“Closing the Gap in Cystic Fibrosis Health Outcomes
and Survival for all Patients within Europe”
Meeting of members of the European Parliament and the European Commission
with CF patients and experts from across Europe

Wednesday, 10 November 2010 from 13:00-15:00 (European Parliament Room ASP 7 F 387)

On behalf of CF Europe, I would like to welcome you and thank you for accepting our invitation to discuss the need and possible strategies to close the gap in Cystic Fibrosis health outcomes and survival within Europe NOW.

Cystic Fibrosis Europe was founded in 2003 and represents more than 40.000 Cystic Fibrosis patients and families and patient associations in 38 European countries.
Cystic Fibrosis (CF) or mucoviscidosis is the most frequent life threatening inherited disorder in Europe. CF affects mostly the respiratory and digestive system.  Without timely diagnosis and proper treatment children with CF have a very short lifespan and die of lung destruction and undernourishment. However, children diagnosed at birth who have access to appropriate CF therapy have a mean life expectancy of 50 years. Children and young adults with CF can and should live better and longer everywhere in Europe

A recent survey amongst our member associations revealed that there are over 40,000 cystic fibrosis (CF) patients in Europe, but depending on where they live, some die before their 10th birthday; others live well into their adulthood.  We not only noted major differences between older and newer EU countries, but also between neighbouring countries who face a similar socio-economic situation; and sometimes even within one country.... Differences between age at death, number of diagnoses and deaths, but also in quality of life –ranging from children who spend most of their life ill at home or in the hospital to adults working and raising their own children and sometimes even grandchildren.

Main problems raised by the CF associations are the lack of adequate services for CF patients (CF centers and professionals working according to European and international standards of care); access to treatments and medication (limited admission in hospitals, possibility to obtain essential medication for home treatment and hospitalisation, physiotherapy and nutrition; no access to care for adults and/or transplantation) and a proper CF registry.

Solutions for better health outcomes and survival at a relatively low cost are possible, if some important steps are taken towards equal access to care. Early diagnosis, regular follow-up by specialists, proper hygiene and correct treatment of early symptoms can prolong and save lives, but also save extra health costs. Ongoing efforts of CF patients, families, associations and health care workers will lead to better and more accessible CF care, and better and longer lives for all CF patients in Europe.  But the patients don’t have time to wait too long...

During our 2d European CF Awareness Week (15-21 November) we urge European and national authorities to do everything in their power to support these efforts and to take away all barriers to equal access to the basic treatment standards for all European CF patients.
Today we invite you to discuss the disparities and possible solutions to diminish the gap in access to care and chance to survival for people with CF within Europe.

Dr. Mehta will shortly present some important conclusions from a study funded by the European Commission on an inter-country comparative demographics of the European Cystic Fibrosis population, published in The Lancet of March 2010, showing a shocking disparity in number of patients and age at death between older and newer EU member states, independent of population sizes and underlying gene frequencies for CF. This gap can most likely be explained by the tragic fact that the majority of children born with CF in these new EU countries die in early childhood due to a lack of access to appropriate diagnosis and healthcare. This gap is especially painful given affordability of care and the recent scientific progress which promises curative treatments of CF.
It is of our prime responsibility to ensure that all patients have equal access to current treatment modalities now, to enable them to benefit from disease stopping therapies in the near future. It is time for action now!  The unacceptable gap in health outcomes and survival in CF in Europe because of unequal and limited access to appropriate care, to health care profs who know what to do and/or  treatments needed to survive and to live well into adulthood, hast to and can be closed.

Of course available budgets play a role but primarily it’s a question of priorities and organisation of care, education and motivation and willingness to adhere to and implement recent knowledge

We can’t and shouldn’t accept the wide gap in healthcare access and outcomes sentencing you to a premature death as child or a chance to live as an adult… depending on where you’re born in Europe!

Over 40,000 lives are at stake.
We believe that strategies can be developed to work towards better treatment and care and survival for patients affected by CF and by example, help other rare diseases throughout Europe.

We believe the European Union and Commission can contribute to develop strategies to close the gap in health outcomes and survival in CF in Europe

• by bringing the gap in CF care to the knowledge of authorities and stakeholders
• by supporting initiatives studying possibilities to close the gap in health outcomes and survival in Cystic Fibrosis and establish adequate CF care in European regions  where lower health outcomes and survival are shown and by supporting implementation of knowledge gained through research into practice.

Cystic Fibrosis is a key model for many other rare diseases and solutions found to diminish the gap in health outcomes for CF could be implemented throughout the rare disease community.

We therefore look forward to discuss with you possible strategies to fight health inequalities and to enhance adequate access to diagnosis, therapy and survival for Cystic Fibrosis patients and their families everywhere in Europe.

Karleen De Rijcke
President CF Europe

www.cfeurope.org
karleen@muco.be