Европейский Альянс по тромбозу и гемостазу



European Thrombosis and Haemostasis Alliance Meeting 25 November 2020, Online Minutes

ATTENDEES ETHA

FIRST NAME

LAST NAME

NATIONAL SOCIETY

Anna

Falanga

ETHA Chair

Ingrid

Pabinger-Fasching

ETHA Chair-elect

Tom

Reiser

International Society on Thrombosis and Haemostasis

Louise

St Germain

International Society on Thrombosis and Haemostasis

Keith

Gomez

British Society of Thrombosis and Haemostasis

Mettine

Bos

Dutch Society of Thrombosis and Haemostasis

Grigoris

Gerotziafas

European Independent Foundation in Angiology/Vascular Medicine (VAS)

Ismail

Elalamy

French Society of Angiology

Bettina

Kemkes-Matthes

Germany, Austria and Switzerland Society of Thrombosis and Haemostasis

Sabine

Eichinger

Germany, Austria and Switzerland Society of Thrombosis and Haemostasis

Zsuzsanna

Bereczky

Hungarian Society of Thrombosis and Haemostasis

Erkin

Mirrakhimov

Kyrgyz Atherosclerosis Society

Per Morten

Sandset

Norwegian Society on Thrombosis and Haemostasis

Eugene

Roitman

Russian National Association on Thrombosis and Haemostasis

Lucia

Stanciakova

Slovak Society on Haemostasis and Thrombosis

Juan Carlos

Reverter

Spanish Society of Thrombosis and Haemostasis

Tomas

Lindahl

Swedish Society of Thrombosis and Haemostasis

Fionnuala

Ni Ainle

VTE Ireland

ETHA Secretariat

FIRST NAME

LAST NAME

ORGANISATION

Sture

Alne

ETHA secretariat

Molly

Clapperton

ETHA secretariat

Lily

Reisser

ETHA secretariat

WELCOME, INTRODUCTIONS, OBJECTIVES

  • As chair of the meeting, Anna Falanga welcomed the participants and introduced the agenda for the day. The key objectives of the meeting were to present the new chair-elect of the ETHA; to give an overview of the recent EU policy developments; to summarise the Alliance's activities since the last meeting in May; and to look forward to activities for 2021.

MINUTES, MEMBERSHIP UPDATES

  • The secretariat provided a brief summary of the previous meeting's discussions, which focused on ETHA members' clinical experiences of and research into COVID-19 and thrombotic events and the impact of the pandemic on ETHA activities.
  • The secretariat noted that there had been no change in membership since the last meeting.

ACTION: N/A

PRESENTATION OF THE NEXT ETHA CHAIR

  • Anna Falanga introduced new chair, Prof. Ingrid Pabinger-Fasching.
    • Ingrid introduced herself to the members: she has been working in thrombosis/bleeding disorders and has been part of the ISTH family for a long time.
    • Ingrid thanked the members for the vote and said that she is honoured to take over from Anna Falanga, thanking her for her involvement over the past two years.
  • ACTION: N/A

    RECENT DEVELOPMENTS OF RELEVANCE TO THE ETHA

    • The secretariat provided an overview of the update from EU institutions since May 2020. Overall, there is now much more momentum to address health at the EU level as a result of this year's experience of COVID-19:
    • European Health Union
      • There is now a stronger push for reinforced health collaboration at the EU level; as health is a national competence, this will need to come from the EU's existing areas of competence.
      • For example, this may lead to mandating the sharing of health data and expanding the role of existing agencies, such as the European Medicines Agency (EMA) and European Centre for Disease Prevention and Control (ECDC).
      • This idea is strongly supported by the French government, and may lead to the EU moving towards the US model - of having a stronger Food and Drug Administration (FDA)-style agency with increased capability to intervene on health matters.
    • EU4Health Programme 2021-2027
      • This is a specific plan of concrete actions on health, which has seen a dramatic increase in funding during the EU budget negotiations (although not as large as initially proposed).
      • There is a strong political agenda, and discussions on relocating strategically important resources back to Europe are prevalent.
    • Current status of Horizon Europe
      • In general, there is a divergence between the EU institutions' funding envelopes: as the European Council holds the 'power of the purse', a more conservative funding framework prevailed.
      • There is a high chance of delay due to a political stand-off over rule of law discussions.
    • Current status of EU Cancer Plan and Cancer Mission
      • There has been a delay to the publication of the Europe's Beating Cancer Plan (EBCP) - while this was not a surprise given this year's demands, this delay is likely to be due to disagreements within the institutions on the final text. A delay is now likely until Jan/February 2021.
      • Some cancer areas have been emphasised by MEPs - breast cancer, paediatric cancers. The understanding is that the EBCP's priority is on prevention measures: tobacco control, workplace exposure, chemicals etc, as this is where the EU is able to make a difference without interfering with national cancer plans. o For the Cancer Mission - roughly described as a funding envelope with a defined social goal - the funding is yet to be determined but expected to be in the ballpark of €500m- €1bn over a 10-year period.
    • Review of EU Blood, Cells and Tissues Legislation
      • This is a set of two regulations which inter alia govern how plasma for manufacturing of plasma-derived therapies and blood and blood components for transfusion must be collected and transported in Europe. These regulations have not been updated in almost 20 years, and there is now a political push for this review in light of recent technological and political developments.

    ACTIONS: N/A

    ETHA ACTIVITIES SINCE MAY 2020

    • The secretariat provided an overview of how plans have changed from SOW, given the impact of COVID-19 on Brussels landscape, including:
      • Scheduling virtual meetings; o Holding a Virtual Public Affairs webinar; and o Aligning with more active stakeholder groups in Brussels.
    • The secretariat presented the activities which the ETHA has completed since May 2020, including:
      • Consultation responses and regular monitoring
      • Policy positioning and advocacy
      • Monthly newsletter and social media
      • Cancer comorbidities coalition and Health First Europe
      • European Cancer Patient Coalition and European Cancer Organisation
      • Consensus Statement on COVID-19 and VTE
      • Public Affairs webinar in place of ISTH Congress meeting
    • Further details of these activities can be found on the meeting slides, which will be shared with members.

    POTENTIAL FOCUS AREAS FOR 2021

    • The secretariat opened the floor to discuss the health research priorities of the upcoming Horizon Europe programme, to identify areas in which ETHA members are working.
    • Of these research priorities, several were of interest to ETHA members. These are:
      • Staying healthy in a rapidly changing society
      • There is some overlap here with Anna's work in cancer - using thrombotic markers to understand if hypercoagulation can predict certain types of cancer.
      • Ingrid echoed Anna's statements: staying healthy in changing society has opportunities, as this could go into lifestyle factors, impact of sedentary behaviours (including surgery/recovery). This is a topic that most ETHA members are likely to be working on.
      • Per Morten Sandset said that he had been working on predictive models.
      • Tackling diseases and reducing disease burden
      • The secretariat noted that it is most likely that proposals relating to thrombosis fall under this heading.
      • Anna said that this area is interesting given her field, a view that is likely shared by other members.
      • Unlocking the full potential of new tools, technologies and digital solutions for a healthy society
      • Tomas Lindahl expressed his interest in a choice of treatment for patients. He said that individualising treatment to optimise patient outcomes should be stressed in research.
    • As a side point, Tom Reiser asked whether the ETHA should discuss developing relationships with the haemophilia community.
      • Anna said that keeping the Alliance separate from stakeholders working on haemophilia was an intentional decision at the beginning of the ETHA. This was due to lack of advocacy around clotting disorders, compared to substantial investment in bleeding disorders.
      • Ingrid said that VTE was also the focus of World Thrombosis Day (WTD) and that it is important to look at other areas - including haemophilia, bleeding disorders, and bleeding in patients with no cause. Research in this area has crossovers with innovative therapy areas, such as personalised medicine.
      • Ingrid has personal connections with members of the haemophilia community - e.g. Flora Peyvandi, President of the European Association for Haemophilia and Allied Disorders (EAHAD).
      • Keith Gomez agreed that there are areas where the ETHA could collaborate with the haemophilia community. For example, EAHAD has a Coagulation Factors Variant Databases project that collates genetic data on bleeding disorder genes. The thrombophilia genes would also benefit from similar support.
      • Keith also said that ETHA could think about work in genomics, given the added value of shared knowledge/data beyond country level.
      • Bettina Kemkes-Matthes said the ETHA should keep its focus on thrombosis rather than haemophilia. Although patients with bleeding disorders are relatively rare, there is considerable funding in this field - in comparison to the situation for patients with clotting disorders, which is relatively common but faces hardly any money for research in comparison.
    • Ismail Elalamy said that the ETHA should pay attention to potential conflicts with other societies, given that thrombosis is multifactorial and interconnected.
      • Ismail suggested keeping the focus on raising awareness in patient, clinical and political communities.
    • The ETHA secretariat then outlined potential approaches for ETHA activities in 2021 and invited the members to give feedback on which angle they thought the most important. These priority areas were: Raising awareness; Building champions; Strengthening our network; Improving visibility.
      • Anna and Ingrid both agreed that all approaches sounded good.
      • Ingrid said that raising awareness and building champions have worked well and that work should continue in these areas.
      • Ingrid said that activities around strengthening the ETHA network - such as inviting relevant societies or exploring internal networks - should not take too much time in comparison.
      • Mettine Bos said that the ETHA should continue to put thrombosis 'on the map' and increase understanding, and also keep up with key EU stakeholders in order to influence research programmes where possible.
      • Mettine asked whether to consider working with actors such as the European Haematology Association and European Society of Cardiologists.
      • Anna said that the secretariat had met with the European Society of Cardiologists before, and that the ETHA is considerably smaller in comparison.
    • The secretariat moved the discussion to the future of ETHA funding.
    • Louise St Germain said that it had been a difficult year for all organisations, hence the ISTH is looking for alternative funding streams in order to keep opportunities for the ETHA open. Louise asked members what they thought of a potential corporate membership model.
      • Mettine asked whether the ISTH had something similar. Louise said that the ISTH doesn't currently have an equivalent mode, but that the board is currently looking at it, particularly for the WTD campaign.
    • Lily Reisser noted that similar organisations typically hold a sponsors' meeting once a year, and that sponsors do not hold voting rights.
      • Louise said that it is very important that sponsorship stays separate from the ETHA agenda or objectives. There would be a clear framework for their contribution, and ideally there would be several corporate sponsors as this is preferable from a political standpoint.
    • Keith said that this model could work well. EAHAD has a similar structure and sponsors do not contribute to the agenda, instead they can grant funds for specific side projects.
    • Ingrid said that she would strongly support this. She said that funding for the ETHA may come from ISTH, but that this already comes from corporate pharmaceutical companies under the sponsorship of ISTH Congress.
    • Tomas said that the ISTH should think about small and medium-sized enterprises. He said that this is also politically attractive: as cooperation between research and SMEs tends to be viewed favourably by the EU.
    • ACTION: Following advice from the ISTH, the ETHA secretariat will put together a corporate sponsorship strategy and share this with the members via email.

      MEETING CLOSE

      • Anna thanked the secretariat for its support and handed over to Ingrid as Chair-elect.
      • Ingrid thanked Anna once again for her leadership, complimenting her political thinking, and strong network in Brussels and beyond, before closing the meeting.

      ACTION POINTS INCLUDED IN MINUTES

      RESPONSIBILTY

      DEADLINE

      ETHA secretariat to share the list of target societies with ETHA members. Members will share any contacts with the listed societies for the secretariat to follow up.

      ETHA secretariat / members

      Ongoing

      ETHA secretariat to continue conversation with members on ongoing research via email for the purpose of sharing information about clinical trials.

      ETHA secretariat / members

      Ongoing

      ETHA members to share keywords relating to their research for secretariat to use to monitor calls for proposals.

      ETHA members

      Ongoing

      Following advice from the ISTH, the ETHA secretariat will put together a corporate sponsorship strategy and share this with the members via email.

      ETHA secretariat

      December

      2020