Every 1 September, the global CLL community unites to raise awareness about chronic lymphocytic leukemia (CLL) and give those affected by a diagnosis of CLL a much needed voice. On World CLL Day (#WCLLD) we come together to improve understanding of the vulnerability of CLL patients and the challenges involved in living with CLL. The 2023 Campaign Toolkit will be available soon – there will again be lots of things you can do in the lead-up to the campaign, as well as joining us on the day!

On this World CLL Day, under the hashtags #WCLLD23 #DontWalkAlone and #MentalHealth we focus on the mental health challenges of those living with CLL. Due to a high degree of uncertainty given the challenging nature of the disease, mental health issues and the impact of living with a chronic condition such as CLL are very real. Managing the immune challenges the condition can bring results in considerable emotional and psychological distress which was further exacerbated during the pandemic. We also want to spot a light on the particular challenges that CLL patients encounter during the full pathway of their disease – specifically during Active Monitoring (“Watch & Wait”). Alongside appropriate care, having access to reliable resources and connecting with others can help patients live better with this chronic, incurable cancer. On this #WCLLD23 we make a common stand for not leaving patients alone with mental health issues – nobody should walk alone!

Join us and help spread the message in the lead-up to World CLL Day 2023 and on 1 September 2023!

On the dedicated Word CLL Day website you will soon find downloadable materials, online resources as well as information on how you can get involved and what you can do in the lead-up to #WCLLD23.

Please spread the word and let other stakeholders and your clinical community know about World CLL Day and ask them for their active participation by building WCLLD into their communication plans!

World CLL Day is a great way of kicking off Blood Cancer Awareness Month for the CLL community. It will help build momentum for the CLL community on World Leukemia Day on 4 September and World Lymphoma Awareness Day on 15 September.

THANK YOU FOR JOINING WORLD CLL DAY 2023 AND HELPING SPREAD THE MESSAGE OF AWARENESS!

From 08-11 June 2023, the EHA Hybrid Congress took place for the 28th time. Frankfurt / Germany was chosen as the city to host this year´s congress. CLLAN was present with a total of 8 representatives (6 Steering Commitee members + its 2 staff members).

EHA is known as the premier hematology congress in Europe and offers a congress program covering every sub-specialty in hematology and the opportunity to network with experts from all over the globe. The educational and scientific program highlighted state-of-the art clinical practice, the latest findings, and innovations in hematology research. Here are some key takeaways in the area of CLL:
 

• CLL12 long-term results confirm that Active Monitoring (“Watch & Wait”) continues being the right strategy
• Clinical trials confirm efficacy of non-covalent BTK inhibitors in those patients that are resistant to covalent BTK inhibitors
• There are new drugs in the pipeline such as BTK degraders and bi-specific antibodies
• Clinical trial with CAR-T plus Ibrutinib confirms efficacy and long-term remissions
• Overall this year’s EHA was a continuation of developments and trials. It confirmed that existing treatments work and that new ones are on the horizon.

The congress also provided participants with the opportunity to attend satellite programs, Updates-in-Hematology and to visit the exhibition area where the patient advocacy community again had a joined booth at the (“Advocacy Hub”). Furthermore, EHA traditionally provides a good opportunity to meet our friends and patient advocacy colleagues as well as our esteemed industry partners. Thanks to all for taking the time to connect with us in Frankfurt despite everybody´s busy schedule!

Worth mentioning as well that CLLAN had submitted an abstract to EHA titled “Identifying inequities in support – Global Survey of Patient Organisations delivering support services for CLL Patients” that was published in the online Abstract Book (see under CLL CLINICAL), a supplement of HemaSphere (EHA’s official journal), the EHA Library and the Congress platform. Our friends from Acute Leukemia Advocates Network (ALAN) presented a poster (P1688) on the Leukaemia Patient and Carer Experience Survey, a project done jointly with CLLAN and CML Advocates Network (CMLAN).

Thanks to our vice-chair, Pierre Aumont, CLLAN was also again represented at the EHA Patient Advocacy Committee (PAC), a committee that – among other tasks – is in charge of co-organizing the EHA-Patient Joint Symposium which this year tackled the topics of drugs evaluation and reimbursement criteria. The EHA-PAC meeting offered a good opportunity to engage with the President, Past President and President Elect on what more can be done to include the patient voice across EHA. EHA-PAC members are involved in important committees such as the Scientific Committee and the European Affairs Committee. All of the above proves how much EHA values the patient voice and of how over the past years it has more and more turned into a truly patient-friendly association, a fact that is highly appreciated not only by CLLAN but by the wider patient advocacy community.

Last but not least, after years of virtual collaboration, the attending members of the CLLAN Steering Committee and two team members were finally able to meet in person. The much-anticipated CLLAN Team meeting provided an opportunity for attendees to engage face-to-face and delve into important discussions regarding the network’s future plans. This opportunity breathed new life into the network’s endeavours. With enthusiastic discussions on “hot topics” and strategic planning for the future, the CLLAN Team meeting reinforced the unwavering commitment of its members to improving the lives of CLL patients worldwide. Through their collective efforts, the network will continue to champion the cause of CLL advocacy, ensuring that no patient faces the challenges of CLL alone.

THE FULL CONFERENCE REPORT IS STILL UNDER DEVELOPMENT. Please look out for our next newsletter, updates on www.clladvocates.net and information shared on our Social Media channels!

With date of 31 May 2023, the International COVID-10 Blood Cancer Coalition (ICBCC) released a revised version of its Statement which discusses helping patients help themselves so they can re-engage with the world. In their joint statement, more than 70 researchers, clinicians, patient organisations and medical societies urge stakeholders to consider IC blood cancer patients in health policy decisions.

Following on from the previous ICBCC Joint Patient Impact Statement launched in 2022, in May 2023 ICBCC proudly published an updated Patient Impact Statement that can be accessed here. The current list of endorsers is available here. Printouts of the statement and our latest ICBCC flyer were distributed widely and promoted at this year´s EHA. As part of a fund-raising event, signatures of congress attendees were collected through a digital signature board, with 10 EUR per signature being donated by a sponsor to support the work of the coalition.

In terms of next steps, CLL Advocates Network (as the organisation running the ICBCC Secretariat and coordinating the workflows) is currently working on a toolkit with educational materials for patient and HCP education to help both groups better manage the daily struggles of immunocompromised patients in the COVID-19 endemic phase. The toolkit will consist of a booklet, a social media campaign and short videos with key messages and recommendations. Materials will be available in different languages.

For more information on ICBCC, please visit our dedicated website at https://www.icbcc.info.

On Saturday 10 June, CLL Advocates Network and AstraZeneca hosted a “Patient Advocacy Exchange – Compromised: Uncovering the immune-related challenges facing people with CLL”.

This hybrid event brought together patient advocates, representatives of CLL concerned patient advocacy groups, members of clinical community and those with an interest in supporting patients with CLL.

90+ attendees from 60+ countries, including in person and virtual attendees, attended the meeting to:

• Discuss insights and recommendations from “Compromised: Uncovering the immune-related challenges facing people with chronic lymphocytic leukaemia”, a White Paper co-developed by CLL Advocates Network towards reshaping policy and practice.
• Collaborate with patient advocates, patient advocacy organisations and the clinical communities to prioritise recommendations and associated call to actions.
• Explore the emotional and mental health impacts of CLL throughout the patient pathway.
• Consider possible advocacy initiatives to improve patient outcomes in CLL.

The event agenda can be downloaded HERE.

This meeting provided a great opportunity to share information on how advocacy can support improvements in care and empower patients with CLL.

Huge thanks to our speakers Nick York, CLLAN Chair (UK); Professor Paul Moss, Professor of Haematology within the Institute of Immunology and Immunotherapy at the University of Birmingham (UK); Christina Karamanidou, CERTH (Greece); Natacha Bolaños, Head of Membership and Alliances, Lymphoma Coalition (Spain); Kathryn Huntley, General Manager, Leukemia Foundation (Australia); Zack Pemberton-Whitley, CEO Leukaemia Care (UK); and Dr Mervat Mattar, Haematologist, Cairo University (Egypt).

This event was funded by AstraZeneca. The themes and content of the white paper were co-developed and reviewed by CLL Advocates Network (CLLAN) and AstraZeneca. CLLAN representatives did not receive any financial compensation in relation to this white paper. A working group made up of members from the clinical community, CLL Advocates Network representatives and other expert advocates acted as non-compensated reviewers of the White Paper and provided input on content.