EHC Inhibitor Summit 2019

The fourth EHC Inhibitor Summit took place from 28 November to 1 December 2019 in Barretstown, Ireland.

Traditionally, the purpose of the Summit was to offer a special time and space for people with haemophilia who have inhibitors, as well as their family members and caregivers, to build a community, educate and empower themselves to improve the quality of their lives.

This year, the numbers of the Summit attendees matched the record numbers of the last year – over 150 attendees– filling the full capacity of accommodation in Barretstown. EHC Inhibitor Ambassadors were encouraged to try and bring new participants, and this challenge was successfully fulfilled, thus further expanding the European inhibitor community. 

A wonderful development seen this year, was much higher numbers of siblings, partners and caregivers attending the summit, showing that the lives of these groups are equally affected by the inhibitor and they are looking for meaningful support. This change in the composition of the group, did have a profound effect on the summit atmosphere, making the community more genuine, heartfelt and reflecting real-life constellations.

During one of the sessions of the EHC Inhibitor Summit.

Medical sessions – especially, the sessions about the treatment products in the pipeline for the people with inhibitors, and managing a tooth extraction – were the highest-ranking sessions in the evaluation. Participants greatly appreciated the possibility to engage in the discussion with the speakers during and after the sessions, indicating that there are a lot of unanswered questions. Also, the sessions about ITI, latest in the inhibitor treatment and management of breakthrough bleeds were hugely appreciated as they addressed real-life questions and challenges, thus being very practical. However, a clear take-away message from the evaluations is that having a patient perspective alongside the presentations from the healthcare professionals is essential as it puts the science presented in the perspective of real-life application and lived experience.

Also, peer-to-peer sessions were among the highest rated in the evaluations, some participants indicating that more time should be dedicated to these encounters, flagging that this is a unique opportunity for some of the participants to exchange with their peers. A special highlight was the group of partners and caregivers, which met one extra time, outside the schedule, because the need for support was so great. Other sessions including peer interaction and being together, for example, home groups and evening programme, were greatly appreciated as it offered the sense of support and community.  

This year’s practical parallel sessions were focused around physical activity and psychosocial well-being, and were attended with high enthusiasm. A comment often heard already during the summit and reencountered again in the evaluation forms, was that it was a hard choice to be able to select only one session to attend, which indicated that there is a great need to discuss the practical day-to-day issues such as sex and intimacy, fitness or understanding one’s children with inhibitors, most probably because on national and local levels the stronger focus is on medical management of inhibitors. Evaluations also contained a long list of themes that the participants would wish to discuss in the future.   

The very positive evaluations, as well as the high numbers of attendees and new attended, testify that the EHC Inhibitor Summit remains and initiative that is highly relevant, needed and appreciated in the European inhibitor community. On one hand, due to the advent of the novel treatments in the inhibitor space that bring a lot of hope, but also a lot of questions and concerns that need to be addressed. On the other hand, despite of the novel therapies becoming available, the ITI remains the main recommendation for people with inhibitors and there is an ongoing interest in the community about this aspect of inhibitor treatment. Furthermore, there are the challenges that the inhibitor community is facing that will not go away with the best treatment available and where continued support will be necessary, i.e. permanent joint damage and chronic pain, which entail psychosocial difficulties, isolation etc.

Above all, it is the value of the support of this amazing and resilient community that the EHC Inhibitor Summit brings!

 

“Love it here! Magic in the air!” as one of the EHC Inhibitor Summit participants has put it. Have a look yourself and visit the photo gallery of the event here.

The Summit and the EIN in 2019 were made possible thanks to educational grants from Roche, Sanofi-Genzime and the founding partner Takeda.