18/2/2022
Meeting with the Deputy Minister of Health Ms. Mina Gaga – priorities in Cystic Fibrosis
The representatives of the Hellenic Cystic Fibrosis Association held a scheduled online meeting with the Deputy Minister of Health Ms. Mina Gaga on Wednesday 16/2/2022, with the participation of the President of the Association Mrs. Anna Spinou, the Vice President Mrs. Irini Katsini, the General Secretary Mrs. Konstantina Giannaki and and the Deputy Member of the Board and former President, Mr. Giannis Spinos. The meeting discussed the 3 priority areas for Cystic Fibrosis: access to innovative treatments, strengthening of Cystic Fibrosis Units and lung transplants.
The President of the Association, Mrs. Anna Spinou, stated the following:
“As part of our ongoing partnership with the Department of Health, we met with Ms Gaga to discuss the priorities for Cystic Fibrosis that contribute to improving service delivery, quality and the lives of our patients. Access to innovative treatments was the 1st priority axis we raised with the Minister. With the revolutionary treatment that ‘freezes’ the disease, Cystic Fibrosis patients have been living a ‘miracle’ in recent times, with our breath getting stronger and stronger. Thanks to the new treatment, our hospital stays have been greatly reduced, we are able to help ourselves and perform daily activities without the need for an oxygen device, and our daily lives have been greatly improved. The Minister is particularly aware of Cystic Fibrosis and expressed her enthusiasm for the dramatic impact that new treatments are having on our patients. Indeed, with the recent approval by the European Medicines Agency to extend the administration of the breakthrough treatment to our young patients aged 6-11 years, patients are being given the opportunity to receive the treatment at an early age to prevent the negative progression of the disease as early in their lives as possible. Our main priority at the Hellenic Cystic Fibrosis Association is to ensure our patients’ continued and uninterrupted access to innovative life-changing treatments. Currently over 150 patients are receiving the breakthrough treatment, and we look forward to finalizing the reimbursement agreement between the government and the pharmaceutical company so that all of our eligible patients have access to the treatment that will boost their immune system and give them back their breath.”
“New treatments have contributed to a significant increase in survival, with 50% of Cystic Fibrosis patients worldwide now being adults, as opposed to, for example, in the 1980s when only 30% reached adulthood. In fact, it is estimated that by 2025, 75% of Cystic Fibrosis patients will be adults. This creates a huge pressure to strengthen and adequately staff our country’s adult Cystic Fibrosis Units. In our country there are 2 Adult Units, one is at Sismanoglio where 80% of the country’s patients are monitored and the other is at Papanikolaou, where our patients from Northern Greece are monitored. The 2nd axis of priorities that we have set for Mrs. Gaga is to strengthen the Units with qualified staff in order to adequately cover the needs of our patients.“said the Vice President of the Hellenic Cystic Fibrosis Association, Mrs. Irini Katsini.
According to the General Secretary of the Association, Mrs.Konstantina Giannaki and the Deputy Member of the Board, Mr. Giannis Spinos, the need to strengthen the National Lung Transplantation Program for patients who are not eligible for an innovative treatment due to their mutations and are in end-stage respiratory failure, as well as for our patients who have already been transplanted, is the third priority axis that was put to the Minister by the Association. In particular, the need to increase the efficiency and reliability of the transplant programme and to increase the number of transplants so that patients have a 2nd chance at life was highlighted. At the same time, the representatives pledged to continue efforts to raise awareness of society through the successful campaign of the Association “Breath Unlimited – Be a life Donor”, which managed to triple within two months amid covid-19 the registration of organ donors in the National Transplant Organization’s registry, with the official supporter of the country’s first citizen, the President of the Republic Ms. Sakellaropoulou.
Ms Ganga renewed the appointment with the representatives of the Hellenic Cystic Fibrosis Association, where the progress of the issues discussed will be evaluated.
