ALAN reports back on Patient, Family and Donor Day at virtual EBMT 2020

September 7, 2020

From 29th August to 01st September 2020, the Acute Leukemia Advocates Network (ALAN) attended the 46th Annual Meeting of the EBMT.

Samantha Nier, Network Manager reports on the Patient, Family and Donor Day. This comes in addition to what was posted on social media (

Agnès Huet-Vicens, 57 (Paris, France) was telling us about her battle with myelofibrosis. After her Bone Marrow Transplant (BMT), she experienced acute graft-versus host disease (GvHD), then chronic GvHD and then sclerodermy skin disease. She said “GvHD brought a new fight in my life. Corticosteroids are part of my life now”.

She experienced many side effects such as oedema, metabolic disorders, adrenal insufficiency, depression, neurologic disorders, and unfortunately, much more.

“GvHD brought a new fight in my life. Corticosteroids are part of my life now”

Agnès Huet-Vicens, patient

She gave very powerful messages to the audience:

  • Never give up !
  • Trust your hematologist –> he is a cornerstone of your treatment
  • Don’t read too many things on Internet–> internet is not your friend – Ask questions to your nurse and hematologist instead !
  • It is important to continue to work
  • Don’t speak with too many people –> we all have different experiences.
  • Role of family is crucial –> ask them to come with you in consultations, they hear and understand different things !
  • Support bone marrow donation

Pr Regis Peffault de Latour then gave an overview of Haematopoietic Stem Cell Transplantation (HSCT) and GvHD. His first message was that it is possible to go through HSCT without experiencing GvHD : 10-15% of patients will never experience GvHD while (while 85-90% will experience it. Even if there are some predictive factors (age, patients with refractory diseases, female donor / male recipient, peripheral blood > marrow > cord blood, HLA mismatch and unreleated BMT), it is still not known why some patients do not experience GvHD.

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In HSCT, donor T-cells are not able to recognize body and disease of the recipient. The aim is to find the balance between graft versus leukemia (GVL) effect  (to eliminate cancer cells) and GvHD effect (toxic and no needed).

Latest research aims to avoid the use of steroids as reference treatment as many new compounds are being investigated in first and second line acute and chronic GvHD.

Pr Peffault de Latour concluded by saying that “The most important is a team work with various specialists and coordinated by the hematologist to take the best decision for the patient. Each patient is different !”

“We have to stop using steroids!”

Pr Regis Peffault de Latour, physician

Anna Barata, then talked about the psychological aspects of treatment. In HSCT, many morbidites keep being reported by patients, psychological distress being the most reported one, all across the contiuum from hospitalization, to early survorship and late survivorship.

Those psychological symptoms play a role in HSCT outcomes: slower physical and psychological recovery, longer hospitalization, GvHD, bad adherence to treatment, worse QoL, etc.

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There are challenges in addressing psychological unmet needs: patients needs are broad and change over time. Also, unlike patients receiving active treatment, survivors are seen less frequently. Anna Barata also mentioned “there is a need for improved physican-patient communication, to better understand the needs”. It is also important that patients have access to reliable and trustful source of information.

“It is important to prepare patients and caregivers about what to expect when going through HSCT”

Anna Barata, Researcher Department Health Outcomes and Behavior

As a last presentation of the session, Pr Jurgen Kuball talked about CAR T-cell therapy, a recent and promising technology

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Also include a stimulation phase before being given back to patient.

“CAR T-cell therapy offer new opportunities “

Pr Jurgen Kuball, physician


In addtion, many other topics were discussed and here is a snapshot:

  • Matched siblings vs. haploidentical in AML (report available)
  • How does MRD impact outcome of stem cell transplantation in AML? (report available)
  • COVID 19
    • Impact of COVID-19 in hematology
    • Hematological therapies at the crossroad of the COVID-19 pandemic
    • Lessons learnt from COVID-19 – continuity of care, how to ensure provision of stem cells, cryopreservation, transport
  • Nurses
    • Steroids – the hematology bad boys. Love them, loathe them, can’t live without them
    • Optimizing patient’s CAR T-cell therapy journey
    • Nurses at the forefront of patient survival of severe hepatic VOD
  • Pharmacists
    • Pharmacotherapy in HSCT,
    • Management of AEs
  • Antibody therapy in acute leukemia: understanding clinical consideration for use in conjunction with HSCT
  • Improving outcomes: transplant and beyond in patients with high-risk AML
  • Therapies to bring resistant acute leukemia into HSCT
  • Maintenance of complete remission in AML
  • Targeted therapy for adult ALL: new horizons in the setting of allo-HSCT
  • Bone marrow failure: from diagnosis to treatment in 2020
  • Immune therapy beyond CAR T-cells
  • New developments in the field of CAR T cells
  • Moving CAR T-cell therapy in Europe
  • Status of NGS for indication and monitoring in stem cell transplantation 2020
  • GvHD
    • Use of ECP
    • Steroid-refractory GvHD
    • Unusual GvHD manifestations
    • Reduction therapeutic toxicity in GvHD
  • Pediatric

Also find the complete agenda here:

As we couldn’t attend all the sessions, if there is a particular one you would like us to provide some information on, please feel free to email Samantha . We would listen the session for you and provide you with a report.

Additional resources

Twitter: #EBMT20Virtual