at the Aristotle University of Thessaloniki (Hippocrates General Hospital of Thessaloniki) will inform the participants about the newest inhaled antibiotics and the results of the Hellenic and European registry.
At the round table on nutrition, diabetes and gastrointestinal complications in Cystic Fibrosis, doctors and nutritionists took questions from patients and health scientists.
The innovative MyCyFAPP, a tool for managing the disease in the hands of the patient, was presented at the Cystic Fibrosis Workshop.
