Cystic Fibrosis Europe

Warm Welcome in Frozen Poland

The Polish CF association, Polskie Towarzystwo Walki z Mukowiscydoza, invited me to visit Poland in order to share experiences and to see how to improve the care of CF patients in Poland.

It proved to be a very interesting and unforgettable experience…

I happened to be in Poland on the coldest days they had experienced in ages. Temperatures went under minus 30 °C! But I was pleasantly surprised by the warm welcome I received everywhere. The patients, the parents and the CF specialist I met were all very motivated, very capable, and very well informed people who know what is needed to provide optimal care for the children and young adults with CF in their country.

The goal of my visit was to generate more support for CF patients by showing health authorities that Polish CF care should be improved and that it could be improved with a modest amount of financial support.

I had a very interesting exchange with the parents who lead the Polish CF association. Some people traveled 17 hours for this meeting! I was impressed by how much those people can do with their limited means. After this meeting and lunching on delicious ‘pierogies,’ I visited their office and the CF clinic in Rabka. I was very sad to see young patients in a poor health and hospitalized in uncomfortable conditions.

Taking into account the genetic risk and the total population of Poland, one would expect to have at least 4000 CF patients in Poland. Presently, only 1000 patients are diagnosed and alive! In my home country of Belgium, about 50 % of CF patients are 18 years or older where as in Poland only 20% or 200 patients have lived to adulthood. Factor in the potential number of undiagnosed patients and you realize the mortality rate for CF patients in Poland is high. Sadly, the vast majority of CF patients die before their 25th birthday.

Compared with other European countries, access to proper CF treatment in Poland is limited. For instance, without proper diagnostic tools, many patients go undiagnosed. However, diagnosed patients do not have the financial means to buy the essential medication and medical equipment needed to survive. Unfortunately, patients have to pay full price for all antibiotics taken at home which costs about € 300 a month. Compare this to the average monthly salary in Poland of about € 400 and it is clear to see that parents cannot afford to pay for the proper treatment for their children. Moreover, transplantation is not yet available to Polish CF patients. Yet, even modest changes can improve the plight of CF patients.

In the treatment of CF, preventing complications is a priority. However, since antibiotics cost full price and because they are unaffordable, parents watch their children’s health deteriorate. Unfortunately, treatment at this stage is more expensive and less effective. Clearly, expensive and uncomfortable hospitalizations can be avoided if CF specialists can see patients regularly. This is because typically, treatment costs are lower at infection onset than in latter stages of the infection. Thus, not only will regular clinic visits prolong and save lives, but it also reduces health costs.

Another possibility to improve the quality of life and life expectancy of people with CF in Poland is to prevent cross infection in the clinics. It is common knowledge that CF patients can be infected by specific bacteria, such as Pseudomonas aeruginosa, which may lead to a rapid decline of their lung function and early death. CF patients should not share a room with others and certainly not with patients who have different bacteria. Doctors, physiotherapists, nurses and other people in the clinics need to adhere to strict hygienic rules, e.g. wash or disinfect their hands after patient contact. Polish CF patients often have to share a room with other CF patients. Even if in some clinics patients are separated during the night, they eat meals in the same room, watch TV together and even do their physiotherapy in the same room at the same time, regardless of their bacterial status. Therefore implementing stricter cross-contamination guidelines will benefit all patients.

Although Alicja, Vice President of the CF association and my wonderful host, arranged everything perfectly, Father Winter interfered. Traveling 300 km Krakow to Warsaw proved problematic and by the time, we arrived after our 10-hour journey, our meeting with the Minister was cancelled and the reporters present to report on our meeting left.

However, thanks to the perseverance of the Polish collaborators, we achieved a lot. One TV crew was waiting for us at the railway station and we conducted an interview in the bitter cold. The Minister not only talked with Alicja for a long time via phone, but he also met with four parents of CF patients in his office. He promised that CF would be part of the new reimbursement list of medications published in March. He also appointed a well-known CF specialist as consultant.

The media also responded well. Our visit to discuss CF care in Poland appeared in several major newspapers and a medical journal promised to publish an article about CF. We also had the opportunity to appear on two television shows and another local TV station will produce an item on CF to air later. This media attention should bring more attention to the plight of CF patients. Last year a TV show dedicated to CF provided 100 of the poorest CF patient’s medication for a year. In addition, this year, Polish authorities donated 125.000 € to buy physiotherapy equipment.

The courage and strength of the parents, but also of the young patients and the CF physician I met, left an unforgettable impression. Even with their limited means, the CF association realized positive and easily administered changes could dramatically improve the lives of Polish CF patients. I believe that their ongoing efforts will lead to better and more accessible CF care, while providing a better and longer life for all CF patients in Poland.

Unfortunately, patients do not have time to wait too long. I sincerely hope all their efforts and an improved national and international solidarity will be successful in providing access to the basic treatment standards for all Polish CF patients

Karleen de Rijcke
President Cystic Fibrosis Europe

January 2006