Myeloma Today - Summer 2023

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publication of the International Myeloma Foundation

14th Annual Summit of the IMF’s IMWG

Top experts in myeloma focus on MGUS, SMM, MRD, frontline therapy, relapse, as well as new and emerging immunotherapies

Key Myeloma Abstracts from 2023 ASCO & EHA

Exciting data presented on immunotherapies and the management of patients with relapsed myeloma, and much more! PAGE 8

ALSO IN THIS EDITION:

CAR T-cell therapy in the setting of earlier relapse

Clinical trial data presented at ASCO and EHA demonstrate the promise of CAR T­ cell therapies earlier in the course of myeloma PAGE 9

IMF Honors Two Outstanding Researchers

Dr. Mateos is recipient of the Robert A. Kyle Lifetime Achievement Award and Dr. Martin receives the Brian G.M. Durie Outstanding Achievement Award PAGE 10

RESEARCH PRESENTED AT ASCO AND EHA IN 2023

TOP

Dr. Brian G.M. Durie discusses the research presented at 2023 ASCO and EHA with panelists Mira Armour (leader of Mijelom CRO, Croatia) and Jack Aiello (28 ­year survivor and leader of the San Francisco support group). Watch this video IMF Chief Medical Officer DR. JOSEPH MIKHAEL Answers your myeloma questions LIVE on Facebook.

Dr. Joseph Mikhael goes LIVE to answer your myeloma questions in the return of his popular “Ask Me Anything” session. Join him on Facebook LIVE or watch the video replay. Watch now

publications.myeloma.org

• Booklets that explain myeloma therapies and more

• Tip cards on topics important to myeloma patients

• Guide to Myeloma Acronyms and Abbreviations

• Guide to Myeloma Terms and Definitions

• Myeloma Today Spring 2023 edition

BRIAN G.M. DURIE, MD JACK AIELLO MIRA ARMOUR

A Message from the IMF Chairman & Director of Global Patient Initiatives

Dear Reader,

The IMF’s Global Myeloma Action Network (GMAN) is a group of myeloma advocates and patient organizations from around the world whose aim is to support the needs of patients with myeloma. GMAN’s global mission is to improve the lives of myeloma patients, raise myeloma awareness, enhance the capabilities of myeloma patient advocacy groups, build the capacity of local myeloma organizations, and increase worldwide access to medicine and treatment. To advance this mission, the annual GMAN Summit brings together participants from far and wide, and you can read more about this year’s event beginning on page 14 of this edition of Myeloma Today

A special feature of the GMAN Summit is the reporting by representatives of patient organizations about the outcomes of projects that were funded by GMAN’s Susie Novis Durie (SND) Grants, as well as the announcement of the next year’s recipients. These Grants were created to help member organizations fulfill their missions and increase education, awareness, and access to treatment. Past projects supported by the SND Grants have included in-person and online educational meetings and seminars, translation and distribution of patient education materials, development of smartphone apps, media campaigns to promote earlier diagnosis of myeloma, the deployment of a myeloma educator to remote regions with limited access to communication, the training of nurses in areas where medical doctors are scarce, and many more creative and effective initiatives.

The recipients of the 2023 Susie Novis Durie Grants include the following projects, listed in alphabetical order by country:

 Fundación Argentina de Mieloma Argentina

The “Living Well with Myeloma” is a monthly radio program in Spanish. A total of 8 live episodes will also be recorded and archived for easy access online. Each episode will feature a myeloma healthcare professional addressing a specific educational topic of interest to patients.

 Associação Portuguesa Contra a Leucemia Portugal

A video and podcast series will be recorded in Portuguese, consisting of 20 interviews with healthcare professionals and

blood cancer patients, including patients with myeloma. The goal of this series is to reach younger patients with myeloma and to make challenging medical concepts easier to understand.

 Korea Blood Disease and Cancer Association South Korea

“Dahaeng” means “it’s fortunate that we’re together” in Korean, and a “Dahaeng Box” is a comfort kit assembled with a variety of products intended to help the recipient feel better. Such self-care kits will be tailored to alleviate the effects of peripheral neuropathy in patients with myeloma, then distributed.

 Kanser Savaşçıları Derneği Republic of Turkey

More than 15 million people were affected by the recent tragic earthquakes in the Republic of Turkey. Some myeloma centers were destroyed, and many patients had to move to the city of Ankara in order to continue their treatments. This project will offer logistic support to myeloma patients in Ankara.

Next year, we will learn the outcomes of these projects and will share them with you. We are so proud of all that GMAN members have accomplished, and we are honored to support their good work with funding from the Susie Novis Durie Grants program. Warm regards,

Susie Durie IMF Founder Director, Global Patient Initiatives

Dr. Brian G.M. Durie IMF Chairman Chief Scientific Officer

Yelak Biru and Serdar Erdoğan of the IMF with representatives of myeloma patient organizations that have been awarded the 2023 Susie Novis Durie Grants: Mariana Auad & Isabel Muñoz (Argentina), Lara Cunha (Portugal), Asli Ortakmaç (Republic of Turkey), and Park Jung-Suk & Bo-Ra Yun (South Korea)

Susie Durie and Dr. Brian G.M. Durie, co-founders of the IMF, receive a joint 2019 Honorary Doctorate for Scientific Excellence from the Vrije Universiteit Brussel

Letter from the IMF President & Chief Executive Officer

Dear Friends,

I wanted to take a moment to share how the IMF’s support programs have been instrumental in my journey as a myeloma patient. In 1995, when I was first diagnosed with myeloma, I felt lost and overwhelmed. The words “You have cancer” are devastating. I was thrust into an unfamiliar world of medical terminology and treatments. I didn’t know where to turn for support and information. And then I found the IMF.

The IMF’s educational resources increased my health literacy and got me started on a path to becoming a patient who is capable of playing an active role in my own medical care, and of participating in shared decision-making about my care with my doctors. The IMF’s network of support groups gave me a sense of community and fostered a feeling of empowerment even in those early day of my treatment journey. I met remarkable individuals – patients with myeloma who inspired me to follow their example of “paying it forward” by becoming an advocate for the myeloma community.

Support groups have been an essential part of my journey. They provide a safe space for patients to share experiences and emotions with others who truly understand what it’s like to live with myeloma. I’ve made lifelong connections with others in my support group, and the support and encouragement we provide each other are invaluable. The IMF and the support group network also provide invaluable resources to our care partners – caregivers who walk alongside us and help us cope, even while trying to cope themselves with our health-related changes.

The IMF’s support of patients, care partners, and myeloma advocates extends far beyond the borders of the United States. A decade ago, the IMF founded what evolved into the Global Myeloma Action Network (GMAN) and has since steadily supported the capacity-building of myeloma advocacy organizations across the world. While there is still much

to do, the positive impact made by GMAN’s member organizations has grown exponentially over the years. In June 2023, the 10th annual GMAN Summit convened in Germany, and you can read more about it beginning on page 14 of this edition of Myeloma Today.

In 2006, the IMF founded the Nurse Leadership Board (NLB) to improve the nursing care and self-care of patients with myeloma. The NLB represents oncology nurses who are experts in myeloma at leading medical centers. On page 12 of this edition of Myeloma Today, you can read about the 17th annual symposium held by the NLB at the 48th Annual Congress of the Oncology Nursing Society (ONS). The work of the NLB contributes to improved patient care. Everything that the IMF does is with the patient in mind.

Another one of the most impactful IMF initiatives is the International Myeloma Working Group (IMWG), which emerged from the IMF’s Scientific Advisory Board of myeloma experts established in 1995, coincidentally the year of my diagnosis. The IMWG is the most prestigious organization for myeloma researchers, with nearly 300 members who help generate a wealth of knowledge about myeloma. The IMWG conducts collaborative research to improve outcomes for myeloma patients while providing scientifically validated consensus guidelines for the treatment and management of myeloma and its sequelae. The first of many IMWG consensus guidelines was published in 2003. You can read about the 14th annual IMWG Summit beginning on page 5 of this edition of Myeloma Today.

It has been incredibly inspiring to witness the progress being made in the field of myeloma and to be a part of the conversation. I believe that the IMF’s support of the patient community and of the scientific and clinical professionals who are improving patient care is crucial to patients with myeloma living longer and better lives. As a patient, I am truly grateful for the work that the IMF does and proud to be a part of the IMF team.

Yelak Biru Myeloma Patient IMF President & CEO

Yelak Biru with Robin Tuohy (IMF Vice President, Support Groups) and Michael Tuohy (23-year myeloma survivor and patient advocate)

Yelak Biru

14th Annual Summit of the IMF’s IMWG

Top experts in myeloma focus on MGUS, SMM, MRD, frontline therapy, relapse, and immunotherapies

By Brian G.M. Durie, MD IMF Chairman of the Board & Chief Scientific Officer IMWG Summit Chair

On June 6, more than 130 of the world’s leading myeloma researchers gathered for an intensive three-day program of meetings at the 2023 Summit of the International Myeloma Working Group (IMWG). The IMWG is a collaborative initiative focused on improving outcomes for patients with myeloma. It is the most prestigious organization for myeloma researchers from around the world, and the IMWG Summit is an important annual activity for top myeloma experts who work together to fulfill the patient-centric mission of the organization.

Members of the IMWG collaborate to identify, support, and implement the most promising research to prevent the onset of myeloma, to improve treatment, and to find a cure. Hosting the important work of the IMWG and its members is a critical element of the IMF’s commitment to expand myeloma research and to educate myeloma patients on a global level.

Each year for 14 years, the IMWG Summit has been both a unique and an extraordinary experience. It is different from other medical meetings in general, and from other myeloma meetings in particular. Our collective primary goal is to move the field of myeloma forward for the utmost benefit of patients. During the 2023 IMWG Summit, we focused on the following topics that formed the majority of the meeting, and included a combination of presentations and brainstorming discussions:

MGUS and SMM

Dr. S. Vincent Rajkumar (Mayo Clinic, Rochester, MN) co-chaired the 2023 IMWG Summit with me, and also chaired the session on monoclonal gammopathy of undetermined significance (MGUS)

and smoldering multiple myeloma (SMM). These asymptomatic disorders are characterized by monoclonal plasma cell proliferation in the bone marrow and absence of end-organ damage.

Prevalence of MGUS and SMM

Dr. Sigrun Thorsteinsdóttir (University of Iceland) summarized her findings from the iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) population-screening study, which is part of the IMF’s Black Swan Research Initiative® (BSRI®). The iStopMM project screened more than 80,000 adults over the age of 40 in Iceland in order to better understand the rates of MGUS, SMM, and active myeloma and to better understand the early stages of myeloma.

Notably, 5% of people over age 50 have MGUS, a condition with a small risk (1% per year) of progressing to SMM or active myeloma. A surprising finding was that the risk of IgA myeloma does not increase with age, unlike the other types of myeloma (IgG, IgD, IgE, or IgM). Understanding this may lead to insights that can prevent patients from progressing to active myeloma.

Because this research is at an early stage, screening all people for MGUS is not recommended. New testing methods like mass spectrometry are very sensitive and can detect even extremely low levels of myeloma protein (M-protein), and it is not clear whether it is appropriate to identify patients with extremely low levels of M-protein as having MGUS.

Risk stratification and management of SMM

Dr. María-Victoria Mateos (University of Salamanca, Spain) discussed two ways of identifying patients with high-risk SMM (HR SMM): the Mayo Clinic risk model and the Spanish risk model. Although these risk models use different approaches, (continues on next page)

More than 130 of the world’s leading myeloma researchers participated in the 2023 IMWG Summit

2023 IMWG SUMMIT – CONTINUED FROM PAGE 5

they both are effective at identifying patients at high risk of progression. Dr. Mateos said that the management of SMM should be risk-adapted. In patients with a 50% risk of progression to myeloma at 2 years, current clinical trial results support the use of Revlimid® (lenalidomide) + the steroid dexamethasone (Rd) induction therapy followed by maintenance with Revlimid to delay or prevent progression.

Dr. Mateos also reviewed data from the ongoing CESAR and ASCENT clinical trials, which took different approaches to SMM, with both studies demonstrating excellent results. In the ensuing discussion, Summit participants examined how the assessment of SMM is continuing to evolve, suggesting that HR SMM is more appropriately grouped with active myeloma because that is how it is treated. However, the doctors deemed it important that the designation of SMM remain since it defines a group of patients who benefit from lower-intensity treatment.

Minimal residual disease

Dr. Rajkumar and I co-chaired the session on minimal residual disease (MRD), which included the following presentations:

Peripheral blood-based MRD approaches

Dr. Noemi Puig (University of Salamanca, Spain) presented a talk about how myeloma cells are detected in the blood. These are called circulating tumor cells (CTCs). Based on current methods, she found that not all patients who have myeloma cells detectable in their bone marrow have CTCs detectable in the blood. Research is underway to find more sensitive ways of detecting CTCs, perhaps using mass spectrometry.

Blood samples are more accessible than bone marrow samples and can be monitored over time in a way that is impossible to do with bone marrow samples. Most doctors do not think that blood tests for CTCs will replace bone marrow for diagnosing and staging myeloma, but blood tests for CTCs could become useful, sensitive monitoring tools over time.

Bone marrow-based MRD

approaches

Dr. Nikhil C. Munshi (Dana-Farber Cancer Institute, Boston, MA) reviewed current approaches to measuring MRD in patients with myeloma. He said that sustained MRD-negative status is relevant, predictive, and meaningful. Patients who achieve and maintain an MRD-negative status via sensitive testing methods do not tend to experience relapse.

Does it matter when MRD-negativity is achieved during treatment? Doctors do not have evidence that it does. Over time, maintenance therapy can induce MRD-negativity in patients who were previously MRD-positive, so continuing on treatment is worthwhile.

Can decisions to start or stop treatment be made based on MRD test results? In most cases, doctors think MRD status should not direct clinical decision-making. However, most doctors agreed that patients with high-risk myeloma and continued MRD-positive status would feel comfortable escalating

treatment to try to achieve MRD-negativity. High-risk disease is defined as myeloma with one or more high-risk chromosomal mutations.

Frontline therapy

Dr. Jesús San Miguel (University of Navarra, Spain) chaired the session on frontline therapy, the first therapy a patient receives after they are diagnosed with myeloma.

Newly diagnosed myeloma and treatment strategies

Dr. Nisha Joseph (Winship Cancer Institute, Emory University, Atlanta, GA) reviewed the clinical data for using anti-CD38 monoclonal antibodies in induction therapy, including the GRIFFIN clinical trial, which examined the addition of Darzalex® (daratumumab) to the 3-drug (“triplet”) induction regimen of Velcade® (bortezomib) + Revlimid + dexamethasone (VRd) and the GMMG-HD7 clinical trial that explored the “quadruplet” of Sarclisa® (isatuximab) + VRd (Isa-VRd). In addition, Dr. Joseph shared institutional data from Emory.

All the studies demonstrated an increasing depth of response with higher rates of MRD-negativity with the addition of anti-CD38 antibodies to the induction regimen. Doctors agreed that based on the increased depth of response, using an anti-CD38 antibody as part of the induction regimen should be the standard of care (SOC) for most newly diagnosed myeloma. Note that approximately 85% of myeloma patients have standard-risk disease and 15% of patients have high-risk disease. The doctors agreed that a combination of an anti-CD38 antibody + VRd was superior for standard-risk patients. For high-risk patients, results were inconclusive when compared to therapy with VRd.

Dr. Joseph also reviewed the evidence for the use of proteasome inhibitors in frontline regimens, including Velcade and Kyprolis® (carfilzomib). She concluded that there is a role for proteasome inhibitors in the frontline setting for patients with high-risk myeloma.

Transplant strategy

Dr. Peter Voorhees (Atrium Health Levine Cancer Institute, Charlotte, NC) reviewed the past and discussed the present and future of stem cell transplantation in myeloma. He stated that the path to a myeloma cure runs through MRD. Patients who achieve and maintain MRD-negative status tend to remain in remission longer. Data from many clinical trials show that the

Drs. Nikhil C. Munshi, S. Vincent Rajkumar, and Brian G.M. Durie

best path to sustained MRD-negativity is an upfront triplet or quadruplet induction/consolidation followed by an autologous stem cell transplant (ASCT).

Dr. Voorhees spoke of ongoing clinical trials that will inform future myeloma treatment. The MIDAS study is exploring the concept of risk-adapted consolidation and maintenance using MRD testing. CARTITUDE-6 is studying ASCT vs. CAR T-cell therapy with Carvykti® (cilta-cel). Several phase II studies are examining bispecific antibodies (also called T-cell engagers) in newly diagnosed patients. Doctors expressed optimism that improved treatments will bring us closer to a cure.

Management of early relapse

Dr. Philippe Moreau (University Hospital of Nantes, France) chaired the session on early relapse management.

Approach to early relapse

Dr. Meletios A. Dimopoulos (University of Athens School of Medicine, Greece) discussed early relapse, defined as relapses occurring during the first 3 lines of therapy. Dr. Dimopoulos made the point that disease, treatment, and patient-related factors all play a role when selecting therapy at first relapse. Treatment goals include maximizing response, maintaining disease control, and balancing efficacy with tolerability and quality of life. Considerations about drugs that a patient may be resistant or refractory to, and the length of their prior remission are essential in selecting the subsequent therapy.

Many patients are resistant or refractory to Revlimid at relapse because many have received Revlimid maintenance for an extended period of time. Although anti-CD38 antibodies have been a staple of second-line treatment, as these become more common in frontline use, other therapies like CAR T-cell therapy and bispecific antibodies may be moved up earlier in treatment.

The 10%–15% of myeloma patients who relapse quickly after their first treatment are challenging to treat because this tends to indicate aggressive disease. Doctors agreed that clinical trials may be a good option for many of these patients.

Immunotherapy

Dr. Munshi served as session chair. CAR T-cell therapy and bispecific therapy: patient selection, side effect management

Dr. Ajai Chari (Icahn School of Medicine at Mount Sinai, New York, NY) reviewed CAR T-cell therapy and bispecific antibodies, which have demonstrated unprecedented response rates in myeloma of approximately 70%–100%. However, these new approaches to treatment also have some notable side effects that are new to the myeloma space. Cytokine release syndrome (CRS), an acute systemic inflammatory syndrome characterized by fever and flu-like symptoms, occurs in most patients but is mild in most cases. It can be treated with steroids and/ or tocilizumab. Infection is also common in patients treated with CAR T cells or bispecific antibodies.

The IMWG recently published recommendations to help address prevention of infection, which can be dangerous in patients with myeloma. Neurotoxicity, a rare but serious side effect, can also occur. Doctors must monitor patients closely to watch for signs of neurotoxicity so they can intervene early. Given the multiple new immunotherapies available to patients, and the changing standards of care in the frontline setting, attention must be paid to the sequencing of treatment.

New and emerging immunotherapies

Dr. Thomas Martin (UCSF Helen Diller Family Comprehensive Cancer Center, San Francisco, CA) discussed the unprecedented response to CAR T-cell therapies and bispecific antibodies that target B-cell maturation antigen (BCMA),

The Immunotherapy panel discussion with Drs. Thomas Martin, Ajai Chari, Paula Rodriguez-Otero, Nikhil Munshi, Rakesh Popat, and Brian G.M. Durie

Early relapse management panel discussion with Drs. Saad Z. Usmani, Meletios A. Dimopoulos, Philippe Moreau, and Sagar Lonial

2023 IMWG SUMMIT – CONTINUED FROM PAGE 7

a protein found on the surface of myeloma cells, and noted that many more new targets are forthcoming. There are opportunities to use therapies in new ways, new combinations, and at new times (e.g., in earlier lines of therapy or as maintenance). Preliminary data suggest that CAR T-cell therapies and bispecific antibodies may have even better outcomes in earlier lines of treatment because immunotherapies harness the patient’s own immune system to kill myeloma cells, and patients tend to have more robust immune systems in earlier lines of therapy.

The RedirecTT-1 clinical trial combined the bispecific antibody Tecvayli™ (teclistamab) with talquetamab, another bispecific antibody that has a different target. This study demonstrated an impressive 96.3% response rate in one of the dosing cohorts. It also was effective in patients with extramedullary disease.

IMWG committees

Despite all the advances, questions remain, and real-world datasets are needed to best match the individual patient and the optimal therapy, and to sequence the therapies. As the Summit

drew to a close, members of the following IMWG committees presented their reports: the SMM Committee, the Bone Disease Committee, the Immune Therapy Committee, and the Mass Spectrometry & MRD Committee.

By any measure of success, the 14th Annual IMWG Summit was lively and productive. No doubt, such exemplary collaboration in research will bring forth new and exciting developments that improve the lives of patients with myeloma. MT

Visit videos.myeloma.org to view IMWG Conference Series: Making Sense of Treatment as well as the helpful Ask Dr. Durie videos. Visit blogs.myeloma.org to read the Week in Review series by Dr. Brian G.M. Durie.

2023 ASCO and EHA: Bispecifics, CAR T, and More!

In June 2023, a large number of myeloma research abstracts were presented by pre-eminent experts at the annual congresses of the American Society of Clinical Oncology (ASCO) and the European Hematology Association (EHA). Great interest was focused on the use of CAR T-cell therapy earlier in the disease setting. Data from the CARTITUDE-4 clinical trial were presented during both ASCO and EHA. This study compares Carvykti® (ciltacabtagene autoleucel or cilta-cel) vs. standard of care (SOC) therapies in early relapse.

Results with Carvykti showed a 74% reduction in the risk of progression. The rate of complete response (CR) and stringent complete response (sCR) was 73.1% with Carvykti vs. 21.8% with SOC. At current follow-up, the SOC median progression-free survival (PFS) is 11.8 months and has not yet been reached for Carvykti. This is similar to the results of the KarMMa-3 clinical trial comparing Abecma® (idecabtagene vicleucel or idecel) vs. SOC, demonstrating substantial PFS benefit for the Abecma approach.

Emerging data with bispecific antibodies were presented at both ASCO and EHA. Exciting first results were presented from the RedirecTT-1 clinical trial evaluating the impact of Tecvayli® (teclistamab) and talquetamab bispecific antibodies being given simultaneously to target both BCMA and GPRC5D. In the dose-finding phase Ib, 33% of study participants had high-risk cytogenetics and 32% had extramedullary disease (EMD).

At the expansion maximum-tolerated dose (MTD) level, the impressive overall response rate (ORR) was 96.3%, with 40.7% of patients achieving CR or sCR. An unexpected finding was the

high response rate of 85.7% in patients with EMD, with 28.6% achieving CR or sCR, and the disappearance of multiple soft tissue lesions throughout the body. The “double-targeting” approach is one of the new ways forward that can be applied to both bispecifics and CAR T-cell treatment approaches.

“The IMWG Conference Series: Making Sense of Treatment” video captures the lively discussion of myeloma research from 2023 ASCO and EHA, as well as the highlights from the 2023 IMWG Summit. Moderated by Dr. Brian G.M. Durie, with Drs. María-Victoria Mateos and Thomas Martin serving as panelists, you don’t want to miss a replay of this informative event recorded on June 15, 2023. Watch it and be on the forefront of the latest in myeloma! MT

IMWG Conference Series

#WHEREISDRJOE

Is It Time to Bring the CAR Home Early?

By Dr. Joseph Mikhael IMF Chief Medical Officer

Chimeric antigen receptor (CAR) T-cell therapy is already having a profound impact in many blood cancers, including in myeloma. Two CAR T-cell therapies are approved by the U.S. Food and Drug Administration (FDA) for use in myeloma.

In March 2021, Abecma® (generic name “idecabtagene vicleucel” or “ide-cel” for short) became the first CAR T-cell therapy approved by the FDA for patients with myeloma, and it is the first CAR T-cell therapy that targets the B-cell maturation antigen (BCMA), a protein involved in myeloma cell growth and survival. Abecma is approved for the treatment of adult patients with relapsed or refractory myeloma after 4 or more prior lines of therapy including an immunomodulatory agent, a proteasome inhibitor, and an anti-CD38 monoclonal antibody.

In February 2022, the FDA approved Carvykti® (“ciltacabtagene autoleucel” or “cilta-cel” for short) for the treatment of patients with relapsed or refractory myeloma after 4 or more prior lines of therapy, including a proteasome inhibitor, an immunomodulatory agent, and an anti-CD38 monoclonal antibody.

The CAR T-cell approach to treating myeloma is an immunotherapy that enhances the immune system, our body’s natural defense designed to destroy infected and malignant (cancerous) cells, and to remove cellular debris. CAR T-cell therapy takes the patient’s own T cells and engineers them to attack and destroy the myeloma cells. To achieve this goal, the T cells are “harvested” from the bloodstream of the patients, then sent to a highly specialized manufacturing laboratory to be engineered and multiplies until enough active T cells have been manufactured for the therapy to be effective. Then the T-cell product is administered to the patient by way of an infusion. The infused T cells immediately begin attacking the myeloma cells.

We are seeing response rates more than 3 times higher than prior therapies in heavily pretreated myeloma, even up to nearly 100%! But not only are the response rates high, we are seeing those responses last for a very long time. Some patients have had durable responses lasting for years. However, both Abecma and Carvykti are FDA-approved to be used in patients with at least 4 prior lines of therapy. That may change soon. Two large clinical trials, one with Abecma and one with Carvykti, are using CAR T-cell therapy in earlier-line treatment settings, including in newly diagnosed myeloma.

The KarMMa-3 clinical trial is evaluating Abecma in patients with 2 to 4 prior lines of therapy by comparing it to one of 5 standardof-care (SOC) regimens currently used in relapsed myeloma:

1. Darzalex® (daratumumab) + Pomalyst® (pomalidomide) + dexamethasone (DPd),

2. Darzalex + Velcade® (bortezomib) + dexamethasone (DVd),

3. Ninlaro® (ixazomib) + Revlimid® (lenalidomide) + dexamethasone (IRd),

4. Kyprolis® (carfilzomib) + dexamethasone (Kd), or

5. Empliciti® (elotuzumab) + Pomalyst + dexamethasone (EPd). With follow up of just over 18 months, the median progressionfree survival (PFS) was 13.3 months in the Abecma study arm vs. 4.4 months in the SOC study arm, and the response rate was 71% vs. 42%, respectively. This is truly a remarkable difference in favor of CAR T-cell therapy.

Data from the CARTITUDE-4 clinical trial of Carvykti was recently presented at the annual meetings of the American Society of Clinical Oncology (ASCO) and the European Hematology Association (EHA). Carvykti was evaluated in patients with 1 to 3 prior lines of therapy vs. SOC regiments DPd and DVd. With approximately 16 months of follow-up, the PFS for the SOC regimens study arm was 11.8 months vs. the Carvykti study arm where PFS has not yet been reached. The difference in the PFS curves is quite striking. There was also a significant difference in response rates, with 85% in the Carvykti study arm vs. 63% in the SOC regimens study arm.

In both studies it appears that giving CAR T-cell therapy earlier in the myeloma disease course resulted in less toxicity: less cytokine release syndrome (CRS), neurological toxicity, and low blood counts. This is not entirely surprising as novel treatments tend to be more effective in earlier lines of therapy, but the degree of improvement is noteworthy. It may also be that the patients’ T cells are more effective and safer when used earlier.

So what does this mean for patients with myeloma? It is gratifying to see these impressive results, and we anticipate that in the near future the FDA approvals for both CAR T-cell therapy products will change to allow their use earlier in the disease course. Having said that, many myeloma patients are experiencing difficulties with access to CAR T-cell therapy. This is a complex problem that includes production issues, slots at treatment centers, race and ethnicity, socio-economic status, and geography – some myeloma patients simply do not live anywhere near where CAR T-cell therapy is being done.

There is hope in sight as production increases and more treatment centers are beginning to offer CAR T-cell therapy. The results of the KarMMa-3 and CARTITUDE-4 clinical trials are truly very exciting. We are now evaluating CAR T-cell therapy in the frontline setting, and even comparing it to autologous stem cell transplant. We may soon see the CAR being brought home even earlier! 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 Thursday, and 9 a.m. to 2 p.m. on 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

Studies of CAR T-cell therapy demonstrate promise earlier in the course of myeloma

IMF Honors Two Outstanding Researchers

Dr. María-Victoria Mateos and Dr. Thomas Martin

Each year, the IMF honors two outstanding researchers who have made significant contributions in the field of myeloma. On June 8, the IMF honored the recipients of this year’s Kyle and Durie awards at an in-person event held during the 14th Annual Summit of the International Myeloma Working Group (IMWG) in Frankfurt, Germany. Dr. Brian G.M. Durie, who is the IMF Chairman of the Board, IMF Chief Scientific Officer, IMWG Chairman, leader of the IMF’s Black Swan Research Initiative® (BSRI®), Professor of Medicine, and recipient of the 2019 Honorary Doctorate for Scientific Excellence from the Vrije Universiteit Brussel, emphasized that “it is indeed a great honor to be able to present these prestigious awards in person at this year’s summit – in the presence of colleagues, friends, and family.”

Robert A. Kyle

Lifetime Achievement Award

The Robert A. Kyle Lifetime Achievement Award recognizes individuals whose work has resulted in significant advances in research, treatment, and care of patients with myeloma. Dr. Kyle (Mayo Clinic, Rochester, MN) is a world-renowned myeloma expert whose groundbreaking work led to the discovery of significant hematologic entities, such as monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM).

The recipient of the 2023 Robert A. Kyle Lifetime Achievement Award is María-Victoria Mateos, MD, PhD. Dr. Mateos is a Professor of Medicine who leads the Myeloma & Clinical Trials Unit at the University of Salamanca, Spain. Dr. Mateos also serves as coordinator of Grupo Español de Mieloma (GEM), the Spanish Myeloma Group. She is directly involved in the design, development, and coordination of many studies that have profoundly influenced current options for the management of myeloma. She has published more than 400 papers in international medical journals.

Dr. Mateos is a member of the IMWG, the International Myeloma Society (IMS), the European Hematology Association (EHA), and the American Society of Hematology (ASH). She served on the ASH Scientific Committee on plasma cell diseases (2015–2019) and the EHA Scientific Program Committee & Advisory Board (2013–2020), becoming chair of the Scientific Program Committee in 2019. She became a Councilor on the EHA Board in 2015 for a 4-year mandate and is now a member of the IMS Executive Board, the European School of Haematology (ESH) Scientific Committee, and the American Society of Clinical Oncology (ASCO) Scientific

Program Committee. Elected in 2022 for a 4-year mandate, she is the current President of the National Society of Hematology.

Dr. Mateos received the 2019 Brian G.M. Durie Outstanding Achievement Award and the 2022 IMS Bart Barlogie Clinical Investigator Award.

“It is a great honor for me to be the recipient of the Robert A. Kyle Lifetime Achievement Award, with the name of the FATHER of myeloma. Prof. Kyle has dedicated his life to myeloma research. He has educated many doctors in myeloma, but he’s always been focused on patient-centered care. These are the three pillars that inspire me in my career every day and I am committed to continuing this legacy for younger generations of doctors,” said Dr. Mateos.

Dr. Kyle commended Dr. Mateos: “I am very pleased that you were selected as the 2023 Robert A. Kyle Lifetime Achievement Awardee. You have made many important contributions to myeloma and the dysproteinemias over the years. I am certain that you will continue with your contributions to the field in the future. Keep up the good work!”

Brian G.M. Durie Outstanding Achievement Award

The Brian G.M. Durie Outstanding Achievement Award recognizes excellent achievements in myeloma research. The 2023 recipient is Thomas G. Martin, MD. Dr. Martin serves as Professor of Clinical Medicine, Associate Chief of Adult Hematology, Blood and Marrow Transplant & Cellular Therapy (HBC), Director of the Transplant & Cell Therapy Clinical Program, as well as Co-Director of the Myeloma Program and Clinical Research Director of Hematologic Malignancies at the Helen Diller Family Comprehensive Cancer Center of the University of California – San Francisco (UCSF).

Dr. Martin is a member of the American Society for Blood & Marrow Transplantation (ASBMT), ASCO, and ASH. He is involved in many pre-clinical and clinical investigations and has authored numerous articles in peer-reviewed literature. Dr. Martin leads the Immunotherapy Committee of the IMWG.

Dr. Thomas G. Martin addresses his colleagues upon accepting the Brian G.M. Durie Outstanding Achievement Award

Dr. María-Victoria Mateos with past recipients of the Robert A. Kyle Lifetime Achievement Award

Dr. Brian G.M. Durie, IMF Chairman & Chief Scientific Officer

Myeloma University is Here to Help YOU Online educational program serves nurses and patients!

By Diane Moran IMF Senior Vice President,

Business Relationship Management

The IMF’s Nurse Leadership Board (NLB) has created a FREE educational resource to help nurses and other healthcare professionals to gain knowledge about myeloma and to keep up with the rapid changes in myeloma care. “Myeloma care continues to evolve quickly with new drugs and new regimens, and there is so much that nurses need to know,” said Beth Faiman, a founding member of the NLB. “We created Myeloma University to help enhance the ability of nurses to care for their myeloma patients.”

“The IMF continues to provide the most up-to-date and accurate myeloma-related medical information in a user-friendly format so nurses can help patients be partners in their care,” said Yelak Biru, IMF President & CEO and a 27-year myeloma survivor.

Beth added: “The Myeloma University series helps improve nursing care in myeloma by sharing the NLB’s depth of knowledge in an easily accessible format of 5-to-8-minute videos on key myeloma topics, accompanied by downloadable slides and educational resources for nurses, as well as tools for myeloma patients and their care partners.” Myeloma University modules were developed by the NLB’s faculty of oncology nurse experts, who provide care to patients at leading centers that treat myeloma.

Beth explained that although the modules are created with the intent of providing up-to-date information for nurses, patients and caregivers may find them useful due to the patient tools that are included. “It is important for patients to be empowered

and informed so they can be active partners in their healthcare decisions.”

“Each module stands on its own, providing information that nurses need to know if they are caring for patients with myeloma,” added NLB member Donna Catamero, who is featured in several modules, including one on CAR T-cell therapy.

Myeloma University modules can be accessed at university.myeloma.org and currently include:

 Renal impairment in multiple myeloma

 Treatments for multiple myeloma – part 1

 Treatments for multiple myeloma – part 2

 How treatments are selected for patients with myeloma

 Treatment of multiple myeloma with monoclonal antibodies

 CAR T-cell therapy in multiple myeloma

 Maintenance and continuous therapy in multiple myeloma

Additional modules are already in production! MT

“I am sincerely humbled and flattered to be the recipient of the prestigious Brian G.M. Durie Outstanding Achievement Award. Dr. Durie has been an inspiration and a mentor, personally to me and to all of us in this field. His dedication to myeloma research and to the patients is unsurpassed, and it’s such an honor to receive this award in his name,” said Dr. Martin.

Dr. Durie applauded Dr. Martin’s exceptional achievements: “As a myeloma researcher in the midst of a stellar career, it is wonderful to be able to celebrate Dr. Martin’s many accomplishments. He is a researcher, a teacher, and a doctor loved by his many patients for his knowledgeable and compassionate care. He is a true model for all young researchers in the field.”

Yelak Biru, IMF President & CEO and a 27-year myeloma survivor, extended his warmest congratulations and appreciation to this year’s award recipients: “The IMF is honored to have Dr. Mateos as this year’s Robert A. Kyle Lifetime Achievement Awardee, and Dr. Martin as this year’s Brian G.M. Durie

Outstanding Achievement Awardee. Dr. Mateos’ pioneering work and groundbreaking discoveries have paved the way for new insights and innovative approaches in myeloma treatment. Her commitment to excellence, resilience, and tireless pursuit of knowledge have made a lasting impact on the myeloma community and beyond. As the first female recipient of this prestigious award, Dr. Mateos has become a role model for aspiring female scientists – proving that gender should never limit one’s potential for success in the pursuit of scientific excellence. We applaud Dr. Mateos’ exceptional achievements and celebrate this historic milestone with great pride.”

“The Brian G.M. Durie Award is a testament to Dr. Martin’s outstanding achievements – serving as an inspiration to the entire myeloma community. Dr. Martin’s relentless pursuit of knowledge, compassionate care for patients, and unwavering dedication to scientific advancement have profoundly impacted countless individuals’ lives.” MT

Drs. Thomas G. Martin and María-Victoria Mateos with Yelak Biru, IMF President & CEO

IMF HONORS OUTSTANDING RESEARCHERS – CONTINUED FROM PAGE 10

Nurse Leadership Board

NLB Symposium at The IMF’s nurse leaders educate peers

By Diane Moran IMF Senior Vice President, Business Relationship Management

On April 27, the IMF Nurse Leadership Board® (NLB®) members Beth Faiman, Amy Pierre, Tiffany Richards, and Charise Gleason presented the “New and Emerging Therapies for Multiple Myeloma: Case Studies for Nurses” symposium at the 48th Annual Congress of the Oncology Nursing Society (ONS) held in San Antonio, TX.

Founded in 2006 to improve the nursing care and self-care of patients with myeloma, the NLB is a professional partnership that represents oncology nurses who are experts in myeloma at leading medical centers. The annual ONS Congress is the largest conference dedicated to oncology nursing. The NLB has held symposia at ONS for 17 consecutive years. “This long-running NLB symposia series is one of the ways the NLB shares nursing best practices and the latest data that contribute to improved patient care,” said Beth Faiman, who chaired the symposium.

to reducing disparities,” said Amy. “By engaging with and advocating for each patient, we can help each patient achieve their best possible outcome.”

“Henry”

Charise Gleason presented the second case. “Henry was diagnosed with myeloma in 2015 when he was 64. He received treatment with a combination therapy of Revlimid® (lenalidomide) + Velcade® (bortezomib) + dexamethasone (VRd), followed by ASCT and Revlimid maintenance. Unfortunately, Henry’s myeloma began to trend upward in a biochemical relapse in 2020,” said Charise. “For many patients like Henry, their first relapse can be harder psychologically than their initial diagnosis. Patients who experience long remissions begin to think that they won’t ever relapse, so a relapse comes as a huge shock. We are fortunate, however, that there are so many treatment options for patients with relapsed myeloma. Shared decision-making, when patients and providers agree on a treatment plan, is more important than ever with so many treatment options.”

Survivorship care is very important since patients with myeloma are living longer than ever. “We all have some patients who are 20-year survivors of myeloma,” Charise shared. She then cautioned, “Although patients come to rely on their oncology treatment team because they see us often, they should continue to see their primary care doctor for recommended health screenings and preventive care. We [oncology nurses] are laser-focused on their myeloma, while their primary care doctor has a broader view of their overall health.”

“Maria” and “Paul”

“Margaret”

Amy Pierre began the symposia with some background on myeloma and discussed the first case. “‘Margaret’ is 62-year-old woman who, based on initial testing, is diagnosed with smoldering multiple myeloma (SMM),” said Amy. “At the urging of a friend, Margaret sought a second opinion from a myeloma specialist at an academic center. Sensitive bone imaging revealed lesions on her spine and ribs, and Margaret’s diagnosis was updated to active myeloma that needed treatment.”

In the context of the case, Amy discussed disparities: Black Americans have 2–3 times the rate of myeloma and MGUS (a plasma cell disorder that can progress to myeloma) and are twice as likely to die from myeloma when compared to White Americans. Black Americans are less likely to have access to the latest treatments or to have an autologous stem cell transplant (ASCT) or participate in clinical trials. However, research suggests that when treated equally, Black Americans can have equal or better survival possibly because as a group they tend to have less biologically aggressive disease. “Nurses are crucial

Tiffany Richards presented the final two cases of the symposia. “Both Maria and Paul received multiple prior treatments for their myeloma,” said Tiffany. “We are fortunate to have options available to our patients, like CAR T-cell therapy and bispecific antibodies. However, these new therapies come with new potential side effects that nurses need to be knowledgeable about. In addition to managing the potential side effects, nurses are also a main source of patient education, which is important in shared decision-making.”

Tiffany continued, “It is important to refer patients to a CAR T-cell therapy center as soon as it becomes an option to consider for their next treatment, since each center has a process for prescreening patients.” CAR T-cell therapy is currently FDA-approved only for relapsed myeloma.

Tiffany also reviewed bispecific antibodies. “Patients typically receive their ramp-up doses of a bispecific antibody as a hospital inpatient, but after they have received their initial few doses, patients will receive subsequent doses as an outpatient, often from their local provider (if they have completed REMS certification).”

ONS symposium faculty: Tiffany Richards, Charise Gleason, Amy Pierre, and Beth Faiman

the 2023 ONS Congress to improve

the lives of patients with

myeloma

New and emerging therapies

Next, Beth Faiman reviewed drugs in development: “We owe the wealth of approved myeloma treatments to clinical trials. Minority patients are less likely to participate in clinical trials, which can magnify disparities because clinical trials can provide early access to cutting-edge therapies.” She explained how misconceptions can cause myeloma patients to hesitate about participating in clinical trials. For example, some patients worry that if they participate in a clinical trial, they could receive a placebo and not active treatment. While it is true that phase III clinical trials involve randomization of patients, all patients receive active therapy: either a standard-of-care regimen or the new proposed regimen. “By highlighting the latest research, we aim to empower oncology nurses to engage and educate each patient and their care partners, to reduce disparities, and to enhance shared decision-making.”

The learning objectives of the symposia were:

 Discuss new and emerging treatment regimens for patients with newly diagnosed or relapsed myeloma, including appropriate patient management and patient education.

 Identify healthcare disparities faced by myeloma patients who are part of underrepresented groups, and implement strategies to overcome these disparities.

 Describe strategies to support the patient’s input in therapeutic decisions through shared decision-making.

Slides from the NLB symposia are available for download at imf-ons.myeloma.org. The NLB’s Certified Nurse Educator (CNE) accreditation video program will be made available online in the near future. MT

Visit nlb.myeloma.org to learn how the NLB is improving the nursing care and self-care of patients with myeloma via publications, symposia, multimedia, and research.

For the 17th consecutive year, the ONS symposium faculty of NLB nurses shared best practices and the latest data that contribute to improved patient care

The IMF Hosts the 10th Annual

30+

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

representatives of myeloma advocacy

might help establish best practices for identifying, preventing, and treating myeloma.

On June 2, the 2023 Summit of the IMF’s Global Myeloma Action Network (GMAN) convened in Frankfurt, Germany. Yelak Biru (IMF President & CEO), a 27-year myeloma survivor, opened the Summit with a warm welcome and these words: “An African proverb says, ‘If you want to go fast, go alone. If you want to go far, go together.’ At this 10th Annual GMAN Summit, I want us to go far together, fast!”

Yelak spoke about the gains GMAN has made over the last decade, including establishing the International Myeloma Patient Charter, a bill of rights for patients with myeloma that helps ensure that no matter where in the world a person lives, the following principles apply to people affected by myeloma and those involved in their lives and their medical care. “We believe that all parties involved in a patient’s journey have a responsibility to meet the expectations expressed in this document.” Yelak also talked about building the capacity of myeloma advocacy organizations across the globe, while noting that there is still much to do.

Dr. Brian G.M. Durie (IMF Chairman & Chief Scientific Officer), chair of the International Myeloma Working Group (IMWG), and creator of the Black Swan Research Initiative® (BSRI®), addressed the group via a prerecorded video. He reviewed recent data from the IMF’s iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma) population-based screening study for monoclonal gammopathy of undetermined significance (MGUS) led by Dr. Sigurður Kristinsson (University of Iceland, Reykjavík).

iStopMM is looking at the population of Iceland, where everyone over the age of 40 was invited to participate in the screening for precursors to myeloma and more than half of this population volunteered. The many diverse outcomes from iStopMM will benefit not only Iceland but the myeloma community around the world. Dr. Durie reviewed the iStopMM data and said that the research

Next, we reviewed the recent accomplishments of GMAN and its global mission to improve the lives of myeloma patients, raise myeloma awareness, enhance the capabilities of patient advocacy groups, build the capacity of local myeloma organizations, and increase worldwide access to medicine and treatment. These are just some of our recent activities:

 Reaching 35 million people via social media during the 2023 Myeloma Action Month campaign.

 Translating myeloma statistics and graphs into multiple languages.

 Providing humanitarian aid to Ukraine and to the Republic of Turkey.

 Producing videos about myeloma patients’ treatment journeys.

It’s vital to bring people together from myeloma organizations worldwide so that they can share their challenges, develop solutions, and find ways to better serve the myeloma community at large.

Martine Elias, a member of the GMAN Steering Committee and the IMF Board of Directors, and the Executive Director of Myeloma Canada, shared new governance plans and structures that will help shape a more purposeful focus for GMAN, and help the organization achieve its goal to improve outcomes for myeloma patients globally by bringing world organizations and advocates together. One of the ways in which GMAN supports its mission and its member organizations is by awarding the annual Susie Novis Durie (SND) Grants that help patient advocacy organizations to elevate their work. Three grant recipients from 2022 presented their accomplishments:

 Viorica Cursaru (Myeloma Euronet Romania) shared how the SND Grant supported ensuring continuity of care of Ukrainian refugees who have myeloma and who fled to Romania

In a word, what’s your myeloma story?

Robin Tuohy (USA), Mira Armour (Croatia), Shoshi Sprontz (Israel), Viorica Cursaru (Romania), and Mariana Auad (Argentina) share their answers

Members of the GMAN Steering Committee: Serdar Erdoğan, Martine Elias, Mira Armour, and Yelak Biru. (Hayley Beer is not pictured).

GMAN Summit in Frankfurt, Germany organizations

came together from 25 countries

from Ukraine. These efforts include translating materials and connecting the refugees with appropriate medical specialists in Romania.

 Suvi Sileekangas (Suomen Syöpäpotilaat, Finland) shared how the SND Grant enabled her to hold a hybrid educational event for 140 attendees in Tampere, Finland. Attendees included both myeloma patients and their loved ones, who gathered in person or online to learn from a myeloma specialist, a myeloma patient, and a psychologist.

 Hayley Beer (Myeloma Australia) made a remote presentation about how the SND Grant helped with the diversification of services offered to patients with myeloma, including younger people who have been diagnosed with myeloma. The new online support group is attracting participants from most states and territories in Australia, who attend meetings, webinars, and podcasts that feature guest speakers to address the needs of younger myeloma patients. A list of resources for younger patients is currently in development.

At the heart of the GMAN meeting in Frankfurt were the breakout sessions with GMAN Working Groups. Facilitator Jeff Bateman challenged the Summit attendees to envision what an ideal future would look like for myeloma patients in 2030 in the following 4 areas:

1. Patient access: Access to myeloma treatment around the world.

2. Health policy: How governmental organizations evaluate and value myeloma treatment, including new medicines, and how that affects patients with myeloma.

3. Clinical research: What studies are being undertaken, where the clinical trials are located, and which myeloma patients take part.

4. Capacity building: Which organizations around the world need to be more effective and do more to serve patients with myeloma.

Attendees took part in a brainstorming session to discuss the barriers that may prevent the ideal future from being realized and the concrete steps that each of the GMAN working groups can take to make the envisioned future a reality for myeloma patients. Each of the working groups will continue to meet online during the coming year to accomplish the tasks set at the Summit.

GMAN plans to hold an in-person meeting in Madrid, Spain, in the summer of 2024 to further improve outcomes for myeloma patients worldwide. MT

Yelak Biru in discussion with GMAN colleagues during a breakout session

Myeloma advocates from 25 countries worked to advance the GMAN mission at the 2023 Summit in Frankfurt, Germany

Empowering Patients and Care Partners Update on the Safe Step Act and the HELP Copays Act

By Danielle Doheny IMF Director, Public Policy & Advocacy

The journey of a patient with myeloma can be complicated. I know this from being a part of my dad’s journey with this disease. Thankfully, many different treatment options are available both to the newly diagnosed and to long-term survivors. Now, there are even newer approaches to treating myeloma that can be tailored to an individual patient’s unique disease! However, the access to the best treatments can be challenging. I want to share with you some of the access challenges, as well as the proposed policy solutions. The Safe Step Act and the Help Ensure Lower Patient (HELP) Copays Act would help fix these issues.

The Safe Step Act

Step therapy requires patients to try less expensive medications or treatments before accessing more costly – yet potentially more effective – options prescribed by their doctor. While step therapy is used to control healthcare costs, it often leads to delays in patients receiving the appropriate care, potentially compromising their health outcomes. This is a huge issue when it comes to treating cancer. For myeloma patients, it is crucial to have prompt access to the most effective and evidence-based treatment options.

The Safe Step Act (H.R. 2630/S. 652) aims to ensure that patients, including those with myeloma, have timely access to treatments prescribed by their doctors, especially in cases where the delay could have adverse effects on their health. The Safe Step Act would require insurance companies to implement a clear and transparent appeals process for patients and their doctors to request exceptions to step therapy protocols. This process would consider the specific needs and circumstances of an individual patient and ensure that the patient can receive the most appropriate treatment without undue delay.

The HELP Copays Act

The Help Ensure Lower Patient (HELP) Copays Act (H.R. 830/S.1375) tackles the burden of high prescription drug costs that patients face at the pharmacy. Many individuals with chronic conditions rely on life-saving medications, but exorbitant copayments can create financial strain. Non-adherence to the prescribed treatment can result in potential health complications for the patient. Such individuals depend on help in the form of copay assistance to help afford their medication, and it is essential that they receive the help they need.

Copay accumulators (also called copay maximizers or accumulator adjustment programs) are relatively new cost-containment measures employed by health insurance companies. However, copay accumulators have emerged as a significant obstacle for cancer patients seeking affordable access to life-saving treatments. Traditionally, copay assistance programs sponsored by drug manufacturers help patients cover the cost of expensive medications, ensuring that out-of-pocket expenses do not

become prohibitive barriers to treatment. However, copay accumulators are designed to prevent drug manufacturer copay assistance from counting toward a patient’s deductible or outof-pocket maximum, leaving patients to bear the cost burden alone. The HELP Copays Act bans the practice of copay accumulators and ensures that copay assistance helps those they are intended to assist – the patients.

The IMF Myeloma ACTION Team

As a society, we must strive to ensure that individuals battling cancer can focus on their recovery without being burdened by exorbitant medical costs. Patient advocacy promotes empathy and understanding about the challenges that myeloma patients face and helps educate legislators about these struggles. Becoming an effective advocate is much easier than most people imagine. It can be as simple as sharing your story with the decision-makers in your state or on Capitol Hill in Washington, DC. Advocating for yourself or for a loved one is so empowering.

The IMF’s Myeloma ACTION Team is here to help train you through webinars, virtual meetings, and written materials. You will gain a deeper understanding of the current legislative issues that have the biggest impact on the myeloma community. The IMF can train you to communicate your story and explain the myeloma community’s advocacy priorities to your elected officials. As a member of the Myeloma ACTION Team, you will engage in the following:

 Participate in quarterly team calls.

 Share myeloma advocacy news and alerts with your community.

 Share your personal myeloma experience with legislators.

 Share your experience with the IMF to help shape our advocacy priorities.

 Build relationships with your elected officials –the IMF will help you!

Your voice matters. You can make a positive impact on important policy issues, and the IMF will support you with the tools and information you need to be an effective member of the Myeloma ACTION team. YOU can make a difference! MT

To learn more about the IMF’s advocacy activities or to contact your legislators directly, visit advocacy.myeloma.org . To subscribe to the IMF Advocacy Newsletter, visit subscribe.myeloma.org . To learn more about how you can help, contact us at advocacy@myeloma.org . We welcome your engagement, questions, and ideas.

This support group for myeloma patients and caregivers who have young children offers strength and inspiration through education, empathy, empowerment, and encouragement. Educationally supported by the IMF, this group meets online monthly.

For more information, please visit: MMfamilies.support.myeloma.org

YOU ARE NOT ALONE Virtual Support Group for Multiple Myeloma Families! KNOWLEDGE IS POWER!

Founder

Brian D. Novis

Founder

Susie Durie

Board of Directors

Chairman Dr. Brian G.M. Durie

Chairperson Elect Dr. S. Vincent Rajkumar

Jack Aiello

Christine Battistini

Yelak Biru

Prof. Dr. Mario Boccadoro

Loraine Boyle

Susie Durie

Martine Elias

George T. Hayum

Jason Katz

Benson Klein

Andrew Kuzneski, III

Dr. Robert A. Kyle

Prof. Dr. Heinz Ludwig

Dr. Edith Mitchell

Charles Newman

Matthew Robinson

E. Michael D. Scott

Sanjay Singh

IMF Executive Team

Yelak Biru

President & Chief Executive Officer

Dr. Brian G.M. Durie

Chief Scientific Officer

Jennifer Scarne

Chief Financial Officer

Diane Moran

Senior Vice President, Business Relationship Management

Daniel Navid

Senior Vice President, Global Affairs

Las Voces de Mieloma – Grupo Virtual

Un grupo de apoyo voluntario para pacientes interesados, se anima a los cuidadores, familiares y amigos a unirse a nosotros. Se trata de una excelente manera de conocer e interactuar con otros supervivientes y cuidadores para conocer los últimos avances en el tratamiento y la gestión del mieloma.

Para más información: lasvoces@imfsupport.org lasvoces.support.myeloma.org

Lisa Paik

Executive Vice President, Medical Affairs

Dr. Joseph R. Mikhael

Chief Medical Officer

Mimi Choon-Quinones, PhD, MBA

Senior VP, Global Advocacy, Access, Policy & Research

Peter Anton

Vice President, Marketing

Robin Tuohy Vice President, Support Groups

IMF Staff

Betty Arevalo

Manager, Inventory Control

Becky Bosley

Director, Support Groups

Brittnay Brandon

Coordinator, Meetings

Nancy Bruno

Regional Director, Support Groups

Sarah Chambliss

Meeting & Project Manager, Medical Programs

Kelly Cox

Director, Support Groups and Sr Dir, Regional Community Workshops

Danielle Doheny

Director, Public Policy & Advocacy

Susie Durie

Director, Global Patient Initiatives

Serdar Erdoğan

Director, GMAN and European & Middle Eastern Patient Programs

Jon Fitzpatrick

Meeting & Project Manager, Patient Programs

Lauren Gapinski

Administrative Assistant, Travel & Registration

Sherrie Guerrero

Director, Human Resources

Paul Hewitt

Coordinator, InfoLine

Kevin Huynh

Specialist, Tech Solutions

Katie Ives

Administrative Assistant, Meetings

Marya Kazakova

Editor-in-Chief, Publications

Ilana Kenville

Associate Director, Distinguished Events

Missy Klepetar Coordinator, InfoLine

Sapna Kumar Marketing Strategist

Phil Lange

Director, Accounting

Karla Lemus

Donor Relations Specialist

Jason London Manager, Marketing & Communications

Jim Needham

Publication Design

Meghan O’Connor

Meeting & Project Manager, Content & Communications

Selma Plascencia

Senior Director, Operations

Annabel Reardon

Senior Director, Program Operations & Chief of Staff

Joy Riznikove Database Analyst

Cecilia Romero

Project & Technology Manager, Support Groups

Miko Santos

Senior Manager, Tech Solutions

Narmeen Shammami

Sr Research Project Coordinator

Sarah Solomon

Donor Relations

Brando Sordoni

Senior Associate, Accounting & Distribution

Rafi Stephan

Assistant to the President & Chief Executive Officer

Daria Tabota Coordinator, Marketing & Communications

Jonathan Weitz

Donor Relations

Haleigh Wolfe

Project Manager

International Myeloma Foundation

4400 Coldwater Canyon Avenue, Suite 300 Studio City, CA 91604 USA myeloma.org

800.452.CURE

Change Service Requested

myeloma.org

2023 IMF Calendar of Events

Due to COVID-19 policies, adjustments to the calendar may be made as needed.

July 26 “Ask Me Anything!” with Dr. Joseph Mikhael – FacebookLive

Aug 12 IMF Regional Community Workshop (RCW) – Denver, CO

Aug 18-19 IMF Patient & Family Seminar (PFS) – Los Angeles, CA

Aug 26 IMF Regional Community Workshop (RCW) – Minneapolis, MN

Sep 13 IMF Regional Community Workshop (RCW) West Coast – Zoom

Oct 12 IMF Living Well with Myeloma (LWM) – Zoom

Nov 1 IMF Patient & Family Webinar (PFW) East Coast – Zoom

Nov 4 IMF M-Power Community Workshop – Detroit, MI