ALAN reports back on Patient, Family and Donor Day at virtual EBMT 2021

March 21, 2021

From 14 to 17th March 2021, the Acute Leukemia Advocates Network (ALAN) attended the 47th Annual Meeting of the EBMT.

Samantha Nier, Network Manager reports on the Patient, Family and Donor Day.


One year later, it is still not possible to avoid the COVID-19 topic. 

Everyone would agree to say that the first wave was like a tsunami and nobody knew how to handle it. It impacted everyone, with on the forefront physicians, nurses, patients and patient advocates, by adding an additional layer of fear. 

What is the profile of hemato-oncology / transplanted patients most at risk of COVID? 

– Increased age (>50 years) and poor performance status

– Early after transplant is worse (<100 days [even <1year]) has worse outcomes

– Other comorbidities e.g. overweight, AML patients have more risk than CML, intensive chemotherapy, etc. 

– No difference observed with autologous or allogenic transplant as well as no increased risk because of immunosuppression. 

There is no safety issue with the 4 approved vaccines in Europe, and the same goes with the other vaccines. Hemato-oncologic / transplanted patients can receive any of those available vaccines in their countries as long as they are not live-attenuated or replicating viral-vector. 

However, since those patients have lower response rate than the general population, if possible, they should better select the vaccines with the highest efficacy in prevention of COVID (>85%). 

In any case, the message is unanimous: “if as a patient, you are offered vaccination, say yes and do it as soon as possible”. Also, keep respecting the measures (masks, social distancing, washing hands, telemedicine, etc.).


Post-transplant care

The transplant journey is very difficult, associated with a wide variety of physical and psychological complications even many years afterwards.

Everyone should receive the care and support they need after a stem cell transplant, for as long as necessary and no matter where they live – but evidence shows that this is not always the case. Indeed, even if guidelines for management of late effects exist and despite efforts, no minimum standards exist for the care that patients should receive after their transplant.

A UK survey revealed that

– Psychological assessment is only undertaken in only 1/3 of patients

– Almost all centers had set protocols to monitor patients

– But only few centers had multidisciplinary meetings to discuss patients with long term problems following transplant.

– Lot of centers have no access to specialist services e.g medical specialists, nutritionists, physiotherapists, fertility specialists, etc. 

The Anthony Nolan report, ‘A pathway for post-transplant care’, aims to help address this problem by describing the services and support packages that are central to patients’ recovery. Find out more:

One of the complication of transplantation is GvHD, which has a huge impact on patients and their families and which is still very difficult to manage despite new medical advances.

There are other complications linked to oncological treatment as shown below.

Unfortunately, infertility post-treatment is another consequence of transplantation. And the advice given by patients who went through this journey is to talk – “Be proactive and ask !”. It exists fertility options that need to be discussed as soon as possible with the medical team.

This also concerns pediatric patients and various options are available to be discussed with the medical team (that can vary country to country). Multidisciplinary teams should be set up in the cancer centers to resolve the practical and ethical issues surrounding fertility in young cancer patients.


New developments – Could CAR T therapy cure cancer patients ?

CD19 is mainly expressed in lymphoma and ALL. 

The procedure is  feeling “more like a Star Wars scenario than a medical procedure” – it is a heavy, long and full of uncertainties process. 

And this journey is also associated with side effects:

And requires collaboration

Still a lot of questions are unanswered


New developments in auto-immune diseases


Donor Registry: “A lifesaver”

One important number: 38 million of donors worldwide ! 

The pandemic impacted the registries: 

But solutions were put in place to ensure registry activity could continue. 


Pediatric transplantation: how does it work?

It is considered as one of the more complex procedure and needs high expertise in the field. Research started in the middle of last century but nowadays the most important is to improve cure rates with less side effects. 

It is a long and complex process. 

And many questions remain unanswered for example on conditioning, on the use of graft versus leukemia effect and on the use of CAR-T cell therapy.

The message given to the audience by physician and parents were

-You have to trust the medical team, have very sincere dialogue, talk  about doubts and questions. It is a collaboration between the medical team and parents.

-You have to be prepared that hospital becomes your home for a while

-Psychological support is important

-Many decisions to be taken every day by medical team. Each transplant is different. You have to be confident your child is in good hands.

-Each phase of the process brings different questions. It is like having a a monster in your head and the constant fear for your child.

-Avoid feeling of guilt.


Gathering data and shaping research via patient inputs

There are many ways patients can be involved and shape research : 

Big data – HARMONY: check here for more information


Standardisation and validation – SISAQoL : check here for more information

Clinical trials and real world data registries

Evidence based advocacy : you can only serve a group of patients if you are connected  and if you know their needs, experiences and preferences. An opinion is an opinion but an opinion based on data is an evidence. Be factual ! 

Be sure that serving your patient group needs, health improvement and life quality always remain your higher goal and the endpoints to achieve !  

Other topics

Many other topics were discussed during those days (e.g. COVID-19, GvHD, new developments in HSCT, CAR-T cell therapy, etc.) and you can 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 #EBMT21 @TheEBMT @VJHemOnc