On 29 May 2019, a press conference presented a report entitled 'The Future of the European Union'. Cystic fibrosis care in Poland. Status current and recommendations for improvement. The report analyses the reasons for the unsatisfactory results of cystic fibrosis treatment in Poland and recommends remedial solutions. It was developed under the auspices of the Polish Cystic Fibrosis Society.
Entire report is available here
Cystic fibrosis is an incurable, rare, chronic genetic disease that leads to premature death. Inherited from both parents, carriers of one of the many pathogenic mutations in the CFTR gene, it damages primarily the respiratory system, but also the digestive and reproductive systems. Excessively thick mucus impairs the permeability of the bronchi and bronchioles, as well as the pancreatic and liver ducts. In addition, many other organs are impaired, as well as underdevelopment of the vas deferens. Patients fight for every breath, struggle with chronic malnutrition, pain and infections that gradually damage the lung tissue. They spend many hours a day in rehabilitation treatments, have to follow a special diet and take huge amounts of medication. At the end of their lives, they are confined to bed. The most serious consequence of the disease is worsening respiratory failure - the leading cause of death in cystic fibrosis. There are an estimated 2,400 people living with cystic fibrosis in Poland. Thanks to well-organised newborn screening, about 80 new cases are detected every year. However, Polish CF patients live an average of only 24 years, 10-15 years less than in countries with better care systems.
(press release)