Access to appropriate CF care is inefficient throughout Europe

Although the living conditions of CF patients are especially hard in most of the new EU countries and the countries not (yet) belonging to the EU, the deficiencies in CF care and access to appropriate care or not limited to this region. Problems to get access to care occur in countries with weaker and stronger economies and poor access to optimal care is limited by other than financial barriers.Some examples from the EU:• In Belgium 1 of 7 patients ask the national patient association for financial help to cover the treatment costs. • In Germany only 50% of the treatment costs are paid by the German health care insurances. The other 50 % have to be covered from other sources like donations, research projects etc. Therefore the German CF association with a budget of € 500 000 in 2006 as well as the Christiane Herzog Foundation set up financial programs to support CF clinics. • In Greece the number of hospitals, single-bed rooms as well as medical staff who have received special training for CF is small or non-existent. • In the R. of Ireland the median age at death in 2000 was only 17 compared to 30 years in neighboring regions (after the independent Pollack Study and a national campaign for an adequate number of multidisciplinary CF clinics and segregation measures major progress was made). • In Latvia only 6 % of patients are diagnosed; there is no specialized CF center, only one doctor interested in CF• In the UK nearly 1/3 of patients face problems obtaining adequate life-saving treatment according to a survey of the Cystic Fibrosis Trust in 2004Deficiencies in CF care in Europe due to more then financial barriers!The above examples and the Survey on Data on CF clearly show that access to appropriate care is not only limited due to financial means. CF care in Europe should and could be improved, without necessarily having to invest a lot of money.
European Standards of care offer best guarantee to optimal care

A mixed public of CF families, caregivers and CF experts at the V4-CF conference in the salt mine
For more than 40 years now the CF community, patients, their families, doctors, other caregivers and scientists have been struggling against Cystic Fibrosis. Today scientific and medical knowledge about the biological causes of CF and the way to treat this disastrous disease is far advanced. In 2005 a European Consensus of Standards of CF Care was published in which 36 experts from 15 European countries, the USA, Israel and Russia were involved. In countries offering well developed CF care in hospitals which follow these guidelines about 50 % of the CF patients are 18 and older, and the average life expectancy is 40 years and more. The lives of CF patients depend on correct treatment according to these standards.