Join our webinar on 2nd December 2020, 3pm CET

ALAN is running a free webinar to provide practical guidance on drug development.

In this webinar, you’ll learn about:
– Drug development process
– What is the rationale to initiate drug development?
– Development milestones from drug discovery and research, to pre-clinical and clinical

Date: 2nd December 2020

Time: 3pm CET / 2pm UK time

Presented by Samantha Nier, ALAN Network Manager

Registration: https://zoom.us/webinar/register/WN_ihwqsiOSRBmjMlQtJpzk8Q

After registering, you will receive a confirmation email containing information about joining the webinar.

Feel free to share with any others in your organisation or who you know who would benefit. Looking forward to seeing you all on 2nd December !

Join our webinar on 9th December 2020, 6pm CET

ALAN is running a free webinar to provide practical guidance on policy and influencing.

Date: 9th December 2020

Time: 6pm CET / 5pm UK time

Guest speaker: Andy Jones, Director at Think Advocacy Ltd.

Registration: https://us02web.zoom.us/webinar/register/WN_jqTCa346TzGkL-Bb3IOyGw

After registering, you will receive a confirmation email containing information about joining the webinar.

Feel free to share with any others in your organisation or who you know who would benefit. Looking forward to seeing you all on 9th December !

ALAN reports back on ESMO congress

The Acute Leukemia Advocates Network (ALAN) attended the European Society for Medical Oncology (ESMO) congress which took place virtually over a week end in September 2020 and one week end in October 2020.

ESMO is the leading professional organisation for medical oncology. With more than 25,000 members representing oncology professionals from over 160 countries worldwide, ESMO is the society of reference for oncology education and information.

ESMO’s core mission is to improve the quality of cancer care, from prevention and diagnosis all the way to palliative care and patient follow-up. It is to educate – doctors, cancer patients and the general public – on the best practices and latest advances in oncology. And it is to promote equal access to optimal cancer care for all patients.

Patient Advocacy sessions topics and discussions

Survivorship is not survivorship without quality of life

Number of cancer survivors is increasing and quality of life needs to be enhanced. Patients want to be part of decision making “Nothing about me without me!”

Definition of survivorship

Quality of life is recognized by all stakeholders to be very important, however is rarely incorporated in patient treatment and routine care.

Survivorship is everyone ‘s work. Services can be build to address growing needs from patients, including quality of life and development of support care for patients.

Few initiatives were presented to the audience, such as the platform called www.talentconnector.nl which is a matching app for recruiters and cancer patients who are looking for a job in the Netherlands and the multidisciplinary approach used in Spain to challenge change. Both initiatives are evidence based.

The cancer journey: The importance of getting the right physical and mental support

Pain occurs in more than 50 % of patients but is not the only impact that cancer may have :

Holistic support should be provided to each cancer patient

Pre-habilitation at the time of diagnosis or relapse is as important as post-treatment rehabilitation

Rehabilitation is defined as “a set of measures that assist individuals, who experience or are likely to experience disability, to achieve and maintain optimum functioning in interaction with their environments” – WHO, 2011.

Goal of rehabilitation

In different studies, it has been reported that oncologists underestimate patients problems such as side effects, functional problems etc.

Who should get rehab ?

Improving cancer patient’s mental health: The “War on cancer” project

This project is born from a personal experience and evidence: cancer inflicts trauma, causing 22% of cancer patients to experience PTSD and 25% to experience clinical depression. There are different coping mechanisms to that:

  • Journaling
  • Social support
  • Helping others.

The War on Cancer app include all this and aims to improve the mental health of everyone and anyone affected by cancer. On the app you’ll be able to connect with people from all over the world with different types of diagnosis, This is the social network where your stories and experiences can make others feel better. A place where sharing your experience helps make others feel like they belong. A community where you’re never alone because we are fighting cancer together. A place to make new friends and connect with others that understand what you are going through.

Link to the app: https://apps.apple.com/us/app/war-on-cancer-social-app/id1317767189

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In addition, we attended some general sessions and can share more information if you are interested:

  • Maximizing quality of life: definition of “hope”, importance of appropriate support, importance of personnalized clinical follow up, importance of clinical trial design (relevance of traditional clinical endpoints, choice of endpoints, methodological assessments etc.)
  • Challenges in managing an aging population of patients with cancer: prehabilitation for surgery and beyond, why we should continue pushing for prehabilition, balancing benefit, harm and patient priorities in older adults with cancer
  • AYA: adults or children?
  • Supporting informal carers: supporting parents of children who have cancer, informal Caregiver Support at home (InCaSu@home project), Lived experience from caregiver
  • Phase I clinical trials: What does this mean for our patients?
  • Evolving Cancer Nursing role
  • Oncology care during Covid-19: How does it affect our patients? (patient experience according to patient advocates and patient-reported experiences of cancer care related to the COVID-19 pandemic)
  • Cancer policy: What it is and why you cannot work without it ? Connecting the dots: The EU plan to beat cancer, EU cancer policy, Health equity

Also find the complete agenda here: https://www.esmo.org/meetings/past-meetings/esmo-virtual-congress-2020/programme

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 samantha@acuteleuk.org . We would listen the session for you and provide you with a report.

Additional resources

Twitter: @myESMO

First Acute Leukemia Global Summit

On 26th September 2020, ALAN held its first (and virtual ) Acute Leukemia Global Summit.

With approximately 100 registrants and attendees from all over the world, the global summit was dedicated to the development of its members as patient advocates and dealt with important topics for acute leukemia patients and carers.

The program featured renowned acute leukemia experts as well as other medical specialists and advocacy leaders from around the world:

Zack Pemberton-Whiteley, ALAN Chair welcomed attendees and opened the global summit, followed by Samantha Nier, ALAN Network Manager who gave an overview of ALAN’s plans and future activities.

Esther Oliva, MD at Grande Ospedale Metropolitano Bianchi Melacrino Morelli (Italy) and Co-chair of the EHA SWG Quality of Life and Symptoms and Adele K. Fielding, Professor of Haematology/UCL Cancer Institute (UK) guided us through the hot topics and latest advances respectively in AML and ALL.

The medical session was followed by an advocacy session on “patients’ involvement in access decision” during which Giora Sharf (founder of Flute of Light (Israel) and co-founder of CML Advocates Network) and Zack Pemberton-Whiteley (CEO of Leukaemia Care UK and Chair of ALAN) gave their opinion from a patient perspective, followed by Adele K. Fielding Professor of Haematology/UCL Cancer Institute (UK) who gave her perspective as a physician. We then welcomed Pauline McGuire, Principal Pharmaceutical Analyst from Scottish Medicines Consortium and Francesco Pignatti from EMA who both shared their views from payers and regulators’s perspective. The presentations were followed by a panel discussion.

You can also find the recording of the global summit here

We are looking forward to seeing you next year for the second Acute Leukemia Global Summit, hopefully in person this time !

More from EHA: latest Acute Leukemia scientific developments

“With the explosive development of genetic information and new targeted and non-targeted therapies, it’s not surprising that this year’s EHA25 contains a great number of important submissions regarding biological mechanisms, diagnostics, and new therapies.”

Gunnar Juliusson, member EHA25 Scientific Program Committee Advisory Board.

Not to be missed:

ALAN reports back on Patient, Family and Donor Day at virtual EBMT 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 (https://twitter.com/AcuteLeuk)

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.

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.

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

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

“CAR T-cell therapy offer new opportunities “

Pr Jurgen Kuball, physician

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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: https://www.professionalabstracts.com/ebmt2020/programme-ebmt2020.pdf

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 samantha@acuteleuk.org . We would listen the session for you and provide you with a report.

Additional resources

Twitter: #EBMT20Virtual

https://www.vjhemonc.com/event/EBMT-2020/?dm/

https://www.vjhemonc.com/subject/acute-myeloid-leukemia/?dm

/https://www.vjhemonc.com/subject/acute-lymphoblastic-leukemia/?dm/

World Leukemia Day is approaching ! #WLD20

September 4th is World Leukemia Day, an awareness day that has been designed by Acute Leukemia Advocates Network (ALAN)CLL Advocates NetworkCML Advocates Network and Leukaemia Care to raise awareness of leukemia and the signs and symptoms.

There are online resources available including all social media artwork as well as informative graphics to share on the run up to the day and on the day itself, you can find all the information and downloads via this link: www.worldleukemiaday.org.

This year’s focus is to raise awareness in the symptoms of leukemia. Symptoms of leukemia can be vague and non-specific. There are 6 common symptoms experienced by all leukaemia patients prior to diagnosis. These are :

Leukemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your healthcare professional sooner for a blood test.

Join us on 4th September to raise awareness in leukemia, we count on you !

#WLD20

#BeLeukemiaAware

Acute Leukemia Global Summit: Registrations are open !

We are looking forward to our first Acute Leukemia Global Summit on the 26th September 2020, 12 to 4.15pm CET. Due to global pandemic, it is going to be a virtual meeting.

ALAN has worked to ensure that the global summit includes topics of importance to the acute leukemia patient community and provides a unique opportunity for participants to share experiences and best practices. We hope that as a result of this meeting patient groups globally will improve their capacity to meet the needs of their constituents and optimize their advocacy activities. 

REGISTRATION

https://zoom.us/meeting/register/tJUpc-6srD8sHd2SB6NQ6SoxjQX1doklHGKh

CONTACT INFORMATION

In case of questions, you can contact Samantha Nier, samantha@acuteleuk.org and/or by phone /What’sapp/Telegram +41 79 943 26 81

4th September is World Leukemia Day #WLD20 !

September 4th is World Leukemia Day, an awareness day that has been designed by Acute Leukemia Advocates Network (ALAN), CLL Advocates Network, CML Advocates Network and Leukaemia Care to raise awareness of leukemia and the signs and symptoms.

There are online resources available including all social media artwork as well as informative graphics to share on the run up to the day and on the day itself, you can find all the information and downloads via this link: www.worldleukemiaday.org.

There are four ways that people can get involved on the day!

1. Share your leukemia story

Encourage others to share their leukemia story on social media and use the hashtags #WLD2020 or #WorldLeukemiaDay.

More information is available at www.worldleukemiaday.org

2. Share a ‘spotty selfie’

Dig out your spotty clothes and share your ‘spotty selfie’ on social media with the hashtag #WLD20 on September 4th to show your support.

3. Spread the word

Help raise awareness of the symptoms of leukemia by using our social media graphics and sharing these across your social media platforms along with the hashtags #WLD20 #worldleukemiaday.

All graphics are available via www.worldleukemiaday.org

4. Use our World Leukemia Day Facebook frame

This will only be available on September 4th

If you need any extra information, downloadable graphics or issues please email hello@worldleukemiaday.org

Join the joint ALAN and Share4Rare webinar — Patient advocates fostering research in oncology

On September 2nd , at 6pm CET, a new Share4Rare webinar will take place with the aim to present the acute lymphoblastic leukaemia research project.

One of the pillars of Share4Rare is to enhance collaborative research. For that purpose, at the end of 2019 the platform started piloting four research projects concerning several groups of rare diseases. One of these projects is focused on investigating the natural history of paediatric ultra-rare tumours and another one on analysing long-term side effects of paediatric acute lymphoblastic leukaemia (ALL). The latter will identify and analyse the side effects caused by the ALL therapies 3 years after remission through the information provided by patients and caregivers in specific questionnaires. This study is being conducted thanks to the collaboration of the CLOSER project, the Acute Leukaemia Advocates Network (ALAN), the Josep Carreras Leukaemia Foundation and several patient associations.

In this webinar, the speakers will present the ALL study and will place a strong emphasis on the importance of collaborative and patient-driven research and on the role of patient advocates in research in the oncology setting. Surely a great chance to learn from the experts and get involved in international research initiatives!

Agenda   

  • Welcome notes 
  • Share4Rare platform: improving the life of patients with acute lymphoblastic leukaemia 
  • Advocacy in oncology: how to contribute to patient centric research

About the speakers    

  • Samantha Nier, Network Manager of Akute Leukemia Advocates Network (ALAN) 
  • Begonya Nafria, Coordinator of Share4Rare
  • Bettina Ryll, Founder and Chair of the Melanoma Patient Network Europe  

Information

This hour-long webinar will take place on Wednesday 2nd September, 18:00 CEST. Those interested can register here. If you are interested in boosting patient-driven oncological research, do not miss out this great opportunity.

See you at the webinar!