Life-saving medicines for over 150 cystic fibrosis patients are finally available

Hrvatska udruga oboljelih od cistične fibroze

The Croatian Association of Cystic Fibrosis Patients has succeeded in obtaining their much-desired goal for which they had applied themselves for months – the life-saving medicines Kaftrio, Kalydeco i Orkambi have been finally included on the Croatian Institute for Health Insurance’s (HZZO) Selection of Essential Drugs. After several months long battle to get life-saving drugs and conducted communication campaign with the slogan ‘Kaftrio-breath of life’, the decision becomes effective mid-October, and the lives of those suffering from this illness shall no longer depend solely on the inevitable course of the nasty illness.

Medicines unavailable in Croatia

The crucial assembly by the HZZO’s administrative council was preceded by a positive opinion by their medicines committee held at the beginning of September, after previous three discussions (in May, June and July) had been held without clear decisions leading to saving lives.

For years the sick of cystic fibrosis have been enduring exhausting therapies, treating only the symptoms of the illness, and their average life expectancy was between 30 and 40 years. Kaftrio, Kalydeco and Orkambi can significantly extend, as well as improve and facilitate their daily routine – they only needed to become available. Given that in all EU member states the European Medicines Agency (EMA) has allowed the stated medicines to be put into circulation, they are already available within the general healthcare system in Slovenia, Austria, Greece, England, Spain, Scotland, Denmark, Ireland, France and Italy, and soon in Croatia, too.  

Cistična fibroza članovi

‘Kaftrio – breath of life campaign’ for a more peaceful life

Apart from the positive decisions firstly by the committee, then the administrative board of the Croatian Health Institute, the Croatian Association of Cystic Fibrosis Patients’ battle got their help thanks to a continuous engagement by the social networks and the media, as well as support by the public and private persons and organisations from Croatia and abroad.

In April 2021, the Association launched the already mentioned “Kaftrio – breath of life” campaign on social networks, putting the greatest focus on emotional testimonies in which they described the process of painstaking therapies they go through every day. This way, the Association members themselves took on the role of ambassadors, keeping diaries during their hospitalisations under the hashtag #kaftrioudahživota. Such announcements also achieved the greatest reach and impressions among Facebook and Instagram users. In addition, numerous celebrities clearly called for the inclusion of revolutionary drugs on the HZZO’s selection, and support came from the Croatian national football team, as well as many other domestic clubs and athletes. Many national and regional media, from general information to lifestyle, with their consistent reporting and monitoring of the entire situation, made the Croatian public stand up, making them aware of the multiple appeals of the sick to stop denying them the right to live.

In addition, the Association launched a petition at the end of July in order to provide additional information and gathering support from citizens. Signatures came from different parts of the world, and in addition to Croatia, many signatures also came from Austria, France and Germany. It turned out that people are well-aware of the unfair position in which all those suffering from this serious disease were, because over 34,000 people signed the petition, and messages of support arrived daily through the Association’s other communication channels.

What is cystic fibrosis – disease killing the young

Violent coughing, coughing up blood, indigestion and sinus issues, difficulty breathing, and chronic colds and pneumonia are just some of the symptoms that sufferers struggle with, from new-borns to middle-aged people. Life with this deadly disease is characterized by the formation of a thick, sticky secretion on all excretory glands, and in order to survive, the patients must perform four to six inhalations daily from a young age. In addition, they take almost thirty pills a day and keep a strict diet, because any deviation leads to additional progression of the disease and can end in premature death. Until now, the last chance to prolong life was an extremely expensive lung transplant, often abroad, prolonging life only by a few years.

Find out more about the Association, and how they achieved the goal enabling the patients to look into a healthier future without fear on their official Facebook and Instagram profiles as well as on their website.