Meeting with EOF President on access to new innovative treatments for patients with CF
Dear parents and patients,
On Friday 22/11/2019, during the European Cystic Fibrosis Week, a meeting was held between the representatives of the Hellenic Cystic Fibrosis Association Mr. Dimitris Kontopidis, Ms. Anna Spinou and Mr. Vassilis Palios with the President of the EOF Mr. Dimitris Filippou, the Director of Product Evaluation Ms. Orfanou Maria and Ms. Droushka Sophia, the Director of Control, Production & Marketing of Products Ms. Goura Pantelia and the Director of Public Relations Ms. Katsifi Anna and Ms. Stifalu.
This meeting took place in the context of the organized assertion of the immediate and unhindered access of patients to the innovative treatments CFTR Modulators of the company Vertex in a series of meetings with the competent bodies, the pharmaceutical company and in consultation with associations in Europe.
A few days before, on Tuesday 19/11/2019, a similar meeting of our Association’s representatives with EOPYY and meetings with the Minister of Health had taken place since the summer he took office. At the same time the guest at the Press Conference, Minister of Health Mr. Kikilias Vassilis, made a public call to the pharmaceutical company Vertex to approach the competent authorities (EOF, EOPYY) in order to start the procedures for the introduction of the drugs Orkambi, Kalydeco, Symkevi, Trikafta, which concern our patients through EOPYY, but also to activate early access for the new triple combination “Trikafta” for patients with respiratory function FEV1<40%.
More specifically, the meeting with the EOF discussed the series of procedures to be followed to achieve patient access to all of the company’s drug combinations as well as the new innovative drug combination, which has already been approved by the US Food and Drug Administration (FDA), while an application for approval has already been submitted to the European Medicines Agency (EMA).
The immediate need for immediate access to the new drug “Trikafta” for high-risk patients with a respiratory function FEV1<30% as well as impaired patients with low respiratory function FEV1<40% was highlighted. A possible infection in the above patients, can be fatal and therefore the need to accelerate the procedures and ensure their immediate access both by introducing IFTs and securing an early access program through Vertex was highlighted.
Finally, the approval and the successful negotiation of price and reimbursement through EOPYY of all the necessary innovative treatments (CFTR Modulators) that concern the majority of our patients must be done immediately – without bureaucracy. They are a revolution in the way of treating Cystic Fibrosis by ‘freezing’ the disease and it is important to prevent further destruction of the organs , the burden on the health of each patient and to prevent any loss.
The first positive result of these interventions is the 1st meeting of Vertex with the EOF last Tuesday 26/11/2019.
We look forward to the progress of the steps that must be taken by both parties (pharmaceutical – government) to ensure that our patients have immediate access to these treatments with a focus on the burdened patients. When there is a treatment that “freezes” the disease and we are entitled to it, we do not accept to lose a single patient !