EHA 2024

July 8, 2024

From 12th to 16th June, ALAN attended the European Hematology Association (EHA) 2024 congress, held in Madrid, Spain. Below is a summary of the activities in which ALAN took part, in addition to meeting with our members, sponsors and with the medical community.

We are also reporting on the key sessions and latest advances. Check here

ALAN Members and Supporters meeting

Slides presented –> ALAN_EHA 2024_meeting

Poster presentation

EHA24 poster presentation, with special focus on the Global Study on Patient-Reported Experience of Being Diagnosed with Leukemia (followed by a Caregiver Experience and UK-specific study). The data gathered by the the global leukemia networks (CMLAN, CLLAN and ALAN) through their member organisations are a powerful proof of value of collaboration among patient support groups regardless of their outreach of activities. For some of the organisations operating in small but motivated patient populations the survey has brought valuable data they could not have effectuated alone.

You can download the posters from here.

Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom,

Patient-Reported Experience of Being Diagnosed with Leukemia: A Global Study,

Disease and Treatment Burden in Patients with Leukemia: Family Members / Partner Perspective,

EHA Patient Advocacy Committee meeting

All of the patient advocacy committee (PAC) members represent a different area of hematology and met during EHA2024 to discuss involvement of the PAC in EHA activities. Great to be joined by the President, Past President and President Elect.

EHA Community meeting

EHA has dedicated an entire evening to the importance of patient advocacy.

We heard on the panel ‘one size does not fit all’ when it comes to delivering information to patients and caregivers. And we hope this message and inclusion of advocates is heard loud and clear by all other research and clinical conferences.

And that support to patient organisations is made easier, without having to jump through massive time consuming hurdles.

And whilst at it… another URGENT call to involve the patient voice at the earliest stage of a potential drug development. People have been doing the same, but expecting a change.

Collaboration Plaza

Patient advocates’ networking floor is framed by the “Collaboration Plaza” where each umbrella organisation or network can display their print-outs and can gather for meetings with visiting healthcare professionals and partners. Given the global scope of the networks, this becomes very important as there aren’t many opportunities for in-person meetings of membership spread over the continents.

EHA Patient Joint Symposium and more

Prepared by Jana Pelouchova.

EHA Patient joint symposia form an integral part of the EHA Congress with mandatory attendance for patient advocates who have received scholarship for EHA 2024. However, the attractiveness of the topics, speakers’profiles and discussion and networking opportunities would bring audience to the room in any case! The first session focused on the European healthcare legislation, in particular on defining the UMN (Unmet Medical Need) under the bright moderation of Kostas Stamatopoulos, MD Director of CERTH Research institute in Thessaloniki. Quick QR code survey among the audience proved about a third of participants were not at all familiar with the EU health legislation. Focusing strictly on the unmet medical need, the discussion from the audience proved if we don’t take it simply as a slogan and fill it with meanings, then it becomes very personalised.

Indeed, the answers varied from lack of management strategy to improve the situation – to- leading a healthy life.

Opening speaker Maria Cavaller Bellaubi of EURORDIS has disclosed other elements to consider when approaching unmet medical needs, such as ensuring the right modulation of incentives for market exclusivity and joint procurement. Even with no objective definition of unmet medical need, regulators, clinicians and patients have no problem identifying them! Another question raised was the distinction of unmet medical need versus High unmet medical need. EMA will be selecting the criteria, patients will be involved in discussion! The recommendation goes to ensuring a dialogue taking place at a very early stage, on a specific disease, in a multi-stakeholder format including patients, ERNs’ clinicians, regulators, HTA experts and payers.

Tina Taube, of the EFPIA has highlighted key recommendations: incorporating PROs, collection of clinical data in Real World Registries and advocating for PROMS codified with orphan codes.

On which conditions can we elicit PROs? Definitely not one size fits all diseases.

Orphanization of diseases was an idea brought by Slovenian payer perspective , Momir Radulovic: Evolving medicines from one indication to TOP 5 selling drugs.  “Now 15 indications in diseases that used to be orphan designation”! His presentation highlighted the fact that centralised products don’t come to small countries. His main message goes for solidarity and political commitment.

In view of the interaction from the audience by means of instant QR code surveys and lively discussion, the spirit of the session supported the need of multi stakeholder collaboration and discussion on major societal, health and political issues.

The second session’s topic was Fair pricing – Does the value of new medicines in hematology justify the high price? chaired by prof Frank Leebeek of the Erasmus MC, Rotterdam. He pointed at the challenges of aging population and extension of indications. In the Netherlands, no CAR-Ts are available for multiple myeloma patients unfortunately! Prof. Carin Uyl-de Groot of the Erasmus University in Rotterdam has presented the HTA perspective: potential solutions and future direction by Pay per Performance. How to determine the value is a also a role fot patients! Balanced approach is needed, also to keep up the infrastructure for clinical trials in hospitals.

Prof. Manoela Monova of the Medical University in Sofia, Bulgaria has pointed at the examples of second multiple myeloma treatment data from clinical trials versus clinical practice.

Patient representative Maria Piggin of the Global PNH Alliance was presenting on the EuroBloodNet Survey 2023/24 dealing with  the availability versus accessibility of drugs. The concept of GDP based pricing was called for. Also the needs of stakeholders such as industry, patient organisation and healthcare professionals (including education of future HCPs).

 EHA Patient Communication

“We are not responsible for the news we give. We are responsible for the way we deliver it.” Dr Tobias Steigleder from Universitätsklinikum Erlangen and Julia Diaz Fonte from Asociación Española contra el Cáncer. We could not agree more!

There was a dedicated session on the patient-doctor communication, by a Workshop on Shared Decision Making, performed by the team of dr. Christina Karamanidou of the INAB Research Centre, Greece. Regular patient sometimes knows very little of what is the meaning of “shared decision making” while experienced patient advocates of the ALAN network like Sophie Wintrich, who was on the panel, have a very clear opinion and could modify the questions and recommendations to level-up the workshop (considered very basic by a number of participants). The need of further follow-up on this type of workshops is clearly identified and let’s hope it would be a collaborative effort of both onco-psychologists and patients!

EHA SWG on Quality of Life

Involvement goes beyong engagement and is relevant and efficient. It has potential to enhance the quality and efficiency of clinical trials.

Slides presented : ALAN – Qol Session

Some words from Elo Mapelu, ALAN steering committee member and first time attending EHA: 

The EHA congress focused on the latest advancements in the diagnosis, treatment, and management of hematological malignancies, as well as cutting edge research and development of new therapies and interventions. World-renowned clinicians, researchers and patients’ advocates presented their work, fostering collaboration and discussion. There was no shortage of sessions to attend, since at any time there were multiple, stimulating presentations, each one just as good and informative as the next.

The exhibition area provided an opportunity for close interaction with the pharma industry, while the posters presentation made it possible for in depth understanding of the various projects and programs aimed at improving the care of blood disorders patients all over the world.

The Congress in general, provided for an opportunity to network, meeting peers in advocacy from various organizations in the different parts of the world. Going forward, it will be more productive to invest more time in networking with industry players as well as advocates, in future events.