20 INNOVATION AND 23 IMPACT REPORT
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
myeloma.org thhp://myeloma.org
“This 'time to hope' encompasses the crucial moments when patients must educate themselves, forge meaningful connections, and navigate myriad treatment options to find what best suits their needs. This remarkable journey of finding hope happens when a patient moves from the time of shock at initial diagnosis to the time of hope when that patient is able to live a fulfilling and purposeful life.”
Yelak Biru IMF President & CEO, and 28-year myeloma survivor
OUR WHY THE PATIENTS WE SERVE AND OUR RELENTLESS PURSUIT OF FINDING A CURE As the International Myeloma Foundation (IMF) enters our 34th year of service to the myeloma community, we want to share with you our plan for transformation. Last year, we shared our 2023-2027 Global Strategy Plan. In this plan, we highlighted our three key objectives for the future of the IMF: 1. Raise the bar We will examine the why of all our actions to ensure they are purpose-driven, meaningful, and effective. 2. Broaden our reach We will address unmet patient needs by expanding our reach to diverse and underserved populations in everything we do. 3. Innovate every step of the way We will provide those who need it most with what they need the most, throughout their myeloma journeys. Within this 2023 INNOVATION AND IMPACT REPORT, we highlight new as well as proven programs that best serve your needs, such as the M-Power Project, the Global Myeloma Action Network, and Support Groups. We also dive into how we have broadened our reach to meet unmet needs—some examples include the Medical Student Scholars for Health Equity in Myeloma Mentoring Program for African American medical students (page 9), and new series of educational videos for nurses and one for patients (page 11). Finally, and most impactfully, we innovate every step of the way with our leading research initiatives such as the Immune Therapy Registry (page 4), the Virtual Tissue Bank (page 5), and with our digital transformation highlighted on pp. 6-7.
TABLE OF CONTENTS
myeloma.org
Immune Therapy Registry ..................................................................................................................... 4
Virtual Tissue Bank....................................................................................................................................... 5 Myeloma Knowledge Platform ......................................................................................................... 6-7 The IMF’s Global Reach.............................................................................................................................. 8 The IMF’s U.S.-based Programs and Impact ................................................................................. 9 Awareness Campaigns and Educational Videos .................................................................. 10-11 International Myeloma Working Group Summit .................................................................. 12-13 Cancer: It’s a Family Affair and Toward the Future of Myeloma ....................................14-15 iStopMM Demonstrates That Myeloma Screening Is the Way to Go ..............................16 How Close Is the IMF to Curing or Preventing Myeloma? ...................................................17 Our Overall Impact on Patients and Care Partners ............................................................18-19
From advocating for those who cannot advocate for themselves to consistently innovating with our research initiatives, we are committed to preventing disease progression, enhancing treatments, accelerating drug development, and ultimately improving patient outcomes. The IMF asks you to envision a new story for our future, one where myeloma care knows no boundaries — a future where access to care is expanded in more countries, where patients are living longer and better-quality lives, and where the pursuit of a cure is relentless. Each program and statistic highlighted in this report shines a light on the steps we are taking to create this future. We are here with you along your myeloma journeys, and the story of that future begins now.
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The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
WHAT IS THE IMF’S IMMUNE THERAPY REGISTRY? The Immune Therapy Registry, an International Myeloma Working Group (IMWG) research project, is the first global clinical database study to prospectively collect data from patients with relapsed and/or high-risk myeloma receiving immune therapies. Data are collected from the time of diagnosis and are updated every 6 months. The study will include a total of approximately 6,000 patients from various IMF sites worldwide. The database is housed online in a secure password-protected and Food and Drug Administration (FDA)/HIPPAcompliant format with restricted access. A third-party vendor has helped build and will maintain the master electronic database.
This database allows researchers to examine patient and disease characteristics to better understand the best candidates for each novel therapy. Also, it may help researchers to better understand how and in what sequence these immune therapies are best used in practice. The application of these novel therapies and the outcomes achieved will help inform future research and clinical applications. This, in turn, will address an unmet need to identify more effective multiple myeloma treatments to improve patient outcomes. Most importantly, the data will ensure that the right patient is getting the right treatment at the right time. WHERE IS THE IMF’S IMMUNE THERAPY REGISTRY ACTIVE? The Immune Therapy Registry is a global platform that includes major sites in the United States, Europe, and Asia. One aspect of it is that the assessment of real-world access to the various immune therapies will occur as these therapies receive regulatory approval and can become available with or without reimbursement. Unfortunately, only a few sites outside of the U.S. have both approval and reimbursement in place. WHERE IS THE IMF’S IMMUNE THERAPY REGISTRY HOUSED? This immune therapy registry is housed digitally at the University of California San Francisco. WHAT ANSWERS WILL IT REVEAL? Investigators will use the Immune Therapy Registry to determine how different therapies work. In particular, what could be the best sequencing of these drugs? Is it better to give one before or after the other? And does it affect the outcomes or toxicities? To learn more about the Immune Therapy Registry, visit https://www.myeloma.org/ international-myeloma-working-group/ imfs-immune-therapy-registry.
INNOVATION
WHAT IS THE IMF’S VIRTUAL TISSUE BANK? The Virtual Tissue Bank (VTB) is a combined research project of the IMF’s International Myeloma Working Group (IMWG) and Asian Myeloma Network (AMN) with Prof Wee Joo Chng piloting the project for AMN in Singapore at the National University Cancer Institute and Dr. Thomas Martin leading the global effort at the University of California at San Francisco (UCSF). WHY IS THERE A NEED FOR A VIRTUAL TISSUE BANK? Over the years in the myeloma community, researchers have tried to share samples and send samples from one lab to another. This has been very difficult for the quality of the samples and variations in the testing. With the VTB, blood and bone marrow samples are still tested at local centers. The results are gathered, and the samples are stored right there on the spot instead of being shipped to another location. Shipping samples could result in those samples arriving in poor quality. The idea of the virtual tissue bank is to collect the data from all of these different sites. The IMF’s virtual tissue bank has been embraced by centers from all around the world that have signed up to participate. THE IMF’S VIRTUAL TISSUE BANK: WHAT IS THE SCOPE OF THE PROJECT? The basic concept of the VTB is that data will be shared through a web-based portal. Since each testing site tends to retain and process their own samples, the idea of shared data while retaining local ownership of samples is a favorable approach. Using this approach, common protocols for sample collection storage and processing may be possible. By doing this, the tissue acquisition and testing is standardized throughout the collaborating group’s network. WHAT ARE ONGOING AND PLANNED PROJECTS OF THE IMF’S VIRTUAL TISSUE BANK? The following are examples of ongoing and planned projects: •
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Extramedullary Disease Patients with extramedullary disease tend to have treatment resistant high-risk features. Studies are planned
with paired bone marrow samples to assess genetics with Next-Generation Sequencing (NGS) techniques and single cell spatial trans-criptomics to understand the underlying resistance mechanisms. •
Single-cell Profiling Single-cell profiling of both myeloma and immune cells can be conducted linked to treatment with the exciting new immune therapies such as CAR T cells and/or bispecific antibodies.
•
Germline DNA Studies Several thousand samples are predicted to be available for DNA analyses which can be conducted from the large number of accumulated samples from the groups. The VTB project is up and running. The IMF looks forward to many productive projects as the project progresses, and more data sets are accumulated globally. To learn more the VTB, visit https://www.myeloma.org/asian-myelomanetwork/imfs-virtual-tissue-bank.
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The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
INNOVATION
HOW WILL THE IMF’S MYELOMA KNOWLEDGE PLATFORM WORK? JORDAN’S STORY Just diagnosed with multiple myeloma, 65-year-old widow Jordan Johnson turns to the IMF https://www.myeloma.org/international-myeloma-working-group/imfs-immune-therapy-registry website (myeloma.org) for support. She registers on the site and explores personalized topics https://www.myeloma.org/international-myeloma-working-group/imfs-immune-therapy-registry like financial aid, clinical trials, treatment pathways, and emotional wellness. The website's https://www.myeloma.org/international-myeloma-working-group/imfs-immune-therapy-registry chat interface helps her find local support groups and schedule a call with the IMF Infoline.
https://www.myeloma.org/asian-myelomanetwork/imfs-virtual-tissue-bank
HARNESSING THE POWER OF DATA FOR THE FUTURE OF THE INTERNATIONAL MYELOMA FOUNDATION Imagine being served up content that met you where you are in your patient journey. You visit the IMF website (myeloma.org) and learn what clinical trials you qualify for, or which myeloma experts can best help you in your region. To better serve its patient community, the International Myeloma Foundation (IMF) has deployed Data Lakes for Nonprofits – powered by Amazon Web Services (AWS) and offered by AWS and Salesforce. The goal is to create a more patient-focused digital ecosystem and advance the IMF’s data strategy. WHAT DO DATA LAKES DO? Data lakes store relational data such as data from customer relationship management (CRM) systems and enterprise resource planning (ERP) software. WHAT IS A CRM? A CRM is used by the IMF to manage information about our donors, volunteer fundraisers, advocates, and other key stakeholders. CRM systems provide a centralized platform to manage meaningful relationships with our supporters, streamline administrative tasks, and optimize our fundraising efforts.
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WHAT IS ERP SOFTWARE? ERP software aims to centralize and optimize various operational processes, providing a comprehensive view of the IMF’s activities. This type of software enhances efficiency, improves fiscal management, and facilitates compliance with regulatory requirements. So, a data lake can store all of this ‘structured’ data in its native format. But that’s not all. It also stores non-relational, unstructured data from the IMF’s mobile apps and social media channels. All this data can flow into the data lake so the IMF can discover relationships amongst the previously siloed data, query that data, and analyze it—meaningful analysis like this can literally save lives! WHAT DOES THE INTERNATIONAL MYELOMA FOUNDATION (IMF) MEAN BY A ‘PATIENT-FOCUSED DIGITAL ECOSYSTEM’? Using the information stored in the data lake, the HIPAA-compliant Myeloma Knowledge Platform — a patient-friendly digital ecosystem — will provide personalized recommendations to patients according to where they are in their myeloma journey.
Jordan leaves the doctor's office feeling optimistic and supported, grateful for the knowledge gained from the IMF and her oncologist. She knows she can rely on the International Myeloma Foundation throughout her journey.
Dr. Dorsey consults with a specialist, Dr. Meyers, and they collaborate on treatment decisions.
Isabella Fuentes, a member of the Infoline team, uses the new IMF Knowledge Platform to manage patient interactions. Isabella's dashboard notifies her of a new patient, Jordan, who has been actively using IMF resources. Isabella calls Jordan, discusses her condition, clinical trials, and financial aid, providing valuable information and support.
Jordan appreciates the personal connection and prepares for her appointment with her oncologist Dr. Linda Dorsey. Dr. Dorsey accesses the IMF's portal, which recommends a treatment path and specific drugs for Jordan, along with two clinical trials.
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IMPACT
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
THE IMF’S U.S.-BASED PROGRAMS AND IMPACT IMF ADVOCACY The IMF has a U.S.-based Advocacy team that continues to take actions for legislation in support of oral parity.
IN 2023, THE IMF ADVOCACY TEAM
MOBILIZED 100+ VOLUNTEERS IN
THE MYELOMA COMMUNITY
IMF M-POWER PROJECT The IMF’s M-Power Project seeks to empower health-care professionals, community leaders, neighborhoods and families to break down existing barriers to diagnosis, treatment access, and disease awareness in the African American community. Together, the IMF and the community are making a difference and pushing the needle forward just a bit more to help save lives. Visit https://mpower.myeloma.org to learn more.
Global leaders of organizations affiliated with GMAN rejoice at the annual GMAN Summit.
IMF's Asian Myeloma Network members at the 2023 annual summit.
THE IMF’S GLOBAL REACH The IMF’s Global Myeloma Action Network (GMAN) is composed of multiple myeloma patient organization leaders around the world with the global mission of improving the lives of myeloma patients, raising awareness of multiple myeloma, enhancing the capabilities of patient advocacy groups, building the capacity of local myeloma organizations, and increasing worldwide access to medicine and treatment. Every year, GMAN holds a Summit with leaders of myeloma organizations around the world.
The IMF’s Asian Myeloma Network with 66 experts from China, Hong Kong, Taiwan, Japan, Korea, ‘Malaysia, Philippines, Singapore, Thailand and Vietnam, held its 2023 annual series of meetings from October 19-22 in Bangkok, Thailand. The AMN carries out significant research, physician training, and patient support. Every year, AMN holds an annual Summit and collaborative meetings. Learn more about AMN at https://www.myeloma.org/asian-myeloma-network.
IMF NURSE LEADERSHIP BOARD The IMF established the Nurse Leadership Board (NLB) is the pioneering professional partnership to advocate for oncology nurses specializing in myeloma patient care. NLB nurses are integral to all facets of the IMF's activities, contributing to Patient and Family Seminars, Regional Community Workshops, teleconferences, support groups, publications, and the IMF website.
IN 2023, 4 M-POWER WORKSHOPS
REACHED 200+ LIVE PARTICIPANTS
AND 3,500+ ARCHIVE VIEWERS
Visit https://nlb.myeloma.org to learn more.
NLB’S OVERALL
REACH IN 2022
16K+ PARTICIPANTS
IMF’S 10TH GLOBAL MYELOMA
ACTION NETWORK (GMAN) SUMMIT
UNITES 30+ GLOBAL
IMF’S ASIAN MYELOMA NETWORK
30 COUNTRIES
IN THE ASIA-PACIFIC REGION WITH
ADVOCACY LEADERS FROM
EDUCATIONAL GRANTS Additionally, GMAN awards Susie Novis Durie Educational Grants to make an impact on sustainable, innovative projects of empowered organizations in different countries.
TO DATE, GMAN HAS FUNDED
19 PROJECTS THROUGH THE SUSIE NOVIS DURIE EDUCATIONAL GRANTS
CONDUCTED 7 MEETINGS MORE THAN 350 ATTENDEES IMF'S ASIAN MYELOMA NETWORK COORDINATED 7 CLINICAL TRIALS
IN THE ASIA-PACIFIC REGION IN 2023
Finally, the IMF’s International Myeloma Working Group’s activities for 2023 are highlighted on pp. 12-13.
IMF SUPPORT GROUP LEADERS SUMMIT The IMF hosts an annual Support Group Leaders Summit to help facilitate the training and education of these leaders who take their newly acquired skills back to their support groups in their respective U.S.-states. The theme for the 2023 Support Group Leaders Summit was “Uniting Voices, Connecting Lives: Empowering Myeloma Communities Together.” Visit http://support.myeloma.org to learn more.
Medical scholar participant presents her abstract to mentors of the program.
Also in 2023, the IMF’s M-Power Project, partnering with W. Montague Cobb/NMA Health Institute’s Cobb Scholars Program, launched the Medical Student Scholars for Health Equity in Myeloma Mentoring Program for African American medical students. Learn more at https://mmsm.link/Medical-Scholars. https://mpower.myeloma.org
THE IMF SUPPORT GROUP
LEADERS SUMMIT
WAS ATTENDED BY
90 SUPPORT GROUP LEADERS FROM 74 SUPPORT GROUPS, INCLUDING 63 RETURNING LEADERS
Learn more about GMAN at https://gman.myeloma.org. 8
AND 27 FIRST-TIMERS 9
IMPACT
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT https://www.myeloma.org/asian-myeloma-network
https://mmsm.link/Medical-Scholars
IN 2023, THE IMF BUILT AWARENESS WITH OUR TENTPOLE CAMPAIGNS We also engaged the IMF Global Myeloma ACTION Network (GMAN) and collaborated with sister organizations in Latin America. IMF Director of GMAN | Europe and Middle Eastern Patient Programs Serdar Erdoğan, who worked alongside global myeloma organizations, said, "Through their myeloma stories, MAM participants shared something special from their perspective while contributing to the collective definition of what myeloma truly means to the global community."
http://www.myeloma.org/support-groups https://mmsm.link/Medical-Scholars
This video still is from a mash-up video that highlighted messages of hope and resilience during the 2023 MAM campaign.
https://gman.myeloma.org Even though multiple myeloma is reported in nearly 160,000 people globally, the disease is still often unknown by many — including some healthcare professionals. That’s why the International Myeloma Foundation (IMF) firmly plants two tentpoles in the ground at two separate times of the year: Myeloma ACTION Month (MAM) in March and Blood Cancer Awareness Month (BCAM) in September. These campaigns bolster awareness of multiple myeloma globally, and ultimately, can save lives.
IMF’S 2023 MAM IMPACT
41 MILLION+ 45 COUNTRIES
MYELOMA ACTION MONTH: ONE COMMUNITY. ONE QUESTION. COUNTLESS STORIES. In 2023, Myeloma ACTION Month asked the global myeloma community: “What is your #MYelomaSTORY?” Participants uploaded their videos to a tool on the IMF website http://myeloma.org. From that, a mash-up video was born: It highlighted that messages of hope and resilience resonate around the world, in different countries and in many languages. 10
During September, members of the myeloma community gathered in Los Angeles for a Patient & Family Seminar and showed their support for the BCAM campaign.
IMF’S 2023 BCAM IMPACT
19 MILLION+ This graphic is an example of patients’ quotes that were shared on social media during Myeloma Action Month. To learn more about this campaign, visit http://mam.myeloma.org. Then, in September, the IMF focused our lens on Blood Cancer Awareness Month, which centered on the question, "Do you know myeloma?" The campaign had two objectives: 1. 2.
KNOW Myeloma. The IMF educated the worldwide community about the disease, healthcare access, and treatment availabilities. NO Myeloma. The IMF advanced support our mission for disease prevention and a cure.
For BCAM, the IMF hosted 4 Facebook lives which had 4,467 cumulative views
64 COUNTRIES
To learn more about BCAM, visit http://bcam.myeloma.org.
THE IMF’S NEW VIDEO SERIES FOR 2023 MYELOMA UNIVERSITY’S
6 VIDEOS GARNERED
2,300+ VIEWS
ALSO, IN 2023, THE IMF ADDED TO OUR LIBRARY OF EDUCATIONAL VIDEOS
MYELOMA MADE SIMPLE
In 2023, the International Myeloma Foundation released 2 video series that made myeloma simpler and easier to understand.
The second series of educational videos from the IMF is “Myeloma Made Simple.” In each episode, IMF Chief Medical Officer Dr. Joseph Mikhael tackles complex topics about multiple myeloma in an easy-to-understand format for patients and families—whether drug classes, new treatments, shared decision making, and more.
The first of these series is Myeloma University, brought to the public by the IMF’s Nurse Leadership Board (NLB). This FREE online educational program is designed for nurses and other healthcare professionals to gain knowledge about multiple myeloma.
6 VIDEOS GARNERED
3,800+ VIEWS
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INNOVATION
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
http://bcam.myeloma.org
http://mam.myeloma.org
http://myeloma.org
Top: Dr. María-Victoria Mateos leads a panel at the IMWG Summit. Photo right: IMF Chairman of the Board and Chief Scientific Officer Dr. Brian G.M. Durie with esteemed colleague and IMWG member Dr. S. Vincent Rajkumar.
Participants gather for the Plenary Session during the IMWG Summit.
IMWG SUMMIT SHINES A LIGHT ON NEW LEARNINGS IN THE FIELD OF MYELOMA
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The 2023 Summit of the IMF's International Myeloma Working Group (IMWG) brought together more than 130 leading myeloma researchers for a three-day program of meetings. The IMWG is focused on improving outcomes for myeloma patients and is considered the most prestigious organization for myeloma researchers globally. At the annual IMWG summit, IMWG members work collaboratively to identify, support, and implement promising research aimed at preventing myeloma, improving treatments, and finding a cure.
Also, during the IMWG Summit, data from the CESAR and ASCENT clinical trials showed that with the evolving understanding of smoldering myeloma, this precursor stage to myeloma may require appropriate treatment.
WHAT WERE SOME KEY LEARNINGS FROM THE 2023 IMWG SUMMIT? The iStopMM® project is an acronym for Iceland Screens, Treats, or Prevents Multiple Myeloma. This IMF Black Swan Research Initiative-funded project aims to understand the early stages of myeloma. The project has screened over 80,000 adults in Iceland and discovered that 5% of individuals over age 50 have monoclonal gammopathy of undetermined significance (MGUS). The study has revealed that the risk of IgA myeloma does not increase with age, unlike other types of myeloma.
Minimal residual disease (MRD) refers to the small number of myeloma cells that may survive in your body after treatment. The amount of these cells is so small that you may not show any signs or symptoms of myeloma. Also, most of the time, the number of cells is too small to be detected through standard testing. MRD tests are so sensitive that they can detect one myeloma cell in one million healthy cells. At the IMWG Summit, it was reported that achieving and maintaining an MRD-negative status can significantly reduce the risk of relapse. While MRD status is not currently a sole basis for clinical decision-making,
Mass spectrometry, a very sensitive test for measuring the level of myeloma protein (monoclonal protein) in the blood, may be used to detect circulating tumor cells. This method can provide valuable insights on the presence of active disease.
doctors may consider escalating treatment for high-risk myeloma patients with persistent MRDpositive status.
and emerging immunotherapies. The discussions among leading researchers from around the world drive progress in improving patient outcomes.
An emerging therapy is the use of anti-CD38 monoclonal antibodies in initial myeloma treatment. Also at the Summit, the researchers reached a consensus that incorporating anti-CD38 antibodies into initial treatment should become the standard of care for newly diagnosed myeloma cases.
Visit https://imwg.myeloma.org to learn more.
CAR T-cell therapy and bispecific antibodies were discussed as immunotherapy options for myeloma patients. Although these treatments have demonstrated high response rates, they also come with side effects such as cytokine release syndrome and infections. Sequencing of treatment and careful monitoring for neurotoxicity are crucial in managing these therapies. The RedirecTT-1 trial combined the bispecific antibodies teclistamab and talquetamab showed promising response rates, including patients with extramedullary disease.
2023 IMWG PUBLICATIONS Dimopoulos MA, Merlini G, Bridoux F, et al. Management of multiple myeloma-related renal impairment: recommendations from the International Myeloma Working Group. Lancet Oncol. 2023;24(7):e293-e311.doi:10.1016/ S1470-2045(23)00223-1 Óskarsson, J.Þ., Rögnvaldsson, S., Thorsteinsdottir, S. et al. Determining hemodilution in diagnostic bone marrow aspirated samples in plasma cell disorders by next-generation flow cytometry: Proposal for a bone marrow quality index. Blood Cancer J. 2023;13, 177. https://doi.org/10.1038/s41408-023-00951-2
Overall, the IMWG Summit of 2023 provided valuable insights into myeloma research, treatment strategies, 13
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
INNOVATION
care partner. Carri said, “You hear all these feel-good stories about someone who has stroke . . . or becomes debilitated in some way, but the person they were with, marries them and loves them the rest of their lives . . . And I honestly thought, ‘Do I have that in me? Am I built for that?’” Soon, Carri decided, “We’re gonna do this.” She even reached out to the International Myeloma Foundation (IMF) and learned that her region needed a myeloma support group. Together, Oya and Carri started the Mason-Dixon Line Myeloma Misfits Support Group. Today, Oya and Carri co-lead this support group. The two talk openly with support group members about the less discussed sides of living with myeloma, such as concerns about sexual relationships between a patient and a romantic partner, and the uglier sides of gastrointestinal issues.
“As long as I’m alive, I’m here fighting for all myeloma patients but especially the ones who look like me.” Oya Gilbert
Myeloma patient and IMF Support Group Co-Leader Oya Gilbert and girlfriend Carri Helman embrace outside the venue of the 2023 IMF Support Group Leaders Summit.
CANCER: IT’S A FAMILY AFFAIR A CANCER DIAGNOSIS IS A FAMILY AFFAIR. THE COUPLE OYA GILBERT AND CARRI HELMAN ARE A TESTAMENT TO THIS. In 2015, Oya Gilbert began experiencing symptoms that were a mystery to him and his healthcare providers. By 2016, Oya had just started dating Carri. Carri recalls some of those early dates beginning and ending with Oya falling asleep. Oya, who did not disclose his health concerns to Carri, said, “We're trying to date, and she's trying to figure out what's wrong with this dude.” Soon, Oya talked to Carri about his health concerns. What followed was many visits to doctors who could not put a pin in his list of symptoms, including arm numbness, shortness of breath, extreme fatigue, and pain. Some doctors insinuated that Oya may be a hypochondriac or was seeking painkillers for recreational use. The latter of these two assumptions angered Carri who sensed an undertone of bias toward Oya as a potential drug user because he is an African American male living in a rural community. 14
After two years of a delayed diagnosis, Oya decided to purchase additional life insurance. He remembers thinking, “Am I going to live or die?” Feeling this way, he wanted to make sure his three children were cared for. His action of obtaining life insurance spurred the attention of additional healthcare providers who finally took his concerns seriously. In a routine urine screening, abnormal myeloma protein was discovered. Just one day after Christmas in 2017, Oya was diagnosed with multiple myeloma. Once diagnosed, Oya’s three children needed to be told. In 2017, Oya’s daughter was 24, his middle son was 12, and his youngest son was 3. Oya explained, “You need to understand each of your children. You need to understand how they receive information, and how they process it. All of them are different.” He had conversations with each child on their own terms.
Because Oya and Carri are open, they bring their perspectives to everything they do. In December 2023, the IMF sent Oya and Carri to the 65th American Society of Hematology (ASH) Annual Meeting and Exposition. During ASH, both Oya and Carri explored the Diversity, Equity, and Inclusion (DEI) sessions. Both Oya and Carri already knew that myeloma is the number one blood cancer in Black and Brown communities, and they were excited to see this fact and others shared at the meeting. Yet, both noticed that while DEI discussions took centerstage, only about 20 people attended these sessions. Oya and Carri know you cannot do this alone. They both urge people of all walks of life to take part in DEI activities, especially since delayed diagnosis such as Oya’s is not an anomaly. It is actually very common among Black and Brown patients. In Oya’s words, “As long as I’m alive, I’m here fighting for all myeloma patients but especially the ones who look like me.” Together, Oya and Carri have taken their personal journey and broadened it to impact their now extended family—the myeloma community at large.
https://imwg.myeloma.org
[Clockwise from Left:] Drs. María V. Mateos, Brian G.M. Durie, Shaji Kumar, S. Vincent Rajkumar, and Bruno Paiva engage at Black Swan Research Initiative investigators' meeting.
TOWARD THE FUTURE OF MYELOMA Some IMF Black Swan Research Initiative-funded projects underway include the following: • BSRI researchers are studying the immune system of patients with early disease, e.g., MGUS or smoldering multiple myeloma. By studying the immune system in the blood and bone marrow of these patients, researchers understand potential immune defects that may be leading to the development of these precursors. Their discoveries show that many different immune cells are affected by an immune defect. This immune defect allows myeloma to develop and progress. • BSRI researchers are optimizing minimal residual disease (MRD) testing to examine the small amounts of myeloma remaining in the bone marrow after decisive treatment. Developed in 2012, by the BSRI’s Spanish team led by Dr. Albert Orfao, the Next-Generation Flow test detects myeloma at a very low level using flow cytometry. The IMF BSRI team is proud to announce that in 2024, the NGF method is headed for commercialization. While exciting news, standardization and guidelines must be put in place.
Meanwhile, Carri found herself thrust into the role of 15
INNOVATION
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
This year, the iStopMM oral and poster presentations investigated: 1. Abstract #214: The Early Benefits and Psychological Effects of Screening for Monoclonal Gammopathy of Undetermined Significance: Results of the iStopMM Study 2. Abstract #216: Monoclonal Gammopathy of Undetermined Significance and the Risk of Thrombosis Events: Results from iStopMM, a Population-Based Screening Study in Iceland 3. Abstract #530: Predicting an Underlying Clonal Plasma Cell Population in Light-Chain Monoclonal Gammopathy of Undetermined Significance Using Free Light-Chain Ratio 4. Abstract #535: Revised Definition of Free Light Chains in Serum and Light Chain Monoclonal Gammopathy of Undetermined Significance: Results of the iStopMM Study) 5. Abstract #3397: Risk Factors of Smoldering Multiple Myeloma: Results from the Screened iStopMM Study) 6. Abstract #4766: Sars-CoV-2 Infection Does Not Lead to Progression of Monoclonal Gammopathy of Undetermined Significance: Results from the Population-Based iStopMM Screening Study [From Left:] iStopMM’s Principal Investigator Dr. Sigurdur Kristinsson and Stephen Harding, Director of the Binding Site, engage at an IMWG meeting.
ISTOPMM DEMONSTRATES THAT MYELOMA SCREENING IS THE WAY TO GO The IMF’s Black Swan Research Initiative®-funded project, iStopMM®, has been underway in Iceland since 2016 (officially launched in 2017). iStopMM stands for Iceland Screens, Treats, or Prevents Multiple Myeloma. Led by the University of Iceland’s Prof. Sigurdur Kristinsson, the goal of iStopMM has been to screen the population of Iceland for the presence of MGUS — the precursor state to smoldering multiple myeloma (SMM) — or for the presence of active myeloma. WHAT ARE THE ADVANTAGES OF EARLY SCREENINGS FOR MGUS OR SMOLDERING MULTIPLE MYELOMA? 1. Early detection allows for timely intervention. 2. Patients identified early have a lower risk of complications like anemia, bone disease, or kidney dysfunction, enabling earlier and less challenging treatment.
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3.
Early detection reduces the financial burden on patients and insurers associated with later-stage disease complications and related imaging or testing costs. 4. Timely diagnosis enables healthcare practitioners to adjust ongoing care promptly, addressing predisposed medical issues and improving overall quality of life for patients with MGUS or smoldering multiple myeloma. All these advantages amount to improved survival and better quality of life: in short, the iStopMM project proves that screening for myeloma is the way to go. Furthermore, the IMF’s BSRI proudly showcased four oral and two poster abstracts from the iStopMM Project during the 65th American Society of Hematology (ASH) Annual Meeting in San Diego, CA, which took place from December 9-12, 2023.
HOW CLOSE IS THE IMF TO CURING OR PREVENTING MYELOMA? SHORT ANSWER: We've made solid and active progress. LONGER ANSWER: Documenting a cure takes time. For instance, the IMF's Black Swan Research Initiative (BSRI)-funded researchers are observing promising outcomes with minimal residual disease (MRD)-negativity after effective initial combination therapies. However, determining if long-term MRD-negativity equals a cure requires decades of follow-up, with researchers already tracking patients for 10 to 20 years. WHAT RESEARCHERS KNOW ABOUT A POTENTIAL MYELOMA CURE Researchers acknowledge that patients treated with specific combination therapies can fare well for two decades, even with low-level myeloma and potential relapse. The focus shifts to whether myeloma
iStopMM Team Member Dr. Thorvardur Jon Love presents about quality of life as it relates to iStopMM study participants.
patients can achieve long-term survival with a good quality of life. The answer is YES, evidenced by the success of two IMF BSRI-funded projects—the U.S.-based ASCENT trial and the Spanish-based CESAR trial. In the ASCENT trial, high-risk smoldering multiple myeloma patients receiving Darzalex® (daratumumab), Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone (Dara + KRd) have achieved MRD-negative status for up to three years, showcasing gains in survival and quality of life. The CESAR trial, with a 6-7 year follow-up, reveals that half of patients receiving KRd plus autologous stem cell transplant are MRD-negative, with 90% surviving and doing well. GIVEN RESULTS OF IMF BSRI-FUNDED TRIALS, HOW CLOSE ARE WE TO A MYELOMA CURE? 1. We are achieving long-term survival. 2. Patients on these trials enjoy an excellent quality of life. 3. Patients are living with improved health for 3-7 years. 4. New cure trials can build on these benefits. CAN MYELOMA CURRENTLY BE PREVENTED? The IMF's BSRI-funded iStopMM project detects monoclonal protein at early MGUS and smoldering multiple myeloma stages. These findings provide insight into disease progression triggers, informing potential prevention strategies. 17
The International Myeloma Foundation’s 2023 INNOVATION AND IMPACT REPORT
OUR OVERALL IMPACT ON PATIENTS AND CARE PARTNERS The IMF remains centered on the people impacted by myeloma. We make every effort to ensure that patients, care partners, and their loved ones are educated about multiple myeloma. HERE’S HOW WE DID IN 2023:
INFOLINE HAD
5,700 INTERACTIONS
IMPACT
UPDATED 34
EXISTING PATIENT-FOCUSED
MATERIALS TO ADD
TO A LIBRARY OF 100+ PUBLICATIONS MYELOMA-RELATED
WITH THE MYELOMA COMMUNITY
EMPOWERED 150 SUPPORT GROUPS POWERED BY
THE IMWG
PUBLISHED 2
MAKING THE TOTAL
THE PASSION OF OVER
6000 PATIENTS AND CARE PARTNERS
NEW MEMBERSHIP
OVER 209 #MULTIPLEMYELOMA EXPERTS FROM
41 COUNTRIES
18
NEW PATIENT-FOCUSED
PUBLICATIONS
WELCOMED NEW MEMBERS,
CONDUCTED 18 EDUCATIONAL
PUBLISHED 20
PUBLICATIONS
TRANSLATED 35
IMF PUBLICATIONS INTO
21 LANGUAGES
WEBINARS,
WITH A COMBINED PARTICIPATION OF
30,000+
TOTAL IMF
MAKING THE TOTAL
INCLUDING MYELOMA CONSENSUS
HAD 2,357,520
ACROSS PLATFORMS:
66 SINCE 2003,
GUIDELINES AND MORE
SCHOLARS FOR HEALTH EQUITY
PROGRAM RESULTED IN 11 POSTER ABSTRACTS,
2 ASH POSTERS, AND 1 ASH AWARD
IN THE U.S. AND EUROPE
IN 2023, THE IMF WEBSITE
MORE IMWG PAPERS,
THE MEDICAL STUDENT
MYELOMA.ORG PAGE VIEWS, WHICH REPRESENTS
A 51% INCREASE IN USER TRAFFIC YEAR-OVER-YEAR
SOCIAL MEDIA
FOLLOWERS
176,000
IN 2023, YOU ORGANIZED A TOTAL OF 50 PEER-TO-PEER FUNDRAISERS
19
International Myeloma Foundation Headquarters 4400 Coldwater Canyon Ave., Suite 300 Studio City, CA 91604, USA 800.452.CURE (2873) USA & Canada TheIMF@myeloma.org
http://myeloma.org myeloma.org