Forty years ago, a baby, born with Cystic Fibrosis, was only likely to live for a few months. Nowadays -thanks to early diagnosis, improved treatments and advice on how to manage the disease from specialised CF Centres - more and more people with CF grow up to the adulthood.

The situation in our country is partly similar to the developed countries, but slightly discordant. 30 years ago, the CF Outpatient-care Clinic in the Heim Pál Hospital for Children began with 7 patients. Now the number of patients there is 124. All together, there are about 530 patients in Hungary. In the 70’s the CF children lived only 2 or maximum 3 years. In the 80’s the survival rate had increased up to 10-13 years of age. Nowadays it is up to 20 to 30 years.

Due to the intense struggle for the CF patients by some enthusiastic doctors, in despite of the sagging economy of Hungary, the Health-care Service has supplied all of our patients with the most important medicines and equipments free of charge. In consequence of this, in the last years we were able to start with new therapeutic regimen, high strength enzyme preparations, ursodeoxycholicacid, semi-elemental formulas, high-calorie supplements, DNase and antibiotic inhalation.  But in spite of these possibilities several problems still remained which have to be solved. Our most important goal is to build up a real CF center system.

Unfortunately in Hungary almost all the doctors work voluntary with CF patients. The hospitals or the outpatient clinics get no extra support for this work.
We were at the CF Day on the European Parliament to mediate the voice of our patients and their families and handle their requests and needs:to give the best support for them.

We would like establish 5 CF Centers for the children (under 18) and 5 Centers for the adult patients. Recently we applied and requested support from the Ministry of Health for our aim to be able to treat our patients according to the European Consensus. We ask the decision makers in the Ministry of Health and also you, who are here with us, to help and support us in establishing these CF Centers for our almost 530 patients to be able to grow as old as I am ( 75 years old!)

Dr Klara Holics
President of the Hungarian CF Association