8 September, World Cystic Fibrosis Day
President Anna Spinou speaks to the journal “Peri Ygeias”
“A defining year for Cystic Fibrosis patients”
The following is an excerpt from President Anna Spinou’s article in the September issue of “Peri Ygeias” to Martha Fragaki on the occasion of the celebration of World Cystic Fibrosis Day.
“This year has been crucial for Cystic Fibrosis patients in our country. With the advent of covid-19 in Greece, our community felt great fear, as the first organ to be affected is the lungs. Despite the initial difficulties we faced in accessing hospitals and health facilities, our patients adapted relatively quickly to the new challenges of the pandemic. The experience of our patients in adhering to protective measures, telemedicine, intangible prescribing, and prioritisation in our vaccination, as Cystic Fibrosis was in the first group of diseases to be vaccinated from the very beginning, played a catalytic role. Also, through the initiative of our Association, we have so far donated 200 individual spirometers to our patients all over Greece, so that they can do their own spirometry at home, avoiding a visit to the hospital.
Since the beginning of the pandemic, the State and the Ministry of Health have shown immediate reflexes to protect patients with Cystic Fibrosis. With the decisive contribution of the former Minister of Health, Mr. Kikilias, and in cooperation with the President of the Greek Food and Veterinary Organization, Mr. Philippou, and the competent bodies, we managed to bring to Greece through early access the revolutionary life-saving treatment Kaftrio (known as Trikafta in America), which addresses 90% of patients worldwide, and to rescue our critically ill patients with end-stage respiratory failure. I was among these patients and the experience I have to report is that from the very second day of treatment I started to breathe freely without the oxygen device and gradually regained my functionality and the ability to help myself, which I had lost over the last few years.
Currently over 80 patients are receiving the treatment, and the goal is to complete the reimbursement negotiation between the government and the pharmaceutical company to ensure access for all eligible Cystic Fibrosis patients in our country.
Our struggle to launch a revolutionary treatment in Greece and save our patients has been recognized at home and abroad. In addition to the honorary award of our Association at the pharmaceutical “Nobel” Prix Galien Greece 2021 with the “Patient Initiative Award” for the most effective negotiation with stakeholders, our Honorary President, Dimitris Kontopidis, received from the European Lung Foundation the honorary “ELF Award” for his significant contribution to the rescue of our patients.
Currently over 80 patients are receiving the treatment, and the aim is to complete the negotiation of reimbursement between the state and the pharmaceutical company, so as to ensure access for all eligible Cystic Fibrosis patients in our country.
But for a now small number of our patients who are not eligible for any innovative treatment due to their mutations and are in end-stage respiratory failure, lung transplantation continues to be the only survival option. In our country, the Greek lung transplantation program has been launched in 2019, but unfortunately our country has a negative ranking in organ donation. Wanting to help raise public awareness about organ donation and support the Greek transplantation program, our Association organized our campaign “Unlimited Breath- Be a life donor” at the beginning of the year. Thanks to our campaign and with the support of the President of the Republic Katerina Sakellaropoulou, we managed within 2 months to triple the organ donor registrations in the National Transplantation Organization’s Registry, while we continue our efforts to ensure the second chance for life for patients with Cystic Fibrosis, but also for every patient with respiratory disease.
This year we can celebrate World Cystic Fibrosis Day with optimism. The hard times are over and the miracle we have been waiting for since the day we were born has come. In the coming years we expect more innovative drugs to be added to our arsenal in the fight against the disease, and the first results of research into gene therapy that will lead to the definitive eradication of the disease are encouraging. The future for Cystic Fibrosis patients is promising and promising. As we have proven, patients can not only pioneer, but also lead and achieve the unachievable, and we promise to continue our fight to ensure “Unlimited Breath” for all Cystic Fibrosis patients in our country.”
The full article can be found in the online issue of the magazine”Peri Ygeias” here (p.30).
