Cystic Fibrosis Europe

Central & Eastern Europe
Cystic Fibrosis Network Building Conference
21-23 April 2006, Warsaw, Poland

Cystic Fibrosis Europe organized its first Central & Eastern European CF Network Building Conference from 21 to 23 April 2006 in Warsaw, Poland. The primary aim of this conference was to reinforce patient associations, define the needs in the region and develop strategies to improve the care and quality of life. Representatives, mostly CF parents and young CF adults, from Armenia, Czech Republic, Georgia, Latvia, Macedonia, Poland, Romania, Russia, Serbia, Slovak Republic and Ukraine came together to learn from each others experiences and from the expertise present in countries where CF care is more developed. Conference languages were English and Russian. To ensure that everyone who could profit from this conference would be able to attend, CF Europe paid all costs for all participants (transport, lodging and conference). A very heavy, but valuable investment!

Interesting update on CF care by Prof. Strandvik
Prof. B. Strandvik from Sweden gave a very interesting update on standards of care in CF. Her vast experience and knowledge was very helpful for all present, especially since she showed that a treatment doesn’t have to be the most expensive to give the best results. Treating even very mild symptoms early is important. Unfortunately time was too short to share all her expertise and experience with the participants who would have liked her to keep on talking for days!

Building strong patient associations to ensure better care and better quality of care
Eurordis, the European Association for rare diseases, presented their work with and for patients in Europe. The CF associations from the Czech Republic, Poland, Belgium, Armenia and Georgia presented some successful experiences and problems they encounter and new ideas to take new ideas home to try out in other countries.
The round table on ‘Building strong patient associations’ was probably the most revealing part of the conference. The representatives from the different countries were encouraged to hear that they’re not alone with their problems and that successes are possible if you keep on fighting.
Although the situation in each country is different, they are all confronted with a range of common problems, specific to eastern and central Europe.

“Thank you again to you and to all of the board members of CFE for the very well organized conference. It was a very encouraging and inspiring experience. It was lovely and refreshing to meet people who are really understanding!!!”
SB, Macedonia

Limited access to care
First of all there’s the difficult access to care. Most countries seem to have some good CF paediatricians, but can’t buy the necessary treatment. A lot of essential treatments and medications are not available, or if they available they’re so expensive few can afford them. In most countries medications such as basic antibiotics have to be paid full price. Often CF patients have to pay about a whole month’s salary to pay for their monthly treatment. Families depend on donations from charity organizations, western CF associations and pharmaceutical companies to get the necessary medication. These donations are never enough to help all the children and young adults and of course the supply is very insecure. As a result the majority of the CF children die before they reach adulthood or as young adults.

No care for CF adults
But even in this difficult situation the percentage of CF adults is increasing. Another common problem is that there’s no care available for adults. Very little is known about care for adolescents and adults. There are no adult physicians who can or will treat CF adults and the law in most countries forbids paediatricians to treat patients older then 18!

Little support and understanding from the government
Most governments have to work with a low budget so the money available for healthcare can be expected to be lower. But the problem is more then a financial problem. Most frustrating is the lack of interest and understanding of the authorities. The reactions go from “there’s no money, so why should we invest the little we have in children who die anyway?” to “CF children can live into adulthood, so we keep our money for really serious diseases”. In other countries the CF medication is put on the list of free treatments, but it remains a paper promise, in reality it’s not available for free.
Governments (ab)use the (cheap) argument that there’s no money available, that they’re a poor country. This may be true but often less essential and more expensive treatments are reimbursed instead of cheaper life saving treatments such as home antibiotics. If more money would be invested in prevention and early treatment of mild symptoms, a lot of money could be saved on more expensive treatments…

Social barriers
General acceptance and knowledge about handicaps are very low in most regions. For CF it’s even worse because very few people have ever heard of the disease. Families and especially young adults feel very isolated. Parents are afraid to speak about their life with CF because they fear rejection. This makes the work of the CF associations even more difficult. In most countries a very small group of families have to do all the work and it’s very hard to find a patient or parent who wants to talk to the media and authorities. It’s up to some very courageous people to come out and fight for a better life for CF patients. This is often very discouraging, but I had the opportunity to meet some of these active people at the conference and am convinced they’re doing a great job!

A lot of participants shared ideas to involve the CF families that worked for them and can be useful for other associations who have problems to activate their CF families:
• Let CF adults share their experiences and expertise with younger families (positive experience for both parties)
• Promise parents something for free, e.g. medication if they come to a meeting. If they come try to make friends with them, so they keep on coming.
• Holidays with families
• Fun activities with young adults
There were some concerns about risk of cross infection when organizing meetings, but if all necessary precautions are taken, associations who organize these meetings think the benefits of these meetings are too important to stop organizing them. A lot of patients meet in clinics where no proper measures are taken to prevent cross infection, at the meetings the necessary precautions are taken.

Important: information, information and… information
But nothing will change fundamentally unless you can change the mentality of the parents and eventually also the public. Families need education on how to treat the disease but also how to cope with CF. The public should know that people with CF are not mentally retarded, are not contagious and can live relatively normal lives if they’re treated appropriately. Doctors, physiotherapists and other healthcare professionals have to learn about proper diagnosis and CF care and especially about treating adults.

Become friends with the doctors
Families need good doctors to help their children to stay live and to live good lives. A good collaboration is essential. In Georgia for instance a doctors who works closely together with the association convinced specialists from different disciplines to work one day for free for the CF patients.
Doctors should also lobby together with the patients to make treatments more available.

Several ideas were suggested that may help to improve the situation.
• Exchange between universities: Most universities have a budget for international exchange. We should try to set up collaborations between universities who have a good knowledge of CF and less developed regions.
• Collect international stories from people and families who live with CF to be used all over Europe (CFE)
• Make an info sheet for schools to be translated in the different languages (CFE)
• Create a website forum or e-group for CF adults in Central and Eastern Europe, maybe with the help of Eurordis?
• Get well motivated dossiers to lobby for CF specific medication with the authorities (e.g. effect and cost efficiency of antibiotics) - CFE will discuss this with ECFS

On Sunday morning the participants discussed possible projects to improve the situation in their region. Together with the CFE representatives they developed an interesting project to reach as many people and goals as possible.
The idea would be to set up a training programme by European experts for CF families and professionals, in collaboration with local patient associations. Participants should receive some material help e.g. medical equipment as an incentive to join the programme and to ensure the long term effect. Equipment connected to the training (e.g. Flutter for a physiotherapy training) will ensure the practical implementation of the training and training ensures good use of the equipment.
The international education programme can be used as an instrument to obtain other goals such as media attention and lobbying (international experts can accompany local representatives on their visit to health authorities).
But CFE will have to find the money first to be able to realise this very important project.

“WE CAN DO MORE AND BETTER”
The conference was an inspiration for many participants. One of the representatives concluded: “We will go home with the idea that we can do more and better”.
The most important aspect of the conference was the exchange between the representatives. Meeting other people working towards the same goals, sometimes even people from their own country they never met before, was a very positive experience. They experienced they’re not the only ones who have problems and that a lot of other countries experience the same. And they felt encouraged to do more to confront these problems once they were home.
Olga, a mother of a CF patient and representative from the West Ukrainian CF association, gave a very strong testimony that inspired us all to continue fighting. “I knocked on the doors of the authorities every day, before work, after work. They didn’t know my name but they would see me sitting in the corridor and say: ‘O no, CF again!’ and I think they finally helped me to get rid of me. You have to try to turn an enemy in a friend. Be polite, smile, say thanks, send holiday greetings and after a very long and gradual process they get used to us, to our problems and to the idea that they have to help us! Sometimes it’s very discouraging, especially if you don’t get support from the other parents, but every small sign, every small result, every encouraging word gives you the courage to continue!” Her motto: “I believe even one person can change the world!”

Inspiring experience for western representatives
To prepare the 40th anniversary of our Belgian CF association I read through all our bulletins from the very beginning until now. When I heard the people at the conference in Poland I was reminded of the situation in Belgium in the sixties and seventies. Hearing their stories was like getting back 20, 30 years: children who still die at a young age because they don’t get the proper treatment, no access to essential medication, hardly any support from the authorities, physicians who have never heard of CF, only 1 of 4 patients diagnosed before they die, exclusion at school, parents who’re afraid to talk about the disease… But also the testimonies of hope and sometimes despair, of continuous action, courage and perseverance, from parents and young adults who, often alone or with a small group of families, fight against the barriers of indifference and lack of knowledge. What makes it even harder for the patients and parents from Eastern Europe is that they know that better treatments exist, that a better life or even a relatively ‘normal’ life is possible, but that this not available to them because of financial reasons and political decisions.

By sharing our experiences en by supporting their information and lobby campaigns we can fight together for a better future for all CF children in Europe. (I heard the sale of chocolates increased unexpectedly in the region after hearing about -and tasting- the chocolates the Belgian association sells to finance her projects…).
But we didn’t only share our expertise, we also learned a lot from the participants. Their courage, their examples of never giving up, of keeping on knocking on doors (sometimes even literally as Olga witnessed) were an inspiration for my work in Belgium and Europe! The same never ending believe that progress is possible, from parents and young adults, also helped our Belgian association to move forward over the last 40 years.
IN CF Europe, we want to continue fighting, with the same courage, for a better life for people with CF, in the east and the west, across all borders, until all barriers are finally conquered!
Karleen De Rijcke, president CF Europe

“We hope we can meet again and in the future only discuss of moral and social issues instead of keeping our children alive as main priority!”
East Ukrainian

HOW CAN YOU HELP?

CF Europe wants to help the national associations in their information, lobbying and media campaigns. But we can’t do this without your help.

• Send us stories of people living with CF in your country
• Send us posters, pictures etc you used in you communication, fundraising and media campaigns
• Send us the form on ‘Data on CF in your country’
• Send us a list of your priorities, e.g. for which treatments you’re lobbying with your government

All results will be shared via our website for all to use!