Eastern European CF Statistics

Call for European Cystic Fibrosis healthcare gap to be closed

A healthcare gap amounting to a ‘death sentence’ forCystic Fibrosis (CF) children born in Eastern Europe must be closed say researchers from the EuroCareCF Coordination Action for Cystic Fibrosis. A new study led by the University of Dundee and published today in The Lancet, has found that CF patients in Eastern European countries die far younger than in other, wealthier, EU countries.

EuroCareCF, led by Dr David Sheppard of the University of Bristol, provided a forum for groups from all over Europe to collaborate to improve the quality of life and life expectancy of individuals with CF. As part of this collaboration, Dr Anil Mehta of the University of Dundee led a team from 35 countries that examined outcomes for almost 30,000 CF sufferers born in long-standing European Union member states compared to those born in countries who joined after expansion in 2003. The resulting paper shows that despite similar population sizes and underlying gene frequencies for CF, the numbers of CF-affected children were lower in post-expansion EU member states. Dr Mehta says this disparity can most likely be explained by the tragic fact that a lack of healthcare facilities in new member states means that the majority of children born with CF in these countries will die in very early childhood, a situation not encountered in the wealthier EU countries for many decades. “We know that this disease occurs randomly in about 1 in 4,000 children born to healthy parents across the EU,” he said. “Despite this, the team encountered many fewer people with CF in poorer countries. CF patients there die far younger than in long standing EU countries.”

Nick Fahy, head of the health information unit in the Health and Consumers Directorate General at the European Commission, said, “Knowledge is key to improving health in Europe. For these rare diseases, there are so few centres of expertise that only by working together across the EU can we enable all citizens to have access to the best possible care. “This European cooperation also shows member states how they compare to best practice in Europe for different conditions, so that every health system can prioritise their resources to meet the needs of their patients."

Cystic fibrosis is an inherited chronic disease that affects many organs, particularly the lungs and digestive system. CF patients carry a defective gene that disrupts the transport of salt across cell borders. As a result, the body produces thick mucus that blocks ducts and tubes. Blockage of air passageways causes chronic cough and lung infection; blockage of the pancreasprevents enzyme delivery to the intestine to break down food; and blockage in the intestine prevents food absorption. Countries in Western Europe have committed significant resources to making the necessary treatment available to CF sufferers, helping them to live longer and fuller lives.

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