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Member organizations gather for a successful virtual meeting  

By Serdar Erdoğan 
IMF Director, GMAN and European & Middle Eastern Patient Programs  

 

On December 15, 2021, representatives of the Global Myeloma Action Network (GMAN) member organizations gathered to hear about upcoming myeloma therapies and other news from the 2021 American Society of Hematology Annual Meeting (ASH 2021).  

Nearly 30 representatives of the global myeloma community dialed in for the 2-hour webinar, held in place of the traditional in-person meeting. The webinar included inspirational developments in global research by the International Myeloma Foundation (IMF).  

IMF Chairman of the Board Dr. Brian G. M. Durie and IMF Founder and Director of Global Patient Initiatives Susie Novis Durie welcomed a truly global community dialing in from as far afield as Finland, Switzerland, across the United States, and even Australia at five in the morning!  

Susie Durie welcomed the participants and shared exciting news: long-term GMAN member Yelak Biru is now serving as the IMF’s Chief Executive Officer. Yelak is a dynamic patient advocate and has served on the IMF’s Board of Directors since 2015.  

The webinar agenda included an update on key abstracts at ASH, an update on the 2022 Susie Novis Durie Educational Grants, and a review of 2021 GMAN patient education webinars.  

Dr. Durie provided a comprehensive summary of highlights from ASH, where 879 myeloma-related abstracts were presented. There was much exciting data from the iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) research study where more than 80,000 individuals have already been screened for the earliest signs of myeloma.  

The iStopMM data included 6 abstracts (4 oral presentations and 2 poster presentations). This is the largest clinical trial ever conducted of this nature. Abstract #151 reported an unexpectedly high prevalence of smoldering multiple myeloma (SMM), demonstrating an incidence of 0.5% in people over 40 years of age, which supports the importance of screening.  

One key highlight from abstract #549, an update of the phase Ib/2 CARTITUDE-1 clinical trial in relapsed or refractory myeloma patients, where T-cells are removed and engineered, then re-administered in a “one and done” process, was the overall response rate (ORR) of 97.9%! “This is amazing, with a deepening response over time,” said Dr. Durie, “Data shows 67% median response at one year and 83% median response at 2 years follow-up.”  

There was some exciting data in abstract #898, an early phase I study of an immunocytokine molecule modakafusp mlfa (TAK-573), with encouraging response rates. Abstract #84 described an immunotherapy molecule REGN5458, with response rates almost doubled compared to single-agent treatment.  

Susie Novis Durie Educational Grant  

Three inspiring presentations from 2021 recipients in Austria, Israel, and Portugal highlighted the importance of GMAN support to its member organizations.  

Elfi Jirsa reported on a program in Austria to support a greater quality of life by increasing movement and activity. Thousands of participants join a regular online program that is free to attend and supported by Professor Richard Crevenna and Philipp Jelinek, the famous Austrian triathlete and television presenter.  

In October, more than 17,000 participants joined a symposium. In addition, more than 17,000 individuals have benefited from a symposium held in October 2021 that continues to be available for free at myelom-lymphoma.at.  

Varda Shoham from Israel’s AMEN organization introduced a program to support the Arabic population that represents almost a quarter of local myeloma patients. The project aims to raise awareness amongst patients, caregivers, and physicians. Materials are translated into Arabic, including on a Facebook page for Arabic patients, and simultaneous translation into Arabic language is made available at medical conferences.  

The Portuguese Association against Leukaemia (APCL) was represented by Lara Cunha. The development of a new tool to support patients and caregivers convened a multidisciplinary team that includes a psychologist and physiotherapist. The launch happened in February 2022.  

Patient meetings  

Despite the pandemic, GMAN member organizations maintained an active seminar calendar in Fall 2021. Below are just three examples of such activities. Other myeloma patient education meetings were also held.  

On October 22, the Myelom-Lymphom Hilfe Österreich group hosted a seminar in Austria with attendees also joining online from Germany and Switzerland. Elfi Jirsa, President of Myelom-Lymphom, opened the meeting that featured Prof. Dr. Heinz Ludwig, Prof. Richard Crevenna, Prof. Peter Neumeister, Dr. Thomas Nösslinger, and Dr. Veronika Lang. Phillip Jelinek (Romy Prize winner, triathlete, and fitness coach) demonstrated an exercise session that has since been watched by more than 4,000 individuals!  

On October 23–24, Ceska Myelomova Skupina and Klub Pacientu Mnohocetny Myelom held a webinar in Czechia with 110 myeloma patients and caregivers attending virtually. The faculty included Prof. Roman Hajek, Dr. Vladimir Maisnar, Dr. Jakub Radocha, Dr. Alexandra Jungova, and Dr. Jiri Minarik. Alice Onderkova and Petr Hylena reported on meetings and activities in both Czechia and Slovakia.  

On November 11, Icelandic myeloma patient organization Perluvinir held a webinar that was attended by 40 patients, including several who joined online while in the hospital.  

IMF Founder and Director of Global Patient Initiatives Susie Durie opened the webinar with moderator (and myeloma patient) Kjartan Gunnarsson. Faculty included IMF Chairman of the Board Dr. Brian G.M. Durie, Dr. Sigurður Kristinsson, Dr. Sæmundur Rögnvaldsson, and nurse Halla Gretarsdottir. This was the first Perluvinir webinar with attendees from three continents!  

Action and awareness  

IMF Vice President of Marketing Peter Anton gave updates on 2021 March Myeloma Action Month (MAM). This included the Wall of Resilience showing activity from a successful multi-channel approach in more than 36 countries using the hashtag #IAMRESILIENT2021.  

Peter also shared highlights of the 2021 Blood Cancer Awareness Month (BCAM), which took place in September, including the use of a new channel aimed at younger patients, Twitch. The campaign had a remarkable impact—there were over 10 million hits using the #KnowMyeloma hashtag.  

In 2022, the focus is all about ACTION! We look forward to supporting this and to learning about the positive impact for our community at a future meeting.  

In closing  

To bring the webinar to a close, Dr. Durie gave an update on COVID-19 and reminded everyone of how important it is for myeloma patients to be fully vaccinated and boosted, if possible.  

He also advised us to be aware of asymptomatic spread and to be especially careful when traveling. It is important to look after ourselves and to work on our resilience. There are useful and up-to-date IMF videos and materials, including Dr. Durie’s blogs, that are always available at myeloma.org.  

Dr. Durie thanked everyone for their engagement and support, including our sponsors without whom this would not have been possible: Bristol Myers Squibb, GSK, Oncopeptides, Sanofi Genzyme, and Takeda Oncology. 

 On behalf of GMAN, we thank you all for your support of the global myeloma community!  

 

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