The representatives of the Hellenic Cystic Fibrosis Association met with the Minister of Health Mr. Kikilias today 29/8/2019, with the participation of the Honorary President Dimitris Kontopidis, the President Anna Spinou, the General Secretary Vassilis Palios and the former President and deputy member Giannis Spinos.
”Mr. Kikilias ‘won’ us with his reflexes as for us time is precious: a ‘life changing’ innovative treatment cannot be stuck in bureaucracy and wait. Its immediate evaluation and approval is a matter of life and death for us. It is up to the Minister not to lose other patients: the 30 of us who are in low respiratory function (<40%FEV1) and especially the 14 of us who are the high-risk group (<30%FEV1), with a life expectancy of 2 years (!), according to the European registry data.
Our first priority, is the timely access to the new combinations of innovative therapies (CFTR – modifiers) targeting the causes of the disease, through the initiation of their negotiation and reimbursement with the competent bodies. Early and life-saving access for our patients through ‘early access’, ‘locked costs’ by registering our patients in the EOPYY Registry and ensuring the lowest possible price in Europe -and- for the next combinations of corresponding drugs through ‘portfolio agreement’, are the ‘key points’ that can make what we have been dreaming of since the day we were born a reality…” was the first item on the agenda, raised to the Minister of Health by the Honorary President of the Hellenic Cystic Fibrosis Association (HCFA) and awarded Patient Advocate 2019 by the European Cystic Fibrosis Federation (ECFS) Dimitris Kontopidis, and continued with the issue of lung transplants:
”…After the abrupt termination of our cooperation with the Austrian transplant centre, where we had managed to transplant 5 patients per m.o. each year, we are now effectively in the air. Lung transplants are one of the most ‘hard-to-find organs’ and in a country that ranks last in organ donation, systematic work needs to be done. The immediate priority must be to make use of the huge investment of the Onassis Foundation (with the expansion of the Onassis Hospital), to support the National Transplantation Organisation (NTO) and to target the causes of the problem starting in the Intensive Care Units (ICUs), otherwise we risk having waiting lists with no impact, with fatal consequences for our patients.
The strengthening and support of the Cystic Fibrosis Units in Athens and Thessaloniki, with emphasis on adults, is the 3rd axis of priorities set to the partners of the Minister of Health by Anna Spinou, Vassilis Palios and Giannis Spinos.
”The increase in life expectancy of patients with increasing access to innovative therapies has resulted in the overloading of adult C.F. units making it impossible to adequately support patients. The recruitment of new specialist pulmonologists, the integrated support of all the health scientists involved ”multidisciplinary team” (nurses, physiotherapists, etc.) with a redefinition of the model of support for patients with Cystic Fibrosis as it is now shaped by modern challenges, is our long-term plan and will require our continued collaboration with the Ministry of Health and every relevant body.
The priorities of Cystic Fibrosis patients are now known to the new Leadership of the Ministry of Health and relevant agencies and we will seek to successfully pursue them through our close collaboration.
Finally, the resolution of the horizontal issues that concern both our patients and all chronic sufferers will be resolved through our participation in the newly established ”Association of Patients of Greece”.