Meeting with the Minister of Health, assessment of progress on C.F. issues

On Thursday 16 July 2020, a scheduled meeting of the representatives of the Hellenic Cystic Fibrosis Association Dimitris Kontopidis (Honorary President) and Anna Spinou (President of the Board) with the Minister of Health Mr. Kikilias took place.

The Honorary President of our Association and patient representative in the working group of the National Registry of C.F., Dimitris Kontopidis, stated the following:

“The purpose of our meeting in the context of our constant cooperation with the Minister of Health, Mr. Kikilias, was to evaluate the progress and plan the next steps to be taken on the issues concerning patients with C.F., which we had defined from our first meeting. Mr. Kikilias has demonstrated in practice his sensitivity to the problems faced by Cystic Fibrosis patients at such a historic moment for our disease, but also his substantial contribution to date to the gradual implementation of the steps to be taken to resolve the issues. Following the success of the launch of the “Trikafta” early access programme for critically ill C.F. patients and the resolution of the bureaucratic difficulties, we are now focusing on the activation and development of the National Cystic Fibrosis Registry. The experience with the National Registry of C.F. can be a catalyst for the establishment of other National Registries for other diseases, where apart from its multiple benefits primarily for patients, in our case it is also a prerequisite for negotiating the reimbursement of the revolutionary treatment of “Kaftrio” (Trikafta) that concerns the majority of C.F. patients in our country.

Finally, in my capacity as the representative of the Hellenic Patients’ Association, I believe that the participation of patients’ representatives in the newly established Quality Assurance Agency for Health Care will have a catalytic effect on the evaluation of hospitals, sharing the responsibility for addressing pathologies and improving services that are of primary interest to the recipient, which is every citizen-patient.”

The following issues were discussed at the meeting:

Early access “Trikafta”
After many delays and constant interventions to resolve them, the first applications have started. Every effort is being made to include all eligible critically ill patients, as we are now counting down to the approval of the drug by the European Medicines Agency (EMA) which is expected in September and will discontinue the early access programme. Also discussed was the issue of the transition of patients who will join from the early access of “Trikafta” to the access of “Kaftrio” after its marketing approval by the EMA.

National Cystic Fibrosis Registry
The National Cystic Fibrosis Registry is now established and is a tool of great importance, primarily for the patient. Its link with the European Cystic Fibrosis Registry is another success of the working group. Both the representatives of the Ministry of Health and EDIKA, as well as the treating physicians with the active and substantial participation of our patients’ representative Dimitris Kontopidis, have contributed decisively to its final form. Now the working group has started to coordinate the actions for the activation of the Registry with the gradual integration of the data of all patients.

Negotiation of the ‘Kaftrio’ (‘Trikafta’) compensation
A key prerequisite for the negotiation of the “Kaftrio” reimbursement is the completion of the National Registry of Cystic Fibrosis Patients. The representatives of the Hellenic Cystic Fibrosis Association are monitoring developments in Europe in order to contribute to the positive outcome of the agreement for our country, which is being negotiated by the Greek Food and Veterinary Organization (EOF) with the pharmaceutical company.

Support for Cystic Fibrosis Units
With the increase in life expectancy of patients, the burden of patient support has shifted to the two adult Cystic Fibrosis units located at Sismanoglio and Papanikolaou. The recruitment of a specialist pulmonologist and his integration into the adult CF units is the main support action expected to be implemented, while the Association is in constant contact with the administrations, attending physicians and staff of the units seeking their smooth operation.

Lung transplants
This is a multifactorial issue that concerns a wide range of patients and the Association is closely monitoring it in cooperation with both the President of the Onassis Hospital, Mr. Boleti, and the EOM.