For photos of the event, see HERE
Officially, World Haemophilia Day is April 17. This is the birthday of World Haemophilia Foundation founder, Frank Schnabel. EHC celebrates this event a day earlier to accommodate a world-wide week of activity.
On April 16 from Dublin, members of our community gathered to honour not only World Haemophilia Day but also to officially launch EHC’s 30th anniversary Every Day is a Winding Road #EHCelebrate campaign. This includes a new animated short What is EHC? (available in English, Russian, Spanish and shortly French). EHC members and the general public also now have the ability to send EHCards and videograms reflecting on comprehensive care and their quality of life through our website, ehc.eu
EHC President Brian O Mahony opened our World Haemophilia Day celebrations and 30th anniversary, reflecting that hope and history may rhyme as we honour our past and forge towards our future. He looked back at how both the community and the EHC as an organisation changed and grew in the past thirty years. Brian noted that the focus of the community’s activities shifted from a focus on the safety of treatment products to the inclusion of all patients (such as people with inhibitors, women with rare bleeding disorders and other bleeding disorders) within the community and the activities of the EHC. As for the EHC, the organization has grown and is growing in staff, activities and volunteer engagement.
Professor Wolfgang Schramm outlined how through the Wild Bad Kreuth initiatives, experts from across Europe came together to ensure that the tragedies of the 1980s HIV and HCV contaminations would never be repeated by developing safety standards for plasma-derived treatment products. He also showed the long collaborative process to develop clinical protocols for the treatment of haemophilia and the determination of prophylaxis as the gold standard of treatment.
EHC MAG Chair Professor Peyvandi outlined the positive experience of working with patient organisations such as the EHC and outlined the achievements of joint work between clinicians and patients. This work has included the development of certification standards for European haemophilia treatment centres, advocacy efforts with the EMA on the guideline for the development of coagulation FVIII, data collection and the development and dissemination of scientific and medical information through the EHC scientific conference, the EHC Workshop on Novel Technologies in Haemophilia Care and the EHC New Product Review (NPR) publication. Professor Peyvandi also noted the great efforts made by the EHC to promote eradication of HCV in the haemophilia community, something that she sees realistically happening by 2022.
Radoslaw Kaczmarek dramatically quoted Irish-born Yeats in describing the EHC not waiting “to strike till the iron is hot; but make it hot by striking”. Radoslaw spoke about the revolution in treatment in haemophilia. He also described the development of the European principles of haemophilia care and their subsequent launch at the European Parliament in 2009 as one of the most significant achievements of the EHC.
EHC Steering Committee member Naja Skouw-Rasmussen from Denmark warned against complacency and called for continued efforts to not only improve access to care but to ensure that current achievements are maintained. She warned that growing cost-containment measures on national health care systems coupled with anti-European sentiments and a growing populist movement across Europe are a threat to access to health care and treatment that should not be ignored or underestimated. She concluded by noting that it is key to ensure that innovation is not only seen in haemophilia but also other rare bleeding disorders, calling for no one to be left behind.
Jim O’Leary, member of the inhibitor working group, underscored the importance of the work carried out by the EHC to empower the inhibitor community. For him, the biggest challenge that will be faced by the EHC in the coming years is an ageing population, which will be confronted for the first time to age-related co-morbidities. For him, the challenge will be to ensure timely access not only to haemophilia care but other medical specialties. Another challenge will be to ensure continued adequate care for people moving to care homes.
For Thomas Sannié from France, the future challenge of the EHC will be to continue to provide education and support to patients. The challenge will be also to be more inclusive not only of other rare bleeding disorders but also of other severities such as people with mild and moderate haemophilia.
The event continued with a panel discussion in which patients and clinicians outlined and discussed their perceived future challenges. Adam Sumera, Vice-President of the Polish NMO, noted how in many NMOs the main issue is to recruit and retain young volunteers to stay involved in the activities of the society, in particular as treatment levels improve. EHC CEO Amanda Bok pointed out that this is why the EHC has been focusing in the past few years on training youth and ensuring that young volunteers are engaged within their NMO. For her, it will be essential to develop a new framework in which these volunteers will be able to make their voice heard and given the opportunity to be passionate, active and grow into the leaders of tomorrow.
Panelists noted that the strengths of the EHC lies in its partnership and its ability to work with diverse stakeholders who are key players in the haemophilia landscape.
What message would you give to a newly elected ministry of health as a patient representative? produced clearer roads to advocacy. “Reflect on what your predecessor didn’t do, listen to patients and their needs and finally, collaborate with their representatives to improve care.” EHC CEO Amanda Bok unequivocally agreed, “We will need to redefine how we advocate. We need to create a framework that inspires people and that gives them a space to flourish.”
Panelists reiterated that adequately caring for an ageing population will be the main challenge in the next 30 years. In this regard, comprehensive care centres will need to reconsider the services they offer. Furthermore, panelists outlined how telemedicine may provide solutions to ensure that patients access timely specialised care, in particular when living far away from the treatment centre or within care homes.
Finally, discussions looked at novel treatments and how it will be crucial to ensure that data on the long-term effects of these novel products is collected. What endpoints should be collected? How can data be shared in the current legislative framework? Also are current Quality of Life measurements still reflecting accurately the efficacy of treatment. “We are at an historic low in joint bleeds,” noted EHC PARTNERS consultant, “This measurement is no longer enough to adequately evaluate haemophilia treatments, we need new QoL tools to incentivize treatment improvements.” “However,” noted Thomas Sannié noted, “joint bleeds still happen! We need to ensure that novel treatments will prevent all bleeds and protect joints for a life-time for all patients. This will be real progress!”
Want to send an EHCard, a videogram or just wish EHC happy birthday for our year-long celebration (#EHCelebrate)? Visit https://www.ehc.eu/ehcelebrate/.