The agreement was signed to compensate patients with cystic fibrosis after innovative treatments. According to the Panhellenic Cystic Fibrosis Association, the agreement concerns a revolutionary treatment that “freezes” the disease.

“The concerted pressure and effort of patients with a unified voice through the Panhellenic Cystic Fibrosis Association has paid off! The signing of the agreement concludes the negotiation procedures between the state and the pharmaceutical company 2 years after the successful start of early access to a revolutionary treatment that “freezes” the disease in Greece,” the association notes, adding that the agreement concerns about 500 Greek patients with cystic fibrosis.

What does the agreement provide?

Kaftrio/Kalydeco therapy (ivacaftor/tezacaftor/elexaftor in combination with ivacaftor) will be reimbursed for eligible CF patients 12 years of age or older who have at least one F508del mutation, and Orkambi therapy (lumacaftor/ivacaftor) for eligible criteria for patients older than 2 years who have two copies of F508del in the CFTR gene.

Association President Anna Spinow commented: “When the American Drug Organization approved Kaftrio’s revolutionary freezing treatment in October 2019 with impressive results, our Association immediately launched a coordinated effort to bring the revolutionary treatment to Greece as soon as possible. Our organized pressure and interventions, combined with our collaboration with the former Minister of Health, Mr. Kikilia Vassilis, paid off, and therefore, in the spring of 2020, early access to innovative treatment was announced in our country.

Through the Early Access Program, we were able to rescue 30 Greek patients with cystic fibrosis who were critically ill and at risk of death. Then, in the subsequent period, after the marketing approval of the treatment by the European Medicines Agency (EMA) in August 2020, all eligible patients with cystic fibrosis in our country gradually gained access to treatment. Thanks to our continuous action in cooperation with the competent authorities, the Minister of Health, Mr. Athanasios Pleuris and the pharmaceutical company Vertex Pharmaceuticals, last year we managed to eliminate any delays in the implementation of prescriptions for innovative treatments introduced in previous years. , which were imported via IFET. Today, our patients receive treatment in a smooth flow without interruption.”

The General Secretary of the Panhellenic Association of Cystic Fibrosis Patients, Konstantina Yannakis, thanked those who contributed to this effort: “Signing an agreement for the reimbursement of the costs of innovative treatment with CFTR modulators in Greece, which has been achieved in large countries such as Australia, Canada, Germany. , Austria, France, UK, New Zealand, etc., is a testament to what patients can achieve with effective and organized advocacy! “Therapy with CFTR modulators not only improves the symptoms of the disease in our patients, but also targets the causes of cystic fibrosis, slowing the progression of the disease and significantly improving the respiratory function and overall health of our patients,” he said.

The completion of the National Cystic Fibrosis Registry is also considered a great success., which is the first priority patient registry in Greece. National Registry K.I. this was a necessary condition for completing the negotiations on compensation for treatment, and it is interconnected with the European CT registry with the aim of uniting our country with the European community.