LIVING WITH CF IN EUROPE… TODAY AND TOMORROW

Living with CF in Poland

From 36 million citizens in Poland, approximately 1000 have been diagnosed with Cystic Fibrosis (CF). Only 20% are over 18 years old while in most European countries 50% of the people with CF are older then 18. This low number of CF adults is a clear sign that access to appropriate care is poor in Poland. If all children had access to the care available in other European countries they would live longer!

While hospital care is free of charge, the minimal European standards of care applied in all common market countries are not met in Poland because of the lack of funds to make those standards available.

While medication is free of charge in the hospital, when the patient goes home, most of those absolutely necessary medicines must be paid for by the family. It must be noted that the average salary in Poland is about 500Euro a month while the cost of basic medicine for 1 CF Patient is about 300Euro a month not counting Physical Therapy, special diet, and special anti infection medicine for CF. And often there is more than one child in the family with CF.

The result of this situation is that while the child is in the hospital his condition is relatively good, when he goes back home and is unable to pay for the necessary medicine and treatment, his condition becomes worse again and is required to go back to the hospital. This is a viscous cycle: as time progresses the general condition of the child/patient becomes progressively irreparable and this leads to a shorter life for the patient. For this reason while 20% are more than 18 years old, 80 % of the children with CF die before they reach the age of 18.

While lung transplantation is a hope for CF patients in the European Union, most Polish children do not reach the age where a transplant is a solution for them. Even if they reach the age for transplantation, transplantation is not available for CF patients in Poland. They are obliged to go to another European country at their own expense. An average transplant can cost all together almost 100.000,00 Euro.

The National Polish Cystic Fibrosis Association provides support by furnishing medicine, supporting families with children in the hospital, supplying equipment and necessary supplies to help them face the needs of this devastating illness.

In Poland children with Cystic Fibrosis are dying while we are talking. We must do something to help those who cannot afford to treat their children with proper medical and physical therapies to ensure them a longer and healthier life. The first step was made two weeks ago – one antibiotic will be available for free for Polish CF patients. It’s like a first shining star in the cloudy sky.

Alicja Rostocka
Vice-president CF Association Poland

Seweryn was 10 years old. He died in Rabka this year. His parents are full of pain. But they are happy to know the picture of their son helps to explain the situation of Polish children with CF at the 1st European CF Day.

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