Navigating a post-pandemic world: A guide for immunocompromised blood cancer patients (February 2024)

In late 2021, a multi-stakeholder coalition consisting of representatives from the global patient advocacy and clinical community formed the International COVID-19 Blood Cancer Coalition (ICBCC) to address the specific impact of COVID-19 on immunocompromised blood cancer patients (both acute and chronic), like those living with CLL and other Non-Hodgkin lymphomas (NHLs).

ICBCC launches flyer and digital poster for EHA 2023 (June 2023)

As part of its 2023 toolkit comprised of different educational materials (the full set of materials is currently being developed), ICBCC has created a flyer and digital poster mainly addressing HCPs for dissemination and publication at this year´s congress of the European Hematology Association EHA 2023.

Go to ICBCC EHA Flyer.

Go to ICBCC Digital Poster (16:9 screen version).

ICBCC representation at EHA 2023 (June 2023)

The International COVID-19 Blood Cancer Coalition (ICBCC) will again be represented and promoted at the hybrid congress of the European Hematology Association EHA 2023 that is taking place in Frankfurt / Germany from June 8-11, 2023.

With just over 10,000 participants in person and another 6,000 joining the congress virtually this year, EHA is the leading meeting place for hematologists in all fields of this speciality in Europe and beyond.

Similar to last year, ICBCC will again be represented at the ‘Patient Advocacy Hub’ that is part of the ‘Collaboration Plaza’ in the EHA Exhibition Hall.

Our latest ICBCC flyer and printouts of the coalition´s patient impact statement will be distributed widely.

One of the six campaign sponsors (please scroll down to bottom of page to see the full list of sponsors) devised a fund-raising event to the ICBCC campaign through CLL Advocates Network (CLLAN) as the coalition´s formal host, collecting signatures from congress visitors and donating 10 EUR per collected signature. The donated funds are utilized solely and exclusively to support the ICBCC campaign.

ICBCC launches its revised Joint Patient Impact Statement

Following on from the previous ICBCC Joint Patient Impact Statement launched in 2022, with date of 31 May 2023 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.

Go to ICBCC´s May 2023 Joint Patient Impact Statement.
Go to current list of endorsers.

Campaign Interim Report now available (October 2022)!

The ICBCC Campaign 2022 interim report summarises the activities to date carried out by the campaign secretariat (formally led by the CLL Advocates Network and supported by Patvocates as external consultancy) to build an international coalition of representatives from the global patient advocacy and clinical community, set up to promote the needs of immunocompromised patients around the world in the face of the ongoing COVID-19 pandemic.

This interim report will describe in detail the rationale behind the 2022 ICBCC Campaign, what specific and concrete actions can and need to be undertaken to protect the lives of immunocompromised people, and what has been achieved so far.

Here is the LINK TO THE 2022 ICBCC CAMPAIGN INTERIM REPORT

ICBCC follow-up survey (September/October 2022)

For the purpose of follow-up, we have set up a quick survey to understand how that campaign has been progressing in your respective settings, and also to ask you about how we can help you further in your advocacy work to improve the availability and accessibility of services to at-risk patients living with blood cancer and exposed to the risk of COVID-19.

We call upon all those involved in the initiative (patient impact statement endorsers and all those of you that had followed the work of the ICBCC, independently of whether you have made use of the campaign materials or not) to please dedicate 10-15 minutes of your valuable time to complete the survey.

Here is the LINK TO THE  SURVEY.

Thank you for completing the survey and helping us improve our services.

ICBCC presentation at ESMO 2022 (September 2022)

The ICBCC project was accepted as one of the topics presented within the Patient Advocacy session “Join us, learn, and share: Best practices across Europe” (session chairs: Agata Polinska, PL; Petra Adamkova, CZ) at this year´s congress of the European Society for Medical Oncology (ESMO) held in Paris, France, September 9-13, 2022.

The project was presented by Jana Pelouchová, president of the Leukemia Patient Advocates Foundation, Steering Committee Member of the CLL Advocates Network acting as secretariat for the ICBCC on behalf of the coalition, and ESMO PAWG Member.

Besides the presentation at the session, materials were disseminated throughout the congress.

ICBCC representation at the 13th International Workshop of the German CLL Study Group (September 2022)

The International COVID-19 Blood Cancer Coalition (ICBCC) was represented and promoted at the 13th International Workshop of the German CLL Study Group which took place in Cologne / Germany as a hybrid event from September 9-10, 2022. Similarly to EHA 2022, one of the six ICBCC sponsors (please scroll down to bottom of page to see the full list of sponsors) devised a fund-raising event to the ICBCC campaign through CLL Advocates Network (CLLAN) as the coalition´s formal host. Signatures from congress visitors were collected, and 10 EUR were donated by the sponsor post-event per collected signature. The donated funds are utilized solely and exclusively to support the ICBCC campaign. Besides the signature wall, printed materials were disseminated throughout the conference.

Campaign launch (June 2022)

The campaign was launched in the week of June 20-24, 2022 with the release of the global campaign toolkit that was made available for download to help raise awareness of the vulnerability and needs of the immunocompromised blood cancer community around COVID-19 prevention and treatment. The ICBCC toolkit consists of:

• Three different flyers for different target audiences
• Letter template in two different formats (editable)
• A social media package including social media posts & visuals and a Social Media Publishing Calendar

Materials were made available for download in 14 languages (Arabic, Croatian, Czech, English, Estonian, French, Greek, Hebrew, Macedonian, Russian, Romanian, Serbian, Spanish & Swahili) and shared across different online channels.

Coalition members and supporters were encouraged to help spread the message and promote the materials on the local level, across their Social Media accounts and other online channels!

ICBCC representation at EHA 2022 (June 2022)

The International COVID-19 Blood Cancer Coalition (ICBCC) was represented and promoted at the hybrid congress of the European Hematology Association EHA 2022 held in Vienna, Austria, June 9-12, 2022.

With just over 10,000 participants in person and another 6,000 joining the congress virtually this year, EHA is the leading meeting place for hematologists in all fields of this speciality in Europe and beyond.

ICBCC was represented at the 2022 ‘Patient Advocacy Hub’ that – like in previous years – was part of the ‘Collaboration Plaza’ in the EHA Exhibition Hall. Points of contact on site were Pierre Aumont (vice-chair of the CLL Advocates Network as host of the ICBCC campaign) and Nicole Schröter (Project Manager CLL Advocates Network).

Printed ICBCC flyers and printouts of the coalition´s patient impact statement to the congress were distributed widely. EHA as key endorser of the ICBCC Patient Impact Statement also helped with dissemination of printed materials in Vienna.

One of the six campaign sponsors (please scroll down to bottom of page to see the full list of sponsors) devised a fund-raising event to the ICBCC campaign through CLL Advocates Network (CLLAN) as the coalition´s formal host. A total of 215 signatures from congress visitors were collected, and 5 EUR were donated by the sponsor post-event per collected signature. The donated funds are utilized solely and exclusively to support the ICBCC campaign.