Care
CF Europe ensures that the patient’s perspective is included and considered in any future improved European Standards of Care. In addition to this, CF Europe supports its members to achieve access to the best possible care in their country by informing patients and professionals, by organising training, lobbying on a European level, and supporting lobbying on a national level.
Twinning Expansion Project
The Twinning Expansion Project (TEP) is a collaboration between CFE and the European Cystic Fibrosis Society (ECFS) which aims to build up friendships and partnerships between CF communities in different countries. It does so, first of all, by twinning one expert CF centre with a long-term outstanding history in CF care (“mentor site”) to a “mentee site”, a centre with the ambition to improve clinical outcomes through the guidance, advice and collaboration of a well-established CF centre.
Nine twins were established in 2020. After launching a new call to CF care providers in Europe in 2023, we have 21 extra mentee CF Centres being mentored by 19 CF Centres.
The aim of the Twinning Expansion Project is to address discrepancies in clinical outcome for people with CF across Europe. Building long-term collaborative partnerships between mentors and mentee sites and addressing specific needs of the mentee sites, the Twinning Expansion Project will optimise patients’ clinical outcomes.
Aims of the Twinning Expansion Project
1. Establish new CF centre mentor and mentee sites with the aim of facilitating collaborations and exchanges between the twinned pairs.
2. Identify unmet needs in CF care in the mentee sites and formulate feasible goals.
3. Grant access to ECFS learning resources to participating CF centres and translating these resources into relevant languages.
4. Facilitate knowledge sharing and networking opportunities between CF centres and patient organisations in different regions.
Twins meeting up all over Europe!
The new twinning pairs have been meeting up at conferences and arranging visits to see how clinical care is delivered in each other’s country.
We have asked the mentors to make at least one visit to the mentee site and for the mentee CF centre clinical team to visit the mentor’s CF Centre. The aim of the visits is to establish a partnership, get an overview of the mentee site, discuss unmet needs and opportunities, and build on this knowledge to develop further twinning.
The visits have including a CF physician and possibly a CF nurse and/or other CF team members. The aims of the visits is to establish a partnership, get an overview of the mentee site, discuss unmet needs and opportunities, and build on this knowledge to develop further twinning. The duration of the Twinning Expansion Project for new sites is three years but we hope long term friendships will continue.
Patient Organisations begin twinning!
A novel aspect of the Twinning Expansion Project is that we have also engage patient organisations, who play a pivotal role in identifying and addressing unmet needs (e.g. adult care, trained healthcare professionals), facilitating communication, and signalling possible mentee sites. Well-resourced patient organisations with advanced advocacy, digital expertise and capabilities have provided guidance to those patient organisations needing more support or training. As well as the twinned pairs building their partnership, the project also aims to support and facilitate networking between patient organisations and CF centres participating in the project.
CF Centres twinned in 2024
| Mentee | Mentor |
| Tirana, Albania | Rome, Italy |
| Yerevan Muratsan, Armenia | Munich, Germany |
| Yerevan Arabkir, Armenia | Zurich, Switzerland |
| Sofia, Bulgaria | Rotterdam, the Netherlands |
| Nicosia, Cyprus | Milan, Italy |
| Zagreb, Croatia | Copenhagen, Denmark |
| Tallin, Estonia | Cardiff, UK |
| Tartu, Estonia | Cardiff, UK |
| Tbilisi, Georgia | Hanover, Germany |
| Prishtina, Kosovo | Utrecht, the Netherlands |
| Riga, Latvia | Bordeaux, France |
| Skopje, North Macedonia | Berlin, Germany |
| Banska Bystrica, Slovakia | Manchester, UK |
| Bratislava, Slovakia | Barcelona, Spain |
| Ankara (Paediatric), Turkey | Leeds (Paediatric), UK |
| Ankara (Adult), Turkey | Leeds (Adult), UK |
| Istanbul, Turkey | London (Kings), UK |
| Ivano-Frankivsk, Ukraine | Marseille, France |
| Kyiv, Ukraine | Petah Tikva, Israel |
| Vinnytsia, Ukraine | Montpellier, France |
CF centres twinned in 2020
| Mentee | Mentor |
| Bucharest, Romania | Leuven, Belgium |
| Cluj-Napoca, Romania | Brussels, Belgium |
| Lviv, Ukraine | London (Brompton), UK |
| Odessa, Ukraine | Jerusalem, Israel |
| Zaporizhzhia, Ukraine | Jerusalem, Israel |
| Varna, Bulgaria | Southampton (Paediatric), UK |
| Athens, Greece | Southampton (Adult), UK |
| Thessaloniki, Greece | Southampton (Adult), UK |
| Kozle, North Macedonia | Cambridge (Adult), UK |
To find out more, you can contact the CFE office.
Access2Meds
Over the last few years, the ECFS-PR has been collecting clinical data from people with CF to identify changes to care needs. This data set provides a wealth of insight into clinical care, however it is limited in providing insight into people’s perception of access to medicines. To fill this gap, CF Europe ran surveys to patients, caregivers, and clinicians to gain insight into the overall picture and between country variation in access to vital cystic fibrosis (CF) medicines across Europe during the COVID-19 pandemic.
Key messages
1.More people with CF live in urban than rural areas
2.Full time employment rates are low amongst people with CF
3.Problems accessing CF medicines are more common in Eastern than Western Europe
4.Healthcare systems in Western Europe ease the cost of CF treatments more than those in Eastern Europe.
Findings
A key focus of the analysis was comparison between Eastern and Western European countries. These results will steer the future strategy of CF Europe, and can be used by individual countries seeking to improve the lives of people with CF.
Overall, we found many people with CF and their carers (65%) are struggling with the cost of living. This was particularly clear for Eastern Europe (85%) compared to Western Europe (61%). This is further exacerbated as few respondents (26%) were in either full time or part time employment. This may change in the future as 33% of respondents were students reflecting the young CF population, but whether it will improve is dependent on their future health outcomes.
CFTR Modulators
Improving health outcomes is reliant on access to the CFTR modulators (Kalydeco, Symkevi, Orkambi, Kaftrio) as 82% of respondents are eligible for at least one of the modulators. Yet, only 26% of respondents had access to a modulator before, with a particular contrast between Eastern (13%) and Western Europe (34%). This contrast is due to variation in availability in individual countries, and highlights the differences in outcomes we might see in the future if more countries don’t get access to the CFTR modulators.
COVID-19 and access to treatments
Across Europe, lockdowns and rules varied from country to country. However, most people with CF were instructed to remain indoors as much as possible to avoid contracting COVID-19. The impact of the pandemic had a large impact on people with CF, as 23% of people in Western Europe and 50% in Eastern Europe struggled to access treatments as they were unable to travel to clinics and the cost of the treatments. Such additional pressure had a detrimental impact on their physical and mental health.
Access to CF Treatments
Generally, CF treatments that help alleviate symptoms are generally accessible across the European CF Community, particularly to clear mucus (80%) and pancreatic enzyme replacement treatments (91%). However, there was still quite a contrast between Western and Eastern Europe, for example:
- 68% have access to airway clearance treatments but in Western Europe access was much higher (81%) compared to Eastern Europe (45%) due to lack of trained staff.
- 78% have access to IV antibiotics when they need it across Europe but, the barriers in Eastern Europe were predominantly due to cost (49%) and availability in the country (25%).
- 80% have access to treatment for pseudomonas with a large discrepancy between Eastern (71%) and Western Europe (85%).
- This discrepancy was even more noticeable for access to oral/inhaled antibiotics (92% in Western versus 58% in Eastern Europe) and access to Insulin for CFRD (94% in Western versus 73% in Eastern Europe).
Available support
Overall, people with CF don’t feel that the healthcare system in their country helps to ease the additional financial cost of CF medicines (43% in Western Europe and 80% in Eastern Europe).
These results particularly highlight the need for CF Europe to help support national patient organisations to overcome the identified barriers and ensure all people with CF have access to treatments when they need it to reduce avoidable delays which are detrimental to their health. Going forward, we are committed to steer forward oru advocacy work to highlight the identified barriers but also the discrepancy between countries which exacerbated health inequalities and poorer outcomes across European countries.