Worldwide Cystic Fibrosis Day 2014

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Worldwide Cystic Fibrosis Day 2014 HCFA TEAM March 24, 2015

Worldwide Cystic Fibrosis Day 2014

8 September 2014
World Cystic Fibrosis Day

1st Cystic Fibrosis Cycling Tour

The 1st cycling tour in Greece for the World Cystic Fibrosis Day took place in order to inform the public about Cystic Fibrosis, the most common hereditary disease in our country. The main objective was to inform young couples about the necessary prenatal check-ups in order to avoid future births of children with Cystic Fibrosis as it is estimated that one child is born per week, which is about 50 children per year.

The participation of volunteers at the stands set up in Syntagma Square, Kerameikos Square and Aristotelous Square in Thessaloniki was impressive. In addition to the volunteers, our patients themselves, some of whom excel in sports, live in the province and have undergone transplants, participated in the cycling tour. Also, for others, their intravenous treatment did not stand in the way and they honoured us with their presence, demonstrating in practice the power hidden in our motto ” every breath a step closer to our dreams”!

Thank you all very much!

In his statements, the President of the Hellenic C.F. Association, Giannis Spinos said the following:

The carriers and patients of Cystic Fibrosis in Greece

4-5% of the general population, i.e. 1 in 20 to 25 people is considered to be a carrier of the pathological gene, i.e. about 500,000 Greek carriers. In our country it is estimated that there are around 800 patients but unfortunately this number is not exact as there is no official registration. Another goal of our Association is to participate in the next year in the European registration of the 2 centers of Athens (children in “Agia Sophia” and adults in “Sismanoglio”) despite the unsuccessful attempts of the past, while so far only 103 patients from the centers of Northern Greece are registered in the European registry (registration). A catalytic role in the positive developments of these processes was played by the visit last June of the President of the European Cystic Fibrosis Scientific Community (ECFS), Mrs. Kris De Boeck, and the Head of the European registration of patients, Mrs. Jacqui Van Rens, to the Hellenic Congress of Cystic Fibrosis in Thessaloniki.

The situation and the problems faced by C.F. patients in our country.

The lack of information, organisation and specialised centres is an important factor in the lower average survival rate of Cystic Fibrosis patients in our country, which is estimated to be perhaps ten years shorter than in other European countries. There is also a great shortage of specialised pulmonologists for adult patients, while there is no organised unit staffed by specialised personnel of different medical and health professionals (MDT) such as gastroenterologists, psychologists, ENT, physiotherapists and nursing staff, as it is a multisystemic disease affecting many organs.

The Adult Unit of the “Sismanoglio” is essentially the first Unit to be organized, following the handover of an entire ward by the former Administrator Mrs. The organization of the pre-transplantation procedures in the centre of Austria with a permanent secretary and the connection that we made last year with the specialised centre of C.F. of Southampton, we believe that it will contribute significantly in this direction, i.e. the improvement of the services provided by this Unit. Unfortunately, however, following the sudden death of the specialist pulmonologist Mrs. Kechagia shortly before she took up her duties in the Adult Unit, combined with the imminent retirement of the only specialist Director, Mr. Igglezos, makes the situation particularly worrying as the Unit will be left without a specialist pulmonologist!

In “Agia Sophia” the Juvenile Department after the transfer of 3 permanent specialized pediatricians to the Department last year, the situation has improved a lot while the cooperation with the university clinic helps and we believe that soon there will be positive results in the European registration and in permanent single wards exclusively for C.F. after the continuous support and cooperation of the Administration. The new clinic with specialized pediatricians operating in “Attikon” is certainly a solution to decongest the congested metropolitan center of “Agia Sophia”.

In the hospitals of Northern Greece where patients with C.I. are treated there are many years of infrastructure and specialized doctors, with presence in the European registry, while in “Hippokratio” there is also a program of residential care and physiotherapy. However, until today they operate with personal efforts of doctors and have not been officially institutionalized although last summer after our actions they were recognized by the KESY and the former Minister of Health committed to their full institutionalization.

The main problem in terms of patient care is the establishment of European standards of hospital care where we are waiting for the decision of the KESY to be ratified by the Ministry of Health also since last summer.

In his statements the Vice President and responsible for the organization, Dimitris Kontopidis said the following:

The role of the state

Dimitris Dontodipidis, Director of the State Council, said: “One of the roles of the state is prevention. The basic solution of multiple births can be avoided with a financial program of prenatal screening of high-risk individuals with the possibility of almost definitive elimination of the disease after some years, saving huge costs that the state currently has.

The adoption of the updated standards of the decision of the KESY (No. 2 of the 241st Plenum / 10.07.2013) and the recognition of the Units of Northern Greece also of the decision of the KESY (No. 2 of the 243rd Plenum / 07.11.2013) are pending of the previous Minister of Health and we hope for their institutionalization by the current Minister of Health Mr. Voridis as it is a simple bureaucratic process.

The new recruitment of a specialized doctor in the Adult Unit of the “Sismanoglio” after the sudden death of the pulmonologist who was going to strengthen the Unit is an immediate need as the lives of patients whose health is threatened.

Raising awareness in the society about organ donation and resolving the issue of the inability of transplantation in our country with huge financial costs and delay in waiting lists in countries where lung transplants are performed.

Finally, the provision of the necessary high-cost preparations with zero participation, especially with the expectation of drug combinations for certain mutations that target the cause of the disease through the IFET in the coming year. At the same time, the information of the disability committees of the KEPAs regarding the disease and the provision of relevant benefits such as air therapy is considered necessary in the economically difficult circumstances that the country is going through,





(Σύλλογος Γονέων και Κηδεμόνων Β. Ελλάδος)



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