VOLUME 24 NUMBER 1 | WINTER 2024
A publication of the International Myeloma Foundation
What Patients Need to Know Top myeloma research presented at the 65th Annual Meeting & Exposition of the American Society of Hematology
ALSO IN THIS EDITION:
Research on Health Equity and the Patient Experience The latest patient-centric studies and research on diversity, equity, and inclusion are presented at the 65th Annual Meeting & Exposition of the American Society of Hematology
This edition of Myeloma Today is supported by Bristol Myers Squibb • GSK • Janssen Oncology • Karyopharm Therapeutics • Pfizer • Takeda Oncology
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In less than 10 minutes of your time, Dr. Joseph Mikhael (IMF Chief Medical Officer) summarizes his takeaways from the 65th Annual Meeting of the American Society of Hematology (ASH) . Watch now
diversity.myeloma.org Diversity and inclusion are integral aspects of the myeloma community
medications.myeloma.org Learn about FDA-approved therapies for myeloma
support.myeloma.org Robin Tuohy rtuohy@myeloma.org
will help you find a multiple myeloma support group
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This webinar presents the basics of myeloma diagnosis and early treatment, as well as exciting new immunotherapies and the importance of expert management. Watch now
publications.myeloma.org •B ooklets that explain myeloma therapies and more •T ip cards on topics important to myeloma patients •G uide to Myeloma Acronyms and Abbreviations •G uide to Myeloma Terms and Definitions •M yeloma Today Summer 2023 edition
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A Message from IMF Co-Founder Susie Novis Durie Dear Reader,
As I look back at my work in the myeloma community, I am reminded of how it all began. In 1989, in a coffee shop in London, Brian D. Novis, Dr. Brian G.M. Durie, and I brainstormed about how we could help make a difference for patients with myeloma. That year, Brian Novis was diagnosed at the age of 33, and he was dismayed to find a dearth of resources and information for patients and their loved ones. Our conversation in London led to the founding of the Inter national Myeloma Foundation (IMF), structured with four pillars: Research, Education, Support, and Advocacy. In every way, the IMF was the first of its kind. But we stepped into the unknown with conviction, believing that “One person can make a difference, but two people can make a miracle,” as Brian Novis would say. In 1990, the IMF launched operations, with Brian Novis working from the IMF headquarters – a tiny room in the basement of our home in Los Angeles, California. Ever since, my life has been ded icated to improving the quality of life of myeloma patients while working toward prevention and a cure. This is the mission of the IMF, and it is my personal purpose. The years have passed in the blink of an eye and so much has been accomplished. Below is just a brief recap of selected “firsts” by the IMF. In 1992, the IMF hosted the first-ever Clinical Conference on myeloma. We held the first fundraiser for myeloma research. The debut edition of the IMF’s quarterly journal, Myeloma Today, was published. Our rallying cry “Knowledge is Power” continues to be heard the world over to this day. In 1993, the IMF repre sented myeloma patients at the annual meeting of the American Society of Hematology (ASH), building a bridge with the researchers working on scientific advances and clinical treatment options. The IMF held its inaugural Patient & Family Seminar, the ground breaking educational ini tiative that evolved into Susie & Brian D. Novis at the first IMF Gala
Susie Durie & Dr. Brian G.M. Durie with Chul Hwan Lee (Korea Blood Cancer Association), a recipient of the annual GMAN Susie Novis Durie Grant that supports patient programs and services
Susie Novis Durie & Dr. Brian G.M. Durie at the IMWG Summit in Vienna, Austria
one of the IMF’s signature programs, educating countless patients and care partners around the world. It may now be taken for granted, but it was a novel idea to assert that if doctors receive education from myeloma experts, the patient community should, too. In 1994, the first Brian D. Novis Research Grant, established in memory of the IMF co-founder, was awarded. These annual grants continue to promote myeloma research in an effort to improve patient outcomes. To date, more than 100 projects have been funded. Also in 1994, the IMF hosted its first international Myeloma Clinical Conference in Singapore. In addition, the first Myeloma Support Group was formed, which has led to the IMF fostering a coalition of more than 200 myeloma support groups across the U.S. and around the world. In 1995, the IMF formed its Scientific Advisory Board (SAB). The SAB published the first consensus management guidelines for myeloma in 2003. Also in 1995, the IMF held its first international Patient & Family Seminar in London in partnership with IMF UK. In 1997, the IMF’s second international affiliate – IMF Japan – began operations under the leadership of myeloma patient Akira Horinouchi. In 1998, the IMF participated in “The March,” the grassroots cancer advocacy event in Washington, D.C. Among the 100,000 cancer patient advocates in attendance, more than 400 repre sented the IMF and the myeloma community.
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Susie Durie & Dr. Brian G.M. Durie are awarded a joint 2019 Honorary Doctorate for Scientific Excellence from the Vrije Universiteit Brussel (VUB) at a ceremony in Brussels, Belgium
This free issue of Myeloma Today© (Volume 24, Number 1) is dated February 1, 2024. Myeloma Today is a quarterly (Spring, Summer, Fall, and Winter) publication of the International Myeloma Foundation, located at 4400 Coldwater Canyon Avenue, Suite 300, Studio City, CA 91604 USA
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A Message from IMF Co-Founder Susie Novis Durie CONTINUED FROM PAGE 3 In 1999, Michael Katz (1953–2015), a myeloma patient and a member of the IMF Board of Directors, was appointed by the National Cancer Institute (NCI) to its newly formed Director’s Consumer Liaison Group, tasked with creating a forum for can cer advocacy and scientific communities to help set research priorities. Myeloma patients finally had “a seat at the table.” Also in 1999, the IMF held the first annual Support Group Leaders Summit to advance skills, resilience, and peer-to-peer fellowship. In 2023, the IMF hosted the 24th annual Support Group Leaders Summit Also in 1999, the IMF initiated a workshop on pathogenesis of myeloma at the 7th Annual International Myeloma Workshop (IMW) hosted by Prof. Håkan Mellstedt and co-chaired by Dr. Durie at the Karolinska Institute in Stockholm, Sweden. In 2000, the IMF hosted Japan’s first Patient & Family Seminar in Tokyo. Midori Horinouchi stepped up to lead IMF Japan after her husband lost his battle with myeloma. Such continued commitment to the mission is shared by many of us who have been care partners to patients with myeloma. In 2002, in my role as IMF President & CEO, I testified before a U.S. Senate appropriations subcommittee on Labor, Health & Human Services about the need to fund cancer research at the NCI. In 2003, the IMF’s first Robert A. Kyle Lifetime Achievement Award was given to its namesake and myeloma research pio neer at Mayo Clinic. This award continues to be bestowed annu ally to recognize the leaders in the field of myeloma. In 2004, IMF Latin America was founded by Christine Battistini after her mother was diagnosed with myeloma. Christine con tinues to lead the organization, which has grown and excelled. In 2005, the first International Staging System (ISS) to assess clin ical outcomes in myeloma was published by the IMF’s research division in the journal Leukemia. In 2015, the IMWG published the Revised ISS (R-ISS), adding two more prognostic factors. In 2006, the IMF Nurse Leadership Board® (NLB®), representing nurse experts who care for myeloma patients at leading medi cal centers, was established. In 2009, the IMF launched Myeloma Awareness Month, which is now Myeloma ACTION Month! In March 2023, this global cam paign reached more than 41 million people across 45 countries. In 2010, the International Myeloma Working Group (IMWG) was founded to conduct collaborative basic, clinical, and transla tional research to improve outcomes for myeloma patients while providing scientifically validated, critically appraised con sensus guidelines for myeloma. The IMWG is an independent body comprised of nearly 300 myeloma experts. Also in 2010, the U.S. Congress designated September as Blood Cancer Awareness Month to create awareness, increase fund raising, and support patients with all types of blood cancers. The IMF stepped up to amplify this campaign. In 2023, the IMF’s campaign reached 20 million people in 64 countries! In 2011, the IMF established the Asian Myeloma Network (AMN), comprised of myeloma experts from China, Hong Kong, Japan, Korea, Singapore, Taiwan, and Thailand. In 2012, the IMF launched its Black Swan Research Initiative® (BSRI®) to find a pathway to a cure for myeloma. The IMF also held its first Myeloma Master Class training course for 4 WINTER 2024
hematologists from China, with faculty comprised of worldrenowned myeloma experts. In 2013, the IMF launched its ever-growing video library of interviews with top myeloma researchers and clinicians, the “Ask Dr. Durie” series, and more. Visit videos.myeloma.org. Also in 2013, the IMF established an international advocacy alliance now called the Global Myeloma Action Network (GMAN) to improve the lives of myeloma patients around the world. That year, the IMF convened the first GMAN Summit in Vienna, Austria. In 2016, the iStopMM® (Iceland Screens, Treats, or Prevents Multiple Myeloma) study was launched as the first largescale project to identify and treat the precursors of myeloma. iStopMM® continues to produce important data. In 2019, the BSRI began to fund “The Cure Trials,” CESAR and ASCENT, with the aim of treating myeloma early and aggressively. In 2020 and throughout the COVID-19 pandemic, the IMF con tinued to deliver its programs and services to the myeloma community in inventive and effective ways. In 2021, the IMF welcomed a new President & CEO, myeloma survivor and advocate Yelak Biru. “Living with myeloma is not easy but having an organization like the IMF beside me during my cancer journey has helped me live with – and not for – myeloma,” said Yelak. After Yelak joined the leadership team, I took on the role of Director, Global Patient Initiatives. Also in 2021, the IMF launched the M-Power nationwide initiative to improve the short-term and long-term outcomes of African American patients with myeloma. In 2022, the IMF shared our 2023–2027 Global Strategy Plan, highlighting the key objectives to raise the bar, broaden our reach, and innovate every step of the way. In 2023, the IMF Innovation and Impact Report featured the Medical Student Scholars for Health Equity in Myeloma men toring program for African American medical students, the Immune Therapy Registry, the Virtual Tissue Bank, and the Patient-Focused Digital Ecosystem. In 2024, as I step into retirement and write my final Dear Reader column, I feel deep gratitude to the IMF Board and Staff, and to all of the IMF’s supporters who have helped make the dream of the IMF a reality. I am especially thankful for the visionary partnership of IMF co-founder Dr. Brian G.M. Durie. I have great confidence in the IMF’s continued successes at the forefront of patient care and myeloma research. Being of service to the myeloma community has been my life’s work for 35 years. In that time, the lives of myeloma patients have improved dramatically – patients are living better and living longer. This is very, very personal for me. I look forward to the day in the not-too-distant future when we can celebrate together that a cure for this disease is finally here. Warm regards,
Susie Novis Durie IMF Co-Founder info@myeloma.org myeloma.org
Letter from the IMF President & Chief Executive Officer Dear Friends, We are living in the science fiction era of multiple myeloma. When I was diagnosed in 1995, the only available myeloma treatment strategy was to “burn the lawn and hope it recovers.” Now, doctors can collect one type of cell from your body, then engineer it to kill your myeloma upon reinfusion. Technology is accelerating science. Over the past year, three new drugs have been approved by the FDA for the treatment of myeloma. Curative treatments currently in clinical trials are being discussed by the ever-growing field of myeloma experts as our soon-to-be reality.
disease states. Historically, the IMF has been the one organiza tion to play a significant role in myeloma research and, impor tantly, the democratization of the research outcome. This fact remains. We want and need the output of the research in myeloma to benefit the largest number of patients.
This was in abundant evidence at the December 2023 annual meeting of the American Society of Hematology (ASH), the most important myeloma medical meeting in the U.S. that is also one of the premier global meetings in myeloma. In this edition of Myeloma Today, you can read an article by Dr. Brian G.M. Durie (IMF Chief Scientific Officer & Chairman of the Board) about the top myeloma research and key takeaways from 2023 ASH and the 2023 IMWG Conference Series on making sense of treatment, along with the experiences of myeloma patient advocates in attendance at ASH. Also in this edition, Dr. Joseph Mikhael (IMF Chief Medical Officer) discusses health equity and patient experience research presented at ASH.
The IMF doesn’t just accelerate myeloma research. The IMF is also driving numerous initia Yelak Biru tives, both domestically and globally, so that patients have access to the life-saving treat ments as these become available both in clinic and through clinical trials. The IMF’s interconnected relationship with the myeloma scientific and clinical experts, with industry, and with the patient community benefits all as it informs both the research and the resulting outcome.
More than 1,000 myeloma-related abstracts were presented at ASH 2023. Some of the myeloma patients representing the IMF and the patient community at ASH helped design some of the clinical trials being presented. Myeloma patients have had a huge impact on myeloma research, more so than in many other
Yelak Biru co-authored abstract #3718 presented at ASH 2023 on cytokine release syndrome (CRS)
Yelak Biru Myeloma Patient IMF President & CEO The IMF needs YOU with us on this journey of co-creating the future in myeloma. Whether you are a patient, care partner, philanthropist, doctor, nurse, or industry supporter, you can help us to better understand the challenges in your path and how to best overcome them on the way to a cure for myeloma. Together, we are each a part of the solution. Sign up for one of our events, join a support group, call on policymakers to make the healthcare changes you want to see, learn how to optimize your wellness, join groundbreaking treatment initiatives, or invest in our efforts to improve lives and find a cure. There are countless ongoing ways to engage with us to transform the state of myeloma care today, but if you don’t see the opportunity that is right for you, get in touch. We would love to hear from you and work with you to develop the innovations that will allow for a myeloma-free future for everyone.
IMF Executive & Staff team at ASH 2023: (l to r) Danielle Doheny, Dr. Joseph Mikhael, Sylvia Dsouza, Emma Hatcher, Jon Fitzpatrick, Yelak Biru, Lisa Paik, Meghan O’Connor, Katie Ives, and Narmeen Shammami
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Scientific & Clinical
What Myeloma Patients and
Key takeaways from the 65th Annual Meeting & By Dr. Brian G.M. Durie IMF Chairman & Chief Scientific Officer
I am pleased to share with readers of Myeloma Today an over view of the top research abstracts of interest presented during myeloma sessions at the 65th Annual Meeting & Exposition of the American Society of Hematology (ASH) in December 2023 in San Diego, California. More than 1,000 research abstracts at ASH were related to myeloma, demonstrating significant develop ments for our community. Important work in myeloma research is advancing along several fronts. Exciting research data presented at ASH 2023 demon strated numerous observations with great potential for a positive impact in the immediate future. For more detailed discussions, I invite you to view the many IMF video recordings by visiting videos.myeloma.org and clicking on the “ASH” tab, as well as to replay two archived IMF webinars, “Top Myeloma Research Presented at ASH 2023: a Patient Perspective” and “The IMWG Conference Series: Making Sense of Treatment.” Below are a just few selected abstract presentations from ASH 2023 that may pave the way toward a brighter future for patients with myeloma and their loved ones.
Late-Breaking Abstract 1 LBA-1 presented the primary analysis of the PERSEUS phase III clinical trial, a study of Darzalex® (daratumumab) + Velcade® (bor tezomib) + Revlimid® (lenalidomide) + dexamethasone (D-VRd) versus VRd alone in newly diagnosed multiple myeloma (NDMM) patients eligible for autologous stem cell transplantation (ASCT). In this study, 709 study patients were randomized to receive D-VRd (355 patients) or VRd alone (354 patients). This study demonstrated that the four-drug (quadruplet) therapy with D-VRd (with SQ administration of Darzalex Faspro®) signifi cantly improved progression-free survival (PFS) and increased
depth of response (DpR) with consistent and clinically meaning ful PFS benefit across clinically relevant subgroups. The PERSEUS safety profile was consistent with the known safety profiles for Darzalex Faspro and VRd. These data, together with the previously presented results from the GRIFFIN phase II clinical trial, support the use of D-VRd followed by maintenance with Darzalex + Revlimid (D-R) as a new standard-of-care for ASCT-eligible NDMM when compared to VRd alone followed by maintenance with Revlimid. Key takeaways: 48-month PFS rates of D-VRd induction followed by ASCT, then D-VRd consolidation and D-R maintenance versus VRd induc tion followed by ASCT, VRd consolidation and R maintenance: 84.3% versus 67.7%. DpR of D-VRd regimen versus VRd regimen: 87.9% versus 70.1% (overall complete response or better) and 75.2% versus 47.5% (overall MRD-negativity). These data demonstrate the clinically meaningful benefit of 4-drug D-VRd followed by D-R maintenance versus the 3-drug VRd followed by R maintenance. For more information, read the unabridged ASH abstract at ash.confex.com/ash/2023/webprogram/Paper191911.html
Plenary Scientific Session 4 This plenary session presented the results of the ISKIA phase III clin ical trial of 302 patients with newly diagnosed multiple myeloma (NDMM) who were eligible for an autologous stem cell trans plant (ASCT). Patients were randomized to two study arms with 151 patients in each arm. One arm received Kyprolis® (carfilzomib) + Revlimid® (lenalidomide) + dexamethasone (KRd) and the other arm received Sarclisa® (isatuximab) + KRd (Isa-KRd). The study assessed efficacy and safety of Isa-KRd as pre-ASCT induction ther apy and post-ASCT consolidation therapy.
top row, left to right – Dr. Hartmut Goldschmidt, Dr. Sigurður Kristinsson, Dr. Peter Voorhees, Dr. Shaji Kumar, Dr. Brian G.M. Durie bottom row, left to right – Dr. Bruno Paiva, Dr. Philippe Moreau, Ashraf Badros, Dr. Nikhil Munshi, Dr. Paul Richardson
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Care Partners Need to Know
Exposition of the American Society of Hematology Compared to KRd alone, the addition of Sarclisa to KRd (Isa-KRd) induction and consolidation significantly increased the rates of MRD-negativity in every treatment phase and with no new safety concerns, including in patients with high-risk multiple myeloma (HRMM). The ISKIA phase III clinical trial once again affirms the added benefit of using four-drug combinations when compared to the three-drug combinations. Key takeaways:
risk of relapse. Such ability to monitor excellent deep responses more easily is a major win for both patients and investigators, and we greatly anticipate the forthcoming availability of these tests. Key takeaway:
Compared to KRd alone, Isa-KRd significantly increased 10–5 and 10–6 MRD negativity after each phase (induction, transplantation, consolidation, and post-consolidation).
For more information, read the unabridged ASH abstract at ash.confex.com/ash/2023/webprogram/Paper186916.html
Isa-KRd consistently increased MRD negativity at 10–5 and 10–6 in all subgroups of patients, including high-risk and very high-risk myeloma. For more information, read the unabridged ASH abstract at ash.confex.com/ash/2023/webprogram/Paper177546.html
Abstract #339 Minimal residual disease (MRD) is an established test used in myeloma clinical trials but not in routine clinical practice. A wider use of MRD testing would generate more results based on peri odic assessments rather than limited time points. This study used minimally invasive peripheral blood testing to assess if it could be used instead of marrow testing to detect and measure MRD. This is the first study of minimally invasive MRD assessment in myeloma. This study included 243 transplant-eligible and ineligible patients who were on maintenance or observation at the time of MRD assessment in PETHEMA/GEM clinical trials. Results show that BloodFlow, CloneSight, and quantitative immunoprecipitation mass spectrometry (QIP-MS) detect MRD with high sensitivity in peripheral blood, circulating free DNA (cfDNA), and serum. These methods achieved a high MRD-negativity in the bone marrow and enabled the identification of patients with very low
This study paves the way toward minimally invasive MRD assessment in myeloma patients on maintenance or observation.
Abstract #340 Mass spectrometry (“mass spec” or MS) is capable of detect ing monoclonal proteins (M-proteins) in the peripheral blood of myeloma patients with high sensitivity. This study used MS to assess 585 samples from 138 myeloma patients during post-trans plant maintenance therapy in the phase III ATLAS clinical trial. Study results suggest that the optimal timepoint for MS-based assessment of myeloma in the post-ASCT setting may be as long as 18 months after transplant. The EXENT® assay may be comple mentary to bone marrow-based techniques for MRD assessment, allowing for more accurate prognostication when used in combi nation. Further studies are needed to confirm exact timing and the prognostic role of MS results. Key takeaway: Prognostic significance of MS-negativity increases with time. For more information, read the ASH abstract at ash.confex.com/ash/2023/webprogram/Paper190209.html
Abstract #214 The IMF-supported iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) study is the first large-scale screening project in myeloma. All residents of Iceland born in 1975 or earlier were invited to participate, of whom 75,422 participants provided a serum sample for screening. Serum samples collected between (continues on next page)
top row, left to right – Dr. Andrew Spencer, Dr. Monique Minnema, Dr. Thomas Martin, Dr. Roman Hájek, Dr. Pieter Sonneveld bottom row, left to right – Dr. Jean-Luc Harousseau, Dr. Wee Joo Chng, Dr. Elena Zamagni , Dr. Sæmundur Rögnvaldsson, Dr. Saad Usmani
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Scientific & Clinical ASH 2023 KEY TAKEAWAYS – CONTINUED FROM PAGE 7 2016–2020 were screened for the presence of a monoclonal protein by serum protein electrophoresis (SPEP) and free lightchain (FLC) assay. A total of 3,487 participants were identified to have previously unknown monoclonal gammopathy of unde termined significance (MGUS), an asymptomatic precursor of myeloma. The iStopMM study aims to evaluate systematic screening for MGUS as a way to significantly expand the availability of early treatment and improve overall outcomes. The study is also look ing at the potential psychological effects of screening for MGUS. Despite the widespread use of cancer screening, the literature on the potential harms of screening, particularly psychological harms, is limited. Importantly, iStopMM demonstrated that MGUS screening was not associated with any demonstrable psychological harm. This shows, for the first time, that providing detailed and balanced information at diagnosis, and plans for follow-up can prevent psychological harm from the diagnosis of this precancerous condition, a finding which is significant to the field of cancer screening in general. Further follow-up is required to assess the overall value of screening but, clearly, results so far are very encouraging. For more information, read the unabridged ASH abstract at ash.confex.com/ash/2023/webprogram/Paper186397.html
Abstract #93 This study looked at patient outcomes following cellular ther apy with Carvykti® (ciltacabtagene autoleucel or “cilta-cel”) in relapsed or refractory multiple myeloma (RRMM). Investigators sought to understand the determinants of chimeric antigen receptor (CAR) T-cell response and the overall survival (OS) in 25 patients with RRMM receiving Carvykti infusion therapy. Single cell immune profiling and transcriptomic sequencing identified subpopulations of CD4 and CD8 cells which in con cert may influence long term CAR-T outcomes. Findings demon strate an early expansion of CAR T cells, with very few CAR T
cells surviving after 3 months, suggesting that the efficacy of this therapy is related to early dynamics of these populations. Ongoing studies will further analyze the role of the immune microenvironment and clonal T cell dynamics in relation to patient outcomes. For more information, read the unabridged ASH abstract at ash.confex.com/ash/2023/webprogram/Paper186395.html
In closing The 2023 ASH meeting brought the new myeloma treatment landscape into focus. Data illustrated that after screening, the face of myeloma has changed: myeloma patients present with lesser CRAB (calcium elevation, renal insufficiency, anemia, and bone disease) abnormalities. So much was presented at ASH 2023 about new immune ther apies that it was hard to keep up! Results from bispecific (even trispecific!) antibodies, CAR T-cell therapy, and other cellu lar therapies illustrated major evidence of treatment efficacy. The major challenge is balancing side effects and toxicities to achieve an effective, patient-friendly treatment schedule. In the meantime, the landscape for myeloma patients contin ues to change dramatically for the better. Patient outcomes are much improved. Much longer remissions and survival are possi ble and, in fact, are expected for a majority of patients. For the newly diagnosed, there are treatment options that have been proven effective. Even for patients with higher-risk myeloma, there are more treatment options currently available. Much work remains to be done to assess the optimal sequenc ing of agents as well as schedules, dosing, and durations of therapy. The Immune Therapy Registry project of the International Myeloma Working Group (IMWG) will help guide future decision-making. I look forward to sharing with you the advances to come. Stay tuned to IMF news by signing up at subscribe.myeloma.org for our quarterly journal Myeloma Today and weekly e-newsletter Myeloma Minute. MT
“Making Sense of Treatment”
WATCH THE REPLAY
Dr. Brian G.M. Durie and a panel of patient advocates discuss the key takeaways from myeloma research presented at ASH 2023. WATCH NOW 8
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WATCH THE REPLAY
Dr. Brian G.M. Durie leads a panel of myeloma experts in a discussion about the latest research news from the ASH 2023. WATCH NOW info@myeloma.org myeloma.org
Scientific & Clinical
DR E RE IS
JOE
Research at ASH 2023: Health Equity and the Patient Experience
#WH
By Dr. Joseph Mikhael IMF Chief Medical Officer
as demonstrated by Dr. Banerjee (abstract #2386) to be associ ated with a lower income.
The annual meeting and exposition of the American Society of Hematology (ASH) is truly an amazing experience. The December 2023 meeting brought together more than 32,000 registrants, of whom over 28,000 attended in person in San Diego, California. ASH is the largest gathering in the world that is dedicated to blood, and myeloma is a critical part of this field. Indeed, out of over 7,500 research abstracts submitted to ASH, more than 1,000 abstracts were dedicated to myeloma.
Lastly, there were two abstracts presented by medical students who participated in the IMF Student Scholars for Health Equity in Myeloma inaugural program in 2023. Semaje Testamark won an abstract achievement award for analyzing trends in survival of myeloma patients based on race, ethnicity, and location (abstract #1977)! Yaw Adu also presented research that noted disparities in awareness of the newer treatments available for myeloma such as CAR T-cell therapies and bispecific antibodies (abstract #2418).
In this edition of Myeloma Today, you will find an article by Dr. Brian G.M. Durie that serves as an overview of some of the top research presented at ASH that focuses on the diagno sis and treatment of myeloma. In this column, I would like to focus on the amazing work being done in two areas: research related to health equity and to the patient experience. Both areas of research are growing in myeloma as we seek to overcome dramatic disparities and as we study the impor tance of patient engagement, quality of life, and support in the myeloma journey.
Equity in healthcare It is a sad reality that a Black patient diagnosed with myeloma will live only half as long as a White patient. This is a complex issue that is rooted in many causes, including the social determi nants of health, the healthcare system, delayed diagnosis, and reduced access to myeloma therapy. More than 20 abstracts at ASH were dedicated to health equity, highlighting both the extent of the problem and potential solutions. If you are reading Myeloma Today in electronic format, clicking on the light blue hyperlinks will take you to the corresponding resources. Accessing the healthcare system is part of the problem. Reduced access can lead to delays in seeing a hematologist (abstract #910). Reduced access results in poorer outcomes (abstract #493). Both of these findings emphasize the need to enhance access to treatment for all patients. This is not only a historical problem but also an ongoing one. Amy Pierre, member of the IMF Nurse Leadership Board (NLB) presented an abstract noting reduced access to CAR T-cell ther apy and clinical trials in African American and Hispanic American patients (abstract #2399). A fascinating abstract titled “to Represent a Black Point of View” demonstrated the importance of talking to patients about clinical trials, especially those who have historically been underrepresented (abstract #1065). I also found it interesting that other factors can also affect survival in myeloma, such as education level and household income; this was even seen in a publicly funded healthcare sys tem in Sweden (abstract #4723). Financial “toxicity” from the cost of drugs and lost productivity is a dire problem in myeloma
Patient-centric research
Although all research is meant to be patient-specific or “cen tric,” there were dozens of ASH abstracts that really focused on the patient experience. I will comment on three specific areas: reducing dexamethasone (dex), quality of life, and patientreported outcomes (PROs) and the CAR T patient experience. One of my favorite abstracts reflects my #downwithdex approach of reducing the dosing of dexamethasone more rapidly than historically customary due to the side effects that patients experience (abstract #1066). This study analyzed two large clinical trials and showed that reducing dex did not have a negative impact on patient outcomes. So… let’s Dial Down the Dex! As patients are living longer with myeloma, there is an increased interest in measuring and improving their quality of life. It is very gratifying to see large trials incorporating these measures, including the KarMMa-3 clinical trial (abstract #96) and the CARTITUDE-4 clinical trial (abstract #1063). This is tremendously important. As I often say, I do not treat myeloma, I treat people! It was fascinating to see how many studies used innovative means to improve the patient experience with CAR T-cell ther apy. These included CAR T as an outpatient procedure (abstract #253), providing an educational video prior to CAR T-cell ther apy (abstract #255), and using a wearable device to monitor patients (abstract #1007). Lastly, arguably the most patient-cen tric abstract was one that was co-authored by Yelak Biru (IMF President & CEO) and provided a patient, caregiver, and provider perspective on cytokine release syndrome (CRS) (abstract #3718). All in all, the past year was an incredible one for myeloma research. I have been privileged to be working in myeloma for over 20 years, and I can honestly say I have not seen a more exciting time in myeloma than right now. MT Stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Friday at 1.800.452.CURE in the U.S. and Canada and 1.818.487.7455 worldwide. To submit your query electronically, email InfoLine@myeloma.org.
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Support Groups
Uniting Voices, Connecting Lives: Empow
90 leaders of 74 myeloma support grou gathered for the 24th annual IMF
By Robin Tuohy IMF Vice President, Support Groups
Over the span of 24 years of remarkable growth and evolution, the IMF has brought together leaders of myeloma support groups for an annual event that increases myeloma knowledge, fosters connections, and nurtures the hope that participating leaders can then take back to the patients and care partners in their local myeloma communities. The IMF Support Group Leaders Summit unites minds and connects hearts, providing a platform for leaders to delve into critical myeloma updates, share invaluable resources, and gain insights and skills to excel in supporting their local groups.
Togetherness and empowerment The 2023 IMF Support Group Leaders Summit embodied the spirit of togetherness and empowerment that defines our community. We welcomed 90 representatives of 74 support groups from the United States and Canada to the event held in Houston, Texas. There were 27 first-time Summit attendees and 63 returning myeloma support group leaders. Upon arrival, participants received a wel come bag filled with resources and goodies, including a variety of T-shirts with unique messages chosen by the leaders themselves!
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The IMF has introduced new ways for group leaders to connect with the IMF Support Groups team that is dedicated to their suc cess, as well as to interact with their peers. In the lead-up to the Summit, the IMF hosted five virtual working group meetings, each dedicated to a specific topic. Such sessions have proven to be instrumental to fostering collaboration and making the Summit experience even more enriching. The in-person 2023 IMF Support Group Leaders Summit was held on October 5-8. The Summit opened with a focus on “Connectivity.” We kicked off the program with a fun video on “The Power of We” and the philosophy of perseverance and resilience represented by the word “Believe,” both inspired by the TV series Ted Lasso. The energy in the room was so uplifting, and the laughter continued throughout the entire Summit. The meeting agenda for Friday and Saturday focused on sessions to educate, engage, and empower participants, all leading to increased hope. Dr. Brian G.M. Durie (IMF Chairman of the Board & Chief Scientific Officer) delivered updates on the cutting-edge “Science Behind the Cures,” as well as myeloma testing, and novel interventions and treatments with the IMF’s signature research program, the Black Swan Research Initiative® (BSRI®). In the IMF’s ASCENT clinical trial, 84% of study participants have achieved the
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wering Myeloma Communities Together
ups from the United States and Canada Support Group Leaders Summit status of minimal residual disease (MRD)-negativity, not even one myeloma cell found in sampled bone marrow plasma cells!! Summit attendees also heard from Yelak Biru (myeloma patient and IMF President & CEO) about “Navigating the Future of Myeloma Care: Strategic Direction of the IMF & Industry Trends.” The day’s topics also included the following highlights: “Tips for Navigating Insurance & Medical Bills” by Joanna Fawzy Doran, Esq. (CEO, Triage Cancer), “Hot Topics in Myeloma” by Joseph Mikhael, MD (IMF Chief Medical Officer), “Health Disparities in Myeloma and their Drivers” by Joseph Mikhael, MD (IMF Chief Medical Officer), “Support Group Leadership, Burnout & Resilience” by Susan Dunnett, PhD, (University of Edinburgh), “The Interconnectedness of our Dietary Habits with Quality of Life & Outcomes in Myeloma” by Urvi A. Shah, MD (Memorial Sloan Kettering Cancer Center), “Emotional Freedom Techniques” by Rebecca Rooney, PhD (Clinical Psychologist, Retired U.S. Army Lt. Col.), “Demystifying the CAR T & Bispecific Experience” Patient & Care Partner Panel Discussion.
The IMF Support Groups Team: Kelly Cox, Becky Bosley, Robin Tuohy, Cecilia Romero, and Nancy Bruno
A wellness excursion To add to all the new information and support offered at the 2023 Summit, we incorporated an offsite wellness excursion to the Houston Botanical Gardens. Leaders had the opportunity to net work while taking part in the guided walking tour through the unique natural environment of plant conservation, followed by an al fresco dinner under the stars. (continues on next page)
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Support Groups SGLS 2023 – CONTINUED FROM PAGE 13
In conclusion The Summit has a special part in my heart. My first experience with the IMF Support Group Leaders Summit was in 2001, after my husband Michael was diagnosed and we were invited to attend as leaders of our local myeloma support group. Immediately, we knew that we found a community of others who understood our experience and who truly cared. The Summit program takes months of dedication for my dear colleagues at the IMF to put together. It takes a village to make this magic happen. I would like to extend my special thanks to the IMF Support Group Team – Becky Bosley, Nancy Bruno, Kelly Cox, and Cecilia Romero – and to the IMF Meeting Planning Team for their diligence and care so that the Summit participants have the best and most enriching experience possible! The Summit is my favorite IMF program and I’m honored to be a part of it.
Support group leaders during a 2023 Summit working session
The 2023 IMF Support Group Leaders Summit was an invaluable learning and networking experience, which was made possible by educational grants from our partners Abbvie, Amgen, BMS, “Jack’s Cure Myeloma Education Grant,” Janssen Oncology, Karyopharm, Pfizer, Regeneron, Sanofi, and Takeda. MT
Visit myeloma.smugmug.com/SG/SGLS2023 to view more photos from the 2023 Summit, and contact the IMF Support Groups Team at email sgteam@myeloma.org.
Yelak Biru
Gail G. McCray, Paulette McCray Neely, and Dr. Joseph Mikhael
Diane Hunter (Alabama), Viki Kimsal (Minnesota), Thomas Goode (North Carolina), Rebecca Rooney (New York), and Valarie Traynham (Illinois)
Michael & Robin Tuohy with group leader Cindy Simmons (Florida)
These care partners of myeloma patients lead the support groups in their areas!
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Myeloma Voices
Myeloma Support Group Leader Voices at ASH By Robin Tuohy IMF Vice President, Support Groups
Every year in December, the Annual Meeting & Exposition of the American Society of Hematology (ASH) serves as a premier opportunity for researchers and clinicians to present and dis cuss the most exciting developments in the field of myeloma. Key opinion leaders in myeloma also have an opportunity to meet and interact at an annual breakfast hosted by International Myeloma Working Group (IMWG). No doubt, ASH is an import ant annual event for healthcare professionals. ASH is also an important annual opportunity for myeloma com munity leaders to share their “voices.” The IMF is committed to fostering interaction between the patient community and the myeloma experts. Every year, the IMF assembles a team of support group leaders who attend ASH in-person and/or virtu ally. Myeloma advocates who engage with and learn from the researchers at ASH then take their newly acquired knowledge back to the members of their local myeloma support groups. At ASH 2023, the IMF Myeloma Voices Team included 14 patient community leaders, 8 attending in-person and 6 participating through a virtual platform. Each team member made the most of this unique opportunity in an atmosphere of support and camaraderie. Below are just some of the insights they shared not only locally but also globally via social media hashtag #IMFASH23 on X (formerly Twitter) and Facebook, as well as through vlogs and blogs at ash2023blogs.myeloma.org: “ In the last 20 years, 19 myeloma treatments have been approved by the FDA. With so many combination therapies and so many clinical trials, we have a better chance than ever before of providing the patient with an excellent treatment. Be your own best patient advocate!” – Jack Aiello, diagnosed in 1995, 18th year attending ASH! “ Studying newer treatments in the real-world setting versus in a clinical trial means that many patients who would not have met the eligibility criteria for a clinical trial were able to receive these treatments.” – Sheri Baker, diagnosed in 2011 “ I’m so grateful to our sponsors for making it possible for myeloma support group leaders to attend ASH and bring it all back to our groups. I am better educated about the future of myeloma through this conference.” – Barb Davis, diagnosed in 2007 “ ASH wasn’t just about the formal presentations. It was also about the camaraderie formed in sharing moments with the IMF Myeloma Voices Team. Their passion for advocacy, their caring nature, and their ability to infuse even the most serious discussions with humor created an environment where growth was inevitable.” – Jessie Daw, smoldering multiple myeloma (SMM) “ Past all the political cockamamie that goes on behind closed doors, everyone there TRULY is passionately committed to what they DO!... I certainly know they’re TRULY investing in DEI issues with sincerity!... Special shoutout to the whole IMF team, it was an honor working alongside everyone!” – Oya Gilbert, diagnosed in 2017 “ My top 3 categories from ASH 2023 included real-world retrospective studies, changes to standard of care for newly diagnosed patients, and new testing methods that could greatly reduce the number of bone marrow biopsies needed.” – Linda Huguelet, diagnosed in 2010
IMF Myeloma Voices Team at ASH 2023: Michael Tuohy, Becky Bosley, Sheri Baker, Linda Huguelet, Oya Gilbert, Robin Tuohy, Teresa Miceli, and Carri Helman
“ I want to be able to eliminate the fear of being diagnosed with multiple myeloma and living with it by shining a light on it.” – Diane Hunter, diagnosed in 2017 “ This was my first year attending ASH. I am so thankful for this opportunity so that I can help educate and bring more hope and encouragement to the multiple myeloma community.” – Adrienne Moore, diagnosed in 2020 “ Time is fleeting. Time is precious. Time is not always on our side. But with time, our tireless myeloma researchers and doctors remain dedicated to finding new and better treatment options that extend our time to the next treatment and enhance our time from diagnosis to hope!” – Michael Tuohy, diagnosed in 2000 “ How wonderful to see so many amazing scientists and myeloma specialists working so hard… to help treat myeloma patients move beyond managing myeloma to celebrate the gift of each day ahead!” – Jill Zitzewitz, diagnosed in 2017 I’m sincerely grateful to the IMF’s industry partners BMS, Janssen, Karyopharm, Regeneron, and Takeda for sponsoring the Myeloma Support Group Leader Voices program at ASH 2023. To learn about research presented at ASH 2023, read the over views by Dr. Brian Durie (see page 6) and Dr. Joseph Mikhael (see page 9). MT
Please contact Robin Tuohy at rtuohy@myeloma.org or visit myeloma.org/support-groups for information about joining a local myeloma support group or launching a new one in your area.
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Recorded at the 2023 ASH Meeting
Watch the replay
Replay the Support Group Leader discussion recorded at ASH 2023! Visit videos.myeloma.org and click on the FACEBOOK LIVE tab. WATCH NOW WINTER 2024
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International Events
The IMF’s Asian Myeloma Net
2023 AMN series of meetings brings to and the patient community from
By Daniel Navid IMF Senior Vice President, Global Affairs
The IMF’s Asian Myeloma Network (AMN), comprising 166 experts from China, Hong Kong, Japan, Korea, Malaysia, Philippines, Singapore, Taiwan, Thailand, and Vietnam, held its 2023 annual series of meetings on October 19–22 in Bangkok, Thailand. The AMN carries out significant research in myeloma. Currently, there are eight AMN clinical trial projects across the region. The AMN also conducts physician training and provides patient sup port. The AMN has also recently launched the virtual Asian Tissue Bank, providing a catalog to share biobank testing results online, a first initiative pursuant to the IMF’s International Myeloma Working Group (IMWG) planned global Biobank. AMN members also partic ipate in the global Immune Therapy Registry for myeloma.
AMN Summit The AMN Summit has become the most sought-after invitation for Asian myeloma doctors. In order to maintain a workshop
Dan Navid (IMF Sr VP, Global Affairs)
format, the 7th AMN Summit in Bangkok limited participation to 104 doctors from the region, with active support from observers from 13 industry partners. Cutting-edge research information was provided by international and Asian speakers, including the faculty from the AMN Master Class for Asian hematologists. Following a keynote address by Dr. Bruno Paiva, discussions were held on the latest developments in sessions devoted to “Cure vs. Control,” “Immune Therapy,” “MRD,” “New Therapeutic Agents in Development,” and “Smoldering Myeloma/Screening.” Thereafter, the meeting broke into working groups to develop AMN projects and Asian treatment guidelines on the themes of “Infection,” “Bone/Imaging in Asia,” “Smoldering Myeloma/Screening,” and “Other Plasma Cell Disorders.” The Summit reviewed the status of the AMN Clinical Trials and the AMN Tissue Bank, and concluded with an analysis of priority needs for treatment in Asia based on resource availability.
Dr. Juan Du presents the AMN Summit session on CAR T-cell therapy in the Asian setting
Myeloma experts from the region take part in the 2023 AMN Summit
The 7th Summit of the IMF’s Asian Myeloma Network (AMN) was held in Bangkok with the participation of more than 100 myeloma experts from from China, Hong Kong, Japan, Korea, Malaysia, Philippines, Singapore, Taiwan, Thailand, and Vietnam
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work Continues to Surge Ahead gether myeloma experts, treating doctors, all member countries and regions For the first time, the AMN Summit honored one of the AMN mem bers, Dr. Kazuyuki Shimizu, recognizing his long and excellent ser vice in the fight against myeloma in Asia. Dr. Shimizu is the first recipient of the AMN Distinguished Service Award.
studies were analyzed, and a course exam administered, with certificates provided to the successful participants.
AMN Master Class
AMN Patient Forum
The 3rd AMN Master Class was a two-day intensive training pro gram for mid-level Asian hematologists. The recent course in Bangkok featured 44 on-site participants from all AMN coun tries and regions, as well as 20 participants joining virtually from a studio in Beijing. The international faculty included Dr. Brian G.M. Durie, Dr. Wee Joo Chng, Dr. Jean Luc Harousseau, Dr. James Chim, Dr. Jeffrey Huang, Dr. Thomas Martin, Dr. Kihyun Kim, and Dr. Hiroshi Handa. In addition to lectures and discussions on diagnostic criteria, prog nositic factors, and risk stratification, as well as existing treatment options in Asia and new options including immune therapy, case
Given the success of the AMN Master Class, plans are being made to expand this activity significantly in the future. The one-day 3rd AMN Patient Forum provides the opportunity for patient organization representatives from the AMN countries and regions to meet and compare experiences. In Bangkok, some 40 representatives were present from eight of the AMN countries and regions. Led by AMN expert Dr. Daryl Tan of Singapore, each group presented its activities with lessons learned from the successful Korean Blood Disease Cancer Association showcased. During the Forum, the IMF unveiled the AMN Patient Tool Kit, providing myeloma patient informational materials and brochures in several local languages. In an open discussion on future needs, priority project activities in each country and region were identified for follow-up attention. Yelak Biru (IMF President & CEO) explained the work of the IMF’s Global Myeloma Action Network (GMAN) and encouraged the Asian groups to participate in this work. Adjacent to the Patient Forum, the Thai and Korean groups held a bilateral meeting establishing a cooperative program for imple mentation in 2024.
Dr. Kazuyuki Shimizu, the first recipient of the AMN Distinguished Service Award, with Dr. Brian G.M. Durie
The 2023 AMN annual events held in Bangkok were extremely successful, solidifying the IMF’s preeminent position for myeloma work in Asia. We thank our industry partners for supporting these initiatives and activities. Platinum Sponsors: Amgen, Bristol Myers Squibb, and Sanofi. Gold Sponsors: Abbvie, Janssen Pharmaceutical Companies of Johnson & Johnson, and Binding Site. Silver Sponsors: Antegene, GSK, Pfizer, and Sebia. Local Sponsors: BeiGene and Takeda China. MT
The 2024 AMN Summit, Master Class, and Patient Forum will be held in Seoul, South Korea. Visit amn.myeloma.org for more information about AMN initiatives and activities. Myeloma patients and representatives of patient organizations in the region gathered for the 3rd AMN Patient Forum
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Philanthropy
Myeloma Survivor, Advocate, and… Disruptor! Kent Oliver supports the transformative potential of the IMF’s innovative Myeloma Knowledge Platform
By Sylvia Dsouza IMF Vice President, Development
Kent Oliver, a longstanding donor, resilient myeloma survivor, advocate, and strong voice for all myeloma patients and care partners, boldly said that he would like to be a “disruptor.” During late summer in his hometown of Hattiesburg, Mississippi, Kent shared his modus operandi at a meeting with me and with Yelak Biru (IMF President & CEO). Kent’s call for action was heard by the IMF team. Kent has proven his dedication to serving the myeloma commu nity. Diagnosed with myeloma in 2015 at the age of 34, Kent’s journey has been marked by his compassion and generosity. Hattiesburg has been home to Kent, his wife Candace, and their daughters Annie (11) and Charlotte (8) for their entire lives. They are deeply woven into the community fabric, feeling a strong sense of belonging and connection to their neighbors. The Olivers have chosen the path of giving back, with Kent lead ing this charge. For eight consecutive years, he has organized a peer-to-peer fundraiser in Hattiesburg called “Laughs 4 Life” to support the IMF and other organizations working toward mak ing life better for myeloma patients. For the IMF alone, Kent’s “Laughs 4 Life” event has funded four Senior Brian D. Novis (BDN) Grants totaling more than $320,000. Established in 1995 to honor one of the IMF’s co-founders, these grants are awarded annually to Senior and Junior investigators to expand research in the field of myeloma and to improve patient outcomes. But in the spirit of a true disruptor, Kent considered his fundrais ing feats and asked, “How can I do more?” For Kent, that “more” had to be transformative. It had to apply his philanthropic vision and passion to find a cure for myeloma and a better quality of life for patients. It had to challenge the status quo of systems, services, and existing processes for the myeloma community.
Kent & Candace Oliver with daughters Annie (11) and Charlotte (8)
moving from the time of shock when first diagnosed to the time of hope by embracing and living fulfilling and purposeful lives.” Yelak continued that the MKP could do just this: “accelerate the time to hope.” He described MKP as a comprehensive patient and myeloma community platform poised to disrupt the way patients’ needs are met and supported throughout their myeloma journey. Yelak went on to explain that the IMF was seeking funders to see the MKP through launch. With this, Kent found a disruptive action he could stand behind. He said, “This is an opportunity that I cannot pass up, or I’ll live to regret it.” The IMF is grateful for Kent’s determination to give and to disrupt. Thanks to his support of the MKP team, the prog ress of the MKP is underway, with a soft launch scheduled for the summer of 2024.
Kent has a keen understanding of technology, so when Yelak Biru shared the IMF’s strategy for the future tied to a new initia tive called the Myeloma Knowledge Platform (MKP), Kent saw the value in the digitization of patients’ access to information and the enhanced interconnectivity between patients and their treatment teams.
Kent’s commitment to this cause will fund resources needed to accelerate the next phase of the MKP’s development while also igniting the collective spirit of the myeloma community. His philanthropic investment is significant and transformative for the future of myeloma research and patient support. Kent’s will ingness to help the IMF prioritize the MKP project shows that he knows what it takes to revolutionize patient care and treatment efforts. We at the IMF are inspired, and we hope you are too. MT
A dialogue flourished between Yelak and Kent. Yelak shared his vision for the improvement of patients’ lives. He explained how the IMF wishes to “expedite the ‘time to hope’ from the ini tial diagnosis of myeloma. This ‘time’ encompasses the crucial moments when patients must educate themselves, forge mean ingful connections, and navigate the myriad treatment options to find what best suits their needs. This remarkable journey is
YOU can play an integral part in the fight against myeloma by becoming our philanthropic partner and supporting the IMF’s four founding pillars: Research, Education, Support, and Advocacy. Contact Sylvia Dsouza at sdsouza@myeloma.org if you’re interested in discussing major gifts, planned giving, stocks, IRAs, or bequests. To make a direct donation to the IMF, please go to donate.myeloma.org.
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Advocacy
IMF Grassroots Patient Advocacy
YOU can help drive meaningful change for patients with myeloma By Emma Hatcher IMF Global Vice President, Patient Engagement & Advocacy Every day, critical healthcare issues are discussed on Capitol Hill, in the White House, within federal agencies, and by state and local decision-makers. The individual advocacy of our patients, family members, care partners – and collective advocacy of our community – is a critical mechanism to influence the actions of Congress and of other key decision-makers. Elected officials depend on hearing from voters to shape their policy perceptions. They also rely on subject-matter experts to know how policy will affect real patients. In our democratic system, all citizens have the right to advocate. As constituents, the myeloma patient community is an indispens able part of this democratic system. This means that patients with myeloma and their care partners are uniquely qualified to speak to their elected officials about their experiences, challenges, and the impact that policy decisions have on them and the many oth ers in the U.S. whose lives are touched by myeloma.
The power of grassroots advocacy
Patient advocates are more powerful than they realize when it comes to influencing members of Congress and other deci sion-makers. Patients and care partners carry more weight when it comes to the actions by an elected official because community advocates consist of actual constituents. In 2015, a study by the Congressional Management Foundation (CMF) asked offices on Capitol Hill for the most meaningful ways to move the needle on an issue. Seven of the top 10 responses related specifically to hearing from their constituents. The Congressional Communications Report found that congres sional staff see constituents as the most “valuable source of infor mation,” followed by white papers, lobbyists, inside-the-beltway publications, and survey and poll results. The voices of individuals living with myeloma can have far-reach ing positive impacts by providing policymakers with the informa tion they need to make decisions and, in turn, influence legislation and regulations.
Your voice is needed
Even policymakers who want to do right by patients cannot do so without the right information. In 2011, Dr. Donald Berwick, former Director of the Centers for Medicare & Medicaid Services (CMS) said: “There are too many examples that show how our system can fail to meet patients’ needs. These problems are not a reflection on the many doctors, nurses, and other professionals who work tirelessly to deliver the highest quality care they can. Instead, they reflect a delivery system that’s not always designed with the patient in mind.” Advocacy is crucial to the IMF’s mission to improve the quality of life of myeloma patients while working toward prevention and a cure. In the U.S., the IMF’s advocacy priorities fall into four major categories: (1) providing a voice for patients with myeloma, (2) ensuring access to care, (3) expanding screening and diagno sis, and (4) supporting research and emerging therapies. In 2024, the IMF is focusing on our Grassroots Advocacy Program as a critical component to the success of our policy agenda. As
myeloma advocates, we recognize the invaluable role of the patient voice in shaping policies and influencing change. Our comprehensive program will be comprised of an engaged, trained, and activated team of patient advocates. These grassroots advocates will serve as the local voice to pol icymakers, play a crucial role in advocating for legislative and regulatory issues at both the state and federal levels, and ensure that the voice of myeloma patients is not just heard but holds the power to drive meaningful policy change.
Core activities
The IMF is connecting with the many local myeloma support groups across the U.S. for the following: Insights – Provide an ongoing, formalized cadence of listening sessions to gain feedback and insights on priorities, challenges, and a real-time understanding of myeloma patient experiences. Training – Recruit and train dedicated patient and care partner volunteers to become grassroots advocates. Develop and dis seminate educational materials that explain key policy issues, legislative developments, and advocacy goals to community members. Engagement – Provide ongoing policy and advocacy-focused educational workshops and webinars to empower advocates with the knowledge and skills needed to effectively communi cate their stories and concerns to policymakers. Interaction – Organize meetings between advocates and policymakers, including visits to legislative offices, to share personal stories. YOU can be part of the inaugural group of patient advocates who will help chart the future by advancing the IMF mission through advocacy. Contact us at advocacy@myeloma.org. We welcome your engagement, questions, and ideas. MT
Visit advocacy.myeloma.org to read about the IMF’s advocacy activities and subscribe to the IMF Advocacy Newsletter at subscribe.myeloma.org. Please join us in welcoming Emma Hatcher as the IMF’s Global Vice President for Patient Engagement & Advocacy. Emma brings to the IMF her extensive 20+ years of healthcare experience. Notably, she spent 15 years in the pharmaceutical industry with a focus on rare disease treatments in global markets. Emma’s expertise was built by working at the inter section of health policy, patient advocacy, and strategic planning, a background built through roles spanning industry, consulting, and trade associations. Emma holds a Master’s Degree from Brown University in Public Health with a Policy concentration and a Bachelor of Sciences from the University of Rhode Island. Emma resides in the Washington D.C. area with her husband and two children.
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INTERNATIONAL MYELOMA FOUNDATION Founders Brian D. Novis • Susie Durie • Dr. Brian G.M. Durie Board of Directors Chairman Dr. Brian G.M. Durie Chairperson-Elect Dr. S. Vincent Rajkumar Jack Aiello Andrew Kuzneski, III Christine Battistini Dr. Robert A. Kyle Yelak Biru Prof. Dr. Heinz Ludwig Prof. Dr. Mario Boccadoro Dr. Edith Mitchell Loraine Boyle Charles Newman Martine Elias Poornima Parameswaran George T. Hayum Matthew Robinson Jason Katz E. Michael D. Scott Benson Klein Sanjay Singh IMF Executive Team Yelak Biru President & Chief Executive Officer Peter Anton Vice President, Marketing Mimi Choon-Quinones Senior Vice President, Global Advocacy, Access, Policy & Research Sylvia Dsouza Vice President, Development Dr. Brian G.M. Durie Chief Scientific Officer Emma Hatcher Global Vice President, Patient Engagement & Advocacy
Dr. Joseph R. Mikhael Chief Medical Officer Diane Moran Senior Vice President, Business Relationship Management Daniel Navid Senior Vice President, Global Affairs Lisa Paik Executive Vice President, Research & Operations Jennifer Scarne Chief Financial Officer Robin Tuohy Vice President, Support Groups
IMF Staff Betty Arevalo Missy Klepetar Manager, Inventory Control Coordinator, InfoLine Becky Bosley Sapna Kumar Director, Support Groups Marketing Strategist Brittnay Brandon Phil Lange Coordinator, Meetings Director, Accounting Nancy Bruno Jason London Director, Support Groups Manager, Sarah Chambliss Marketing & Communications Meeting & Project Manager, Jim Needham Medical Programs Publication Design Kelly Cox Meghan O’Connor Sr Dir, Regional Community Workshops Meeting & Project Manager, and Director, Support Groups Content & Communications Danielle Doheny Selma Plascencia Director, Public Policy & Advocacy Senior Director, Operations Serdar Erdoğan Annabel Reardon Director, GMAN and Senior Director, European & Middle Eastern Program Operations & Chief of Staff Patient Programs Joy Riznikove Jon Fitzpatrick Database Administrator Senior Manager, Meetings & Events Lauren Gapinski Administrative Assistant, Travel & Registration Sherrie Guerrero Senior Director, Human Resources Paul Hewitt Coordinator, InfoLine Kevin Huynh Coordinator, Tech Solutions Katie Ives Meeting & Project Coordinator Marya Kazakova Editor-in-Chief, Publications Ilana Kenville Director of Development, Peer-to-Peer Fundraising
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Cecilia Romero Project & Technology Manager, Support Groups
Miko Santos Senior Manager, Tech Solutions Narmeen Shammami Sr Research Project Coordinator Brando Sordoni Senior Associate, Accounting & Distribution Rafi Stephan Assistant to the President & Chief Executive Officer Daria Tabota Coordinator, Marketing & Communications
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April 18, 2024 | 6:00pm EST ◆ Edison Ballroom ◆ 240 W 47th Street, New York, NY 10036
IMF Calendar of 2024 Events Due to COVID-19 policies, adjustments to the calendar may be made as needed.
Mar 2 IMF Regional Community Workshop (RCW) – San Diego, CA Mar 15-16 IMF Patient & Family Seminar (PFS) – Boca Raton, FL Mar 23 IMF Regional Community Workshop (RCW) – Seattle, WA
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IMF Patient & Family Seminar (PFS) – San Francisco, CA IMF Regional Community Workshop (RCW) – Atlanta, GA IMF Annual Gala – New York, NY
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