On 17 July 2024, a meeting on Cystic Fibrosis was held with Minister of Health, Mr. Adonis Georgiades. The President of the Panhellenic Cystic Fibrosis Association, Mrs. Anna Spinou, and the General Secretary, Mrs. Konstantina Giannaki, participated on behalf of the patients. From the side of doctors, the following participated. President of the Hellenic Pulmonary Society (HPS), Mr. Stylianos Loukidis, the Board Member, Mr. Charalambos Moschos, and the Head of the Cystic Fibrosis Centre for adults in Sismanoglio, Mrs. Filia Diamantea.
Mr. Georgiades warmly welcomed the attendees and enthusiastically received the first interactive children’s book on Cystic Fibrosis, “Secret Mission: C.I.”, expressing admiration and warmly congratulating the patient representatives for this important initiative of the Association.
The meeting discussed critical issues for Cystic Fibrosis patients, focusing on the need to support understaffed adult Cystic Fibrosis Centres. The Minister said that he would continue to support and strengthen the centres with medical staff, with the announcement of an additional organic Cystic Fibrosis pulmonologist post at the C.I. Centre at the Sismanoglio, renewing the Ministry’s commitment to meet the needs of patients.
The President of the Association, Anna Spinou, said:
“Since his previous term in 2013 as Minister of Health, Mr Georgiades has demonstrated his sensitivity to our problems. In 2013, at a difficult time for the disease, when patients were losing their lives at the age of 20-25, he was instrumental in setting up the first Adult Cystic Fibrosis Unit at Sismanoglio, with the help of the then Director, Olga Economou. The Ministry of Health’s actions to protect Cystic Fibrosis patients continued under the next Ministers, Mr. Kikilias and Mr. Plevris, with vital successes such as the start of access to the revolutionary treatment that “freezes” the disease, the creation of the National Cystic Fibrosis Registry, the launch of the national lung transplant program and the signing of a reimbursement agreement for CFTR Modulators treatments.”
He went on to say: “Our priorities are access to medicine, lung transplants and Cystic Fibrosis Centres. We have largely achieved the first two goals and are now focusing on strengthening the C.I. Centres. Despite the improvement in our health with new drugs, the disease is not being eradicated. We continue to need ongoing monitoring and care in specialist Centres by disease-specialist and experienced pulmonologists to deal with flare-ups and the new challenges that come with increasing our life expectancy. A few decades ago, few patients managed to survive into adulthood. But in the coming years it is estimated that 75% of all Cystic Fibrosis patients will be adults. This increases the need and pressure to strengthen adult CF centres. An important supporter of our efforts is the Hellenic Pulmonary Society. We would like to thank the President of the EPE, Mr. Loukidis, for his sensitivity to the issues of Cystic Fibrosis patients and his important contribution.”
The General Secretary of the Association, Konstantina Giannaki, added:
“There are two adult Cystic Fibrosis Centres in Greece. The largest is in Athens at the Sismanoglio hospital with over 350 patients, while the second is in Thessaloniki at the Papanikolaou hospital with about 70 patients from Northern Greece. At the same time, a total of 19 patients are monitored in local clinics in the hospitals of Larissa and Heraklion Crete, in collaboration with the two major centres. In the two large Centres there are problems of lack of space and understaffing of medical staff, with a focus on Sismanoglio, where there is only one organic position of a pulmonologist for Cystic Fibrosis. A significant relief to our Centres is provided by the provision of a fellowship of a pulmonologist from the Hellenic Pulmonological Society. But the fellowship is a training position and cannot provide clinical work and care to our patients. This is why the two large adult centres need support in terms of staff and space.”
The meeting with the Minister of Health, Adonis Georgiades, was particularly important for patients with Cystic Fibrosis. With the support of the Ministry of Health and the Hellenic Respiratory Society, the Association continues its efforts to strengthen and develop the adult centres in our country, in order to ensure that patients with Cystic Fibrosis can live a quality and safe life. At the same time, it is committed to continue the fight for a better tomorrow with “Breathless Breath” for Cystic Fibrosis patients in Greece.
