Myeloma Today: Fall 2020

Volume 20 Number 4

Fall 2020

Myeloma Today A publication of the International Myeloma Foundation

The IMF marks its 30th Anniversary with a Virtual Comedy Celebration!

“Everybody Loves Raymond” cast reunites for an evening of laughter in support of myeloma research

Also in this edition:

} The CANDOR clinical trial demonstrates the benefit of a potent new combination therapy for early relapse, which is particularly useful in higher-risk myeloma patients PAGE 8

This edition of Myeloma Today is supported by Amgen • Bristol Myers Squibb • Genentech • Oncopeptides • Sanofi Genzyme • Takeda Oncology

International Myeloma Foundation

Founder

President & CEO

Brian D. Novis

Susie Durie

Board of Directors

Chairman Dr. Brian G.M. Durie 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 Dr. S. Vincent Rajkumar

Matthew Robinson E. Michael D. Scott

IMF Executive Team Chief Financial Officer & Chief Operating Officer Jennifer Scarne jscarne@myeloma.org Chief Medical Officer Dr. Joseph Mikhael jmikhael@myeloma.org

Senior Vice President, Strategic Planning Diane Moran dmoran@myeloma.org

Senior Vice President, Clinical Education & Research Initiatives Lisa Paik lpaik@myeloma.org

Senior Vice President, Global Affairs Daniel Navid dnavid@myeloma.org

Senior Vice President, Philanthropy Lynn K. Green, Ed.D. lgreen@myeloma.org

Senior Vice President, Global Advocacy, Access, Policy & Research Mimi Choon-Quinones, PhD, MBA mchoon-quinones@myeloma.org

Vice President, Marketing Peter Anton panton@myeloma.org

IMF Staff Inventory Control Manager Betty Arevalo marevalo@myeloma.org Senior Director, Member Events Suzanne Battaglia sbattaglia@myeloma.org Regional Director, Support Groups Nancy Bruno nbruno@myeloma.org Director, Support Groups & Regional Community Workshops Kelly Cox kcox@myeloma.org Director, Public Policy & Advocacy Danielle Doheny ddoheny@myeloma.org Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs Serdar Erdoğan serdogan@myeloma.org Donor Relations Heather Fishman hfishman@myeloma.org Support Group Coordinator Jon Fitzpatrick jfitzpatrick@myeloma.org

Meeting Registration & Guest Relations Abigail Guzman aguzman@myeloma.org

Assistant to Senior Director, Member Events Karla Lemus klemus@myeloma.org

Regional Director, Support Groups Kelley Sidorowicz ksidorowicz@myeloma.org

Director, Regional Community Workshops Brenda Hawkes bhawkes@myeloma.org

Senior Director, Public Policy & Advocacy Robin Levy rlevy@myeloma.org

Donor Relations Sarah Solomon ssolomon@myeloma.org

InfoLine Coordinator Paul Hewitt phewitt@myeloma.org

Senior Research Project Coordinator Amirah Limayo alimayo@myeloma.org

Accounting & Distribution Brando Sordoni bsordoni@myeloma.org

Web Specialist Kevin Huynh khuynh@myeloma.org

Publication Design Jim Needham jneedham@myeloma.org

Assistant to the President Rafi Stephan rstephan@myeloma.org

Editor-in-Chief, Publications Marya Kazakova mkazakova@myeloma.org

Administrative Assistant, Meetings & Events Meghan O’Connor moconnor@myeloma.org

Assistant Director, Member Events Ilana Kenville ikenville@myeloma.org

Director, Operations Selma Plascencia splascencia@myeloma.org

InfoLine Coordinator Missy Klepetar mklepetar@myeloma.org

Director, Meetings & Events Annabel Reardon areardon@myeloma.org

Manager, Marketing & Communications Sapna Kumar skumar@myeloma.org Accountant Phil Lange plange@myeloma.org

Database Analyst Joy Riznikove jriznikove@myeloma.org

Vice President, Support Groups Robin Tuohy rtuohy@myeloma.org InfoLine Coordinator Judy Webb jwebb@myeloma.org Donor Relations Jonathan Weitz jweitz@myeloma.org

Web Producer Miko Santos msantos@myeloma.org

This free issue of Myeloma Today© (Volume 20, Number 4) is dated November 15, 2020. Myeloma Today© is a quarterly (Spring, Summer, Fall, and Winter) publication of the International Myeloma Foundation, located at 12650 Riverside Drive, Suite 206, North Hollywood, CA 91607 USA

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A Message from the IMF President & CEO Dear Reader, It’s hard to believe that in October 2020, the IMF celebrated our 30th anniversary!

are now more than 150 local support groups in the US, with many more groups worldwide.

In 1989, I was engaged to Brian D. Novis when he underwent a routine blood test that led to his myeloma diagnosis. Neither of us had ever heard of it before. Not long after, together with Dr. Brian G.M. Durie, we brainstormed about what would become the International Myeloma Foundation. The IMF was founded in 1990, dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

In 2000, the IMF initiated the annual Robert A. Kyle Lifetime Achievement Award, which recognizes outstanding contributions in the field of myeloma. In 2002, I testified before the US Senate Appropriations Subcommittee on Labor, Health and Human Services about the need to fund cancer research at the National Cancer Institute.

Brian Novis died in 1992 and, in my mind, he gave his life for the IMF. That same year, the IMF launched this very publication, Myeloma Today. Soon after, I was attending a large medical conference, watching healthcare Susie and Brian Novis professionals meet with myeloma experts. I thought, “But where are the patients? Why are they not meeting with these experts?”

Through this experience, the idea for IMF’s Patient & Family Seminars was born. The first seminar was held in 1993 in Los Angeles.

IMF Support Group Leaders Summit, 2019

In 1994, the IMF began to fund and foster myeloma research through the Brian D. Novis Research Grant program. In 1999, the IMF held its first Support Group Leaders Summit – there

IMF International Myeloma Working Group Summit, 2019

In 2003, the IMF formed a Scientific Advisory Board, with experts who published the very first management guidelines for myeloma. In 2006, the IMF’s International Myeloma Working Group (IMWG) published the first International Staging System (ISS) for myeloma, and established the IMF’s Nurse Leadership Board (NLB) with the mission to improve the nursing care for myeloma patients.

“There is a working myeloma community now, which was not the case in the past. There is a community working together to do the very best for myeloma patients everywhere.

The outcomes have dramatically improved and they will continue to improve more in the coming 5 to 10 years.”

– Dr. Brian G.M. Durie, IMF Chairman (continues on next page)

Susie Novis Durie testifies before the US Senate Appropriations Subcommittee on Labor, Health and Human Services, 2002

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A Message from the IMF President & CEO DEAR READER – CONTINUED FROM PREVIOUS PAGE

The Iceland-based iStopMM research project, launched by the IMF Black Swan Research Initiative® in 2016, will help myeloma patients globally Annual Meeting of the IMF Nurse Leadership Board, 2019

When my dear friend Loraine Alterman Boyle lost her husband, revered comic actor Peter Boyle to myeloma in 2006, she transformed her grief into healing by chairing the IMF’s Celebrating Peter Boyle benefit, later renamed the Annual Comedy Celebration (turn to page 18 to read about this year’s virtual event).

IMF Global Myeloma Action Network Summit, 2019

The past decade has been remarkable for the IMF, fighting myeloma on all fronts and around the world! The IMWG continues to chart the future of myeloma treatment and care, and many patients are living longer and are experiencing improved quality of life.

In 2011, the IMF established the first-of-its-kind Asian Myeloma Network (AMN), comprised of myeloma experts from China, Hong Kong, Malaysia, Taiwan, Japan, South Korea, Singapore, and Thailand. The AMN is now providing physician education and patient support throughout the Asian region. In 2015, the IMF established the Global Myeloma Action Network (GMAN), a network of patient advocates that works to improve the lives of myeloma patients worldwide.

IMF Asian Myeloma Network Summit, 2019

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Since 2012, the IMF’s Black Swan Research Initiative® (BSRI®) has been the IMF’s signature project to develop the first definitive cure for myeloma, launching the Iceland-based iStopMM project in 2016. This project is tracking approximately 120,000 adults in Iceland for the earliest signs of myeloma. And iStopMM is only one of 40 ongoing projects by the BSRI, and researchers are making great progress, with new and exciting study data that promises to make 2020 a banner year!

“It is almost impossible to believe what has happened over the last 30 years, the progress that has been made and all of the benefits that have become available for patients with multiple myeloma!”

– Dr. Robert A. Kyle, Mayo Clinic, Rochester, Minnesota

I am proud to say that 30 years after its founding, the IMF stands at the forefront of myeloma research, and patients are always at the heart of all our work. It used to be that a cure for myeloma was a dream somewhere far, far in the distance.

But as I look forward now, I can see it. And I hope you can too.

Warm regards,

Susie Durie, IMF President & CEO

Susie Durie and Dr. Brian G.M. Durie receive a joint honorary doctorate in recognition of scientific excellence from the Vrije Universiteit Brussel in Belgium. Jacques Cousteau, Nelson Mandela, and Václav Havel are among past recipients of the award.

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Scientific & Clinical

The 11th Annual IMWG Summit – A Great Success!

Keynote Address

By Dr. Brian G.M. Durie IMF Chairman of the Board

The IMF hosted the 11th Annual Summit of the International Myeloma Working Group (IMWG) in virtual fashion on August 25–26, 2020. Although the IMWG Summit was held online, it continued the tradition of focusing on the latest myeloma research from experts around the world.

Prof. Stefánsson presented a brilliant lecture on population genetics based on his more than 20 years of work at deCODE. He helped the audience understand the origin and impact of individual gene mutations on disease predisposition. He emphasized how clonal expansion of cells with particular mutations is required to have an effect in the body.

An innovative platform allowed 60 members of the IMWG to participate, using a wall of interactive monitors to communicate with speakers and panelists. It was possible to have 2-, 3and 4-way conversations and invite commentary from those on the wall.

There has been only a little research so far on IgM-type MGUS. To help reveal the genetic basis for MGUS and plasma cell disorders, we now await with great anticipation the ongoing work

by Prof. Sigurdur Kristinsson of the IMF Black Swan Research Initiative-supported iStopMM project.

“It felt like we were all sitting in the same room,” noted Dr. Shaji Kumar (Mayo Clinic, Rochester, Minnesota). Additional comments arrived via chat box from more than 100 additional participants and observers.

Plenary Lectures

Although everyone missed the camaraderie, the ability to chat personally, and the sharing of stories, the traditional structure of the Summit was retained: a Keynote Speech, this year by Prof. Kári Stefánsson (Founder & CEO, deCODE genetics, Reykjavik, Iceland); four plenary lecture topics; and four Working Group Committee reports to the IMWG membership.

There were many takeaways from the two-day event.

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Frontline therapy The key question in the session on frontline therapy, chaired

by Prof. Pieter Sonneveld (Erasmus MC Cancer Center, The Netherlands), was whether or not we are heading toward the use of a four-drug combination – a “quadruplet” – in the frontline setting. The answer delivered by this panel was a decisive yes. (continues on next page)

Dr. Brian G.M. Durie

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Scientific & Clinical 2020 IMWG SUMMIT – CONTINUED FROM PAGE 5 However, many issues remain, not least of which are access and costs. After presentations by Dr. S. Vincent Rajkumar (Mayo Clinic, Rochester) on triplet combinations, and Dr. Paul Richardson (Dana-Farber Cancer Institute, Boston, Massachusetts) on quadruplets, it was clear that further studies are needed to show decisively that a combination of, for example, Darzalex® (D) + Velcade® (V) + Revlimid® (R) + dexamethasone (d) produces better survival versus the triplet of VRd alone. This discussion linked directly to the next topic, minimal residual disease (MRD) assessment.

therapies, bispecific antibodies, and the antibody drug conjugate (ADC) Blenrep.

Minimal Residual Disease (MRD) assessment

On the research side, the establishment of a registry for patients treated with anti-BCMA therapies, as well as a virtual tissue bank, were enthusiastically discussed.

The MRD session was chaired by Prof. Jesús San Miguel (University of Navarra, Spain), and comprehensively covered the following: • The role of MRD testing as an endpoint (Dr. Nikhil Munshi, Dana-Farber Cancer Institute), • The MRD tests currently available (Dr. Bruno Paiva, University of Navarra, Spain), • Whether or not MRD can be a surrogate indicator of potential cure (Dr. María-Victoria Mateos, University of Navarra, Spain).

MRD is an essential endpoint that indicates, early on, the potential for very long survival. We all eagerly await the approval of MRD as a surrogate endpoint by the FDA. The data are being submitted by the i2TEAMM, a group of international myeloma researchers working to validate MRD testing as a surrogate endpoint that is superior to traditional endpoints, such as CR (complete remission) or even sCR (stringent complete response) in myeloma clinical trials. There is true optimism about approval in the coming months.

Immune therapies This session, chaired by Dr. Thomas Martin (University of California, San Francisco) and Dr. Yi Lin (Mayo Clinic, Rochester), examined the questions that garnered the most interest at the IMWG Summit: What will be the role of CAR T-cells? And what about bispecific antibodies? Dr. Saad Usmani (Atrium Health, Charlotte, North Carolina) described these as “the poor man’s CAR T.” The fact that Blenrep® (belantamab mafodotin) was just approved by the FDA and, on the second day of the Summit, by the European Medicines Agency (EMA) was a focus of attention.

There is great enthusiasm for using this new, anti-BCMA agent as a potent immune therapy in the relapsed setting. It is readily available “off the shelf” and has an easy, once-every-threeweeks administration schedule.

Overall, the sentiment was that each of the new immune therapies will have a niche and will move earlier and earlier in the treatment paradigm to take advantage of the unprecedented, very deep responses that are being achieved with CAR T-cell 6

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CAR T-cell therapies, it was noted, can be an attractive option for patients with high-risk disease in whom achieving deep MRDnegative response can be of particular benefit. There is also the notion that CAR T-cell therapies in particular may end up replacing traditional ASCT (autologous stem-cell transplant). Patient preference will continue to be an important part of all types of management discussions.

Relapse treatments The highlight of this session, chaired by Dr. Joseph Mikhael (Translational Genomics Research Institute, Phoenix, Arizona), was the review of the “New IMWG Guidelines for RRMM,” presented by Dr. Philippe Moreau (University Hospital Nantes, France). This has been a challenging project, but the final manuscript is ready for submission and publication. Important discussions emerged about what is recommended and what is truly feasible in many parts of the world. Many combinations, such as daratumumab + pomalidomide + dexamethasone (DPd), are not reimbursed nor actually available. As a result, less effective regimens must be substituted. This is really disheartening for doctors and unfair for patients. Broad solutions remain elusive.

Working Group Committees Highlights of the Summit Working Group reports included: • A summary of the upcoming publication of guidelines for use of mass spectrometry, presented by Dr. David Murray (Mayo Clinic, Rochester). This very sensitive blood-test technology will revolutionize both diagnostic testing and response monitoring in the coming years.

• T he new criteria for identification of high-risk smoldering myeloma (the 2/20/20 system), presented by Drs. Kumar and Mateos.

• Planned projects and studies by the Immune Therapy Committee led by Drs. Martin and Lin, which received enthusiastic endorsement.

• The many accomplishments and upcoming plans by the Bone Committee led by Dr. Evangelos Terpos (University of Athens, Greece) and Dr. Jens Hillengass (Roswell Park, New York).

2020 IMWG Awards It was a disappointment that in-person award presentations were not possible this year. However, Prof. Thierry Facon (University of Lille, France) was announced as the recipient of the 2020 Robert A. Kyle Lifetime Achievement Award and Prof. Wee Joo Chng (Singapore University) received the 2020 Brian G.M. Durie Outstanding Achievement Award. In lieu of info@myeloma.org

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the formal ceremony, both recipients provided heartfelt thanks and appreciation.

2020 IMWG Summit Closing Session As usual, the closing session included a discussion of treatment algorithms from the U.S. Frontline options were presented by Dr. Rajkumar, while Dr. Moreau presented options in the relapsed setting. These practical recommendations for doctors are greatly appreciated, coming as they do from such noted experts.

We followed up with an open-question session, an extremely lively and productive discussion among panelists, IMWG members “on the wall,” and those who chimed in via the chat box.

This format allowed many to raise questions of interest and concern, including suggestions for next year’s Summit. Dr. Robert A. Kyle was able to join in briefly, describing the incredible progress made in myeloma treatments over the past 20 years. It was an enormous treat for everyone!

Prof. Wee Joo Chng

Prof. Thierry Facon

Dr. Robert A. Kyle

Dr. Yi Lin

Dr. Thomas Martin

Dr. María-Victoria Mateos

Dr. Joseph Mikhael

Dr. Philippe Moreau

Dr. Nikhil Munshi

Dr. Bruno Paiva

Dr. S. Vincent Rajkumar

Dr. Paul Richardson

Prof. Jesús San Miguel

Prof. Pieter Sonneveld

Prof. Kári Stefánsson

Action Items and Takeaways As usual, there are many items that will extend the work of the IMWG beyond the very successful two-day Summit event.

IMWG action items

• The IMWG Risk Stratification Model For Smoldering Multiple Myeloma (SMM), accepted for publication in the Blood Cancer Journal (epub date expected October 2020).

• Mass Spectometry Guidelines, submitted to the Blood Cancer Journal September 2020.

• Bone Disease Manuscript, accepted for publication in The Lancet Oncology (epub expected).

• The “International Myeloma Working Group (IMWG) recommendations for the treatment of relapsed and refractory multiple myeloma” manuscript will be submitted to The Lancet Oncology for publication October 2020.

• Immune therapies planning with CRS Standardization and BCMA Registry. Also under consideration, the “Virtual Tissue Bank.”

• Follow-up to solicit new projects and to update forward planning will be at the virtual IMWG Breakfast at the time of ASH.

In closing, Susie Durie (IMF President, Founder, & CEO) and the 2020 IMWG Summit co-chairs Drs. Rajkumar, San Miguel, Moreau and I expressed our appreciation for the active engagement and contributions of all participants.

The unique virtual setting of the 2020 IMWG Summit made for a truly memorable two days. Researchers around the world were able to continue the collaborations and interactions that are a feature of all IMWG meetings and that yield wonderful results for patients. MT The mission of the IMWG Summit is to identify, support, and implement the most promising research to prevent the onset of active disease, to improve treatment, and to find a cure. For more informatio, please visit imwg.myeloma.org.

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Susie Durie

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Scientific & Clinical

What Does the CANDOR Clinical Trial Mean for Patients with Myeloma?

By Dr. Joseph Mikhael IMF Chief Medical Officer

Frontline exposure to Revlimid® (lenalidomide) and Velcade® (bortezomib) has resulted in a need for Revlimid-free and Velcade-free novel therapies for patients with relapsed and/or refractory multiple myeloma (RRMM). The combination therapy of Kyprolis® (carfilzomib) + dexamethasone (Kd) has demonstrated efficacy and safety in the RRMM patient population. The CANDOR clinical trial is comparing the efficacy and safety of Kd combination therapy to the experimental therapy of Kyprolis + Darzalex® (daratumumab) + dexamethasone (KDd or Dara-Kd) in patients with RRMM. CANDOR is a phase III, multicenter, open-label, randomized study in participants who have received 1 to 3 prior therapies. This study is assessing 466 patients from 102 sites in North America, Europe, Asia, and Australia. Study patients receive the treatment for a maximum of 4 years or until

confirmed disease progression, unacceptable toxicity, withdrawal of consent, or death. The CANDOR study – NCT03158688 – is registered with clinicaltrials.gov and is active but not recruiting.

The primary endpoint is progression-free survival (PFS), defined as the time from randomization to the earlier of either disease progression or death (due to any cause).

Participants are evaluated for disease response and progression according to the International Myeloma Working Group (IMWG) Uniform Response Criteria (URC).

After median follow-up of approximately 17 months, median PFS was not reached in the KDd arm versus 15.8 months in the Kd arm, demonstrating prolonged PFS in KDd versus Kd in patients with RRMM.

Dr. Saad Usmani (Levine Cancer Institute, Charlotte, NC), one of the CANDOR study investigators, offered his perspective to readers of Myeloma Today on three key questions.

MT: What are the main benefits of having the new triplet combination

available to patients with RRMM? Dr. Usmani: There are very few lenalidomide-free regimens to treat relapsed and/or refractory myeloma. Dara-Kd provides the clinicians an option for patients who are not eligible for a lenalidomide-based option due to prior exposure or tolerability.

MT: When would you suggest using the Dara-Kd combination in practice?

Dr. Usmani: Patients need to discuss treatment options with their physicians to individualize their therapies. From a clinical practice standpoint, the Dara-Kd regimen is a good option for patients who have progressed on lenalidomide [Revlimid®]. The Dara-Kd regimen would also be a good option for patients who have pre-existing neuropathy due to another health issue or prior use of bortezomib [Velcade®].

MT: Is this the best way to overcome Revlimid (lenalidomide) resistance

in patients with relapsed myeloma?

Dr. Usmani: The best approach is to consider non-cross resistant treatment options in this scenario.

The CANDOR clinical trial is very important to the care of myeloma patients as it demonstrates the benefit of combining two potent drugs in early relapse. Since most myeloma patients who are on a maintenance therapy are taking lenalidomide, it is very attractive to consider an approach that excludes that class of drug – immunomodulatory agents –

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while employing two other agents that have not previously been used. Furthermore, this is particularly useful in higher-risk myeloma patients in whom we would want to use a drug like carfilzomib. CANDOR is an important study, and we will continue to share information about it with readers of Myeloma Today as the data continues to mature. MT

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Education & Awareness

#W

SDR I E R E H

JOE

Diversity, Equity, and Inclusion in Myeloma and at the IMF

By Dr. Joseph Mikhael IMF Chief Medical Officer

We all know that 2020 has been a unique, challenging, and even a devastating year. My sincere hope is that despite all of these challenges, we come together more fully in our fight against myeloma.

Many of the recent events have caused us all – and should cause us all – to reflect on our personal values. Critical issues of diversity, equity, and inclusion have indeed been brought to the forefront and it has become apparent that they affect all avenues of our life.

Although there is no perfect definition of these, I suggest the following: ¡E quity means to guarantee fair treatment, access, opportunity, and advancement for all while striving to identify and eliminate barriers that have prevented the full participation of some groups. ¡V aluing diversity means that we recognize and respect everyone’s unique qualities and attributes. ¡ I nclusion means that all individuals feel respected, accepted, and valued.

As a person of color, I can absolutely relate to challenging situations of prejudice, bias (conscious and unconscious), and racism.

My genuine hope is that all of us can be committed to equity, on both a personal and professional level, and value the diversity that makes us so much stronger together. This is both a mindset and a deliberate practice – not only to “accept” our differences but truly celebrate and embrace them.

At the IMF we are deeply committed to ALL myeloma patients, independent of background. We have been specifically dedicated in our four pillars of activity of research, education, support, and advocacy to vulnerable populations. Indeed, we have been engaged in activities over the last 30 years in multiple ways including our more than 150 support groups, our Global Myeloma Action Network, our Asian Myeloma Network, our presence and collaboration with the African American and Hispanic communities, and many more. You can learn more at our diversity website myeloma.org/diversity/diversity-inclusion.

Furthermore, we have increased our efforts in many arenas. We have created a Diversity Inclusion Team to oversee our diversity activities. We have initiatives in motion to address the disparities in myeloma, working to support all patients as we seek a cure.

One of the major initiatives is our African American Initiative.

Sadly, the statistics are clear that this population is particularly vulnerable. A few key facts include: 1. Myeloma is the most common hematologic cancer in African Americans, 2. MGUS and myeloma is TWICE as common in African Americans, 800.452.CURE toll-free in USA and Canada

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3. Survival improvements in myeloma have not been as pronounced in African Americans – for every 1.3 years of life gained for Whites, only 0.8 years of life are gained for African Americans, 4. African Americans are younger at diagnosis by about 5 years, 5. T here is a longer time to diagnosis from the onset of symptoms, 6. Africans Americans are less likely to receive TRIPLET therapies, 7. A frican Americans are less likely to receive stem cell transplants, 8. Although African Americans comprise 20% of all myeloma patients, they represent only 5-6% of patients on clinical trials, 9. T here are biologic differences in African Americans with myeloma that may lead to lower risk disease, 10. W hen African Americans receive equal access care, their survival outcomes are equal, and at times, better than Whites.

These facts cause us to take action to overcome these disparities. The core vision of the IMF’s African American Initiative is to improve the short and long-term outcomes of African American patients through engagement of the community, education of healthcare providers, and support of patients. To achieve this vision we have enacted several activities that include deeply engaging and collaborating with the medical and non-medical African American community to: ¡ Raise awareness of the condition, ¡ Educate about common signs and symptoms of the disease, ¡ Provide resources at the IMF and local centers for myeloma care, ¡ Support patients, their caregivers, and their families in their communities.

Furthermore, we are engaging in an education campaign to primary care providers to emphasize the need for early and accurate diagnosis of myeloma in all patients, but in particular African American patients – as it is clear they have a longer lag between symptoms and diagnosis.

We have plans for many cities and communities to be involved, and I truly believe we can close some of the gap in access to care, engagement in the myeloma community, and even in survival outcomes. MT FALL 2020

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Nurse Leadership Board Kevin Brigle, PhD, NP Massey Cancer Center Virginia Commonwealth University Donna D. Catamero, ANP-BC, OCN, CCRC

Myeloma Translational Research Mount Sinai Health System Kathleen Colson, RN, BSN, BS Dana-Farber Cancer Institute Deborah Doss, RN, OCN Dana-Farber Cancer Institute Beth Faiman, PhD, RN, MSN, APN-BC, AOCN®, FAAN

Cleveland Clinic Taussig Cancer Institute Elizabeth Finley-Oliver, MSN, ARNP, AGNP-BC

H. Lee Moffitt Cancer Center & Research Institute Charise Gleason, MSN, NP-C, AOCNP Winship Cancer Institute of Emory University Michaela Hillengass, RN* Roswell Park Comprehensive Cancer Center *German certified

Patricia A. Mangan, RN, MSN, APRN-BC

Abramson Cancer Center University of Pennsylvania Ann McNeill, RN, MSN, APN John Theurer Cancer Center Hackensack University Medical Center Teresa S. Miceli, RN, BSN, OCN William von Liebig Transplant Center Mayo Clinic – Rochester Kimberly Noonan, DNP, ANP-BC, AOCN

Dana-Farber Cancer Institute Amy E. Pierre, RN, MSN, ANP-BC Memorial Sloan Kettering Cancer Center Tiffany Richards, PhD, ANP-BC, AOCNP®

MD Anderson Cancer Center Sandra I. Rome, RN, MN, AOCN, CNS Cedars-Sinai Medical Center Mary Steinbach, DNP, APRN Huntsman Cancer Institute University of Utah Joseph D. Tariman, PhD, RN, ANP-BC, FAAN

College of Science and Health De Paul University Daniel Verina, DNP, RN, ACNP-BC Mount Sinai Medical Center International Affiliates Tracy King, RN, MN Institute of Hematology Royal Prince Alfred Hospital Cindy Manchulenko, RN, BN, MSN BC Cancer Center

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The NLB Convenes a Virtual 2020 Annual Meeting

By Diane Moran IMF Senior Vice President, Strategic Planning

The IMF founded the Nurse Leadership Board® (NLB) in 2006 as a professional partnership to represent nurse experts caring for myeloma patients. Comprised of nurses from leading myeloma institutions in the US and abroad, the NLB is improving the nursing care and self-care of patients with myeloma via consensus publications, symposia, multimedia, and research.

NLB members engage in year-round activities in patient education, nurse education, and nurseled research projects. Members also meet annually to report on past and ongoing activities, review goals and objectives, and plan patient care initiatives and related projects.

The 16th annual NLB meeting was held online over the course of three days, September 25–27, 2020. The event was guided by Beth Faiman (Chair) and Kimberly Noonan (Co-Chair), and included the participation of 16 additional NLB members. The meeting was opened by Diane Moran (IMF Sr. VP, Strategic Planning), who warmly welcomed all the attendees and thanked the industry sponsors who made the event possible. Diane congratulated Mary Steinbach and Michaela Hillengass, who are now full members of the NLB, and welcomed back Donna Catamero.

Next, Diane reviewed the history of the IMF upon its 30th anniversary. From its humble beginning in 1990, the IMF has grown into an organization with global reach that remains dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

Diane also celebrated the 14-year history of the NLB, which has educated thousands of nurses and affected hundreds of thousands of patients and their caregivers.

NLB Year in Review Kimberly Noonan spoke about the NLB’s accomplishments over the past year, including the successful symposium held virtually at the 2020 Oncology Nursing Society (ONS) Congress for nurse attendees, which continues to be available online for CNE credit. At the 2019 International Myeloma Workshop (IMW), NLB members

presented a poster on the Development of a Patient Decision Aid, another significant accomplishment. During the past year, NLB nurses published several articles on topics of importance to patients with myeloma. Additionally, NLB nurses continued to directly educate myeloma patients via IMF Patient & Family Seminars, Regional Community Workshops, Living Well Teleconferences, and Support Group meetings and related events. The paramount accomplishment for the year is the NLB’s Myeloma University for Nurses, which is in production and will launch in 2021 to provide essential nurse education in module format. This project has become even more important now that in-person contact is limited due to COVID-19.

NLB Priorities Robin Tuohy (IMF VP, Support Groups) contributed the patient and caregiver perspective when she shared her family’s 20-year journey with myeloma after her husband’s diagnosis. Robin became a caregiver, and she and her husband became leaders of a myeloma support group.

Robin served as the representative of all the other myeloma patients and caregivers who are at the heart of the NLB mission.

Next, Beth Faiman reported on the results of a pre-meeting survey, and the NLB members aligned on the projects that had the highest priority: tip sheets for patients and caregivers, patient tools, a patient care plan, videos, and patient cases for nurse education.

Amy Pierre presented data that show outcome disparities faced by African American patients with myeloma. Although African Americans tend to have higher rates of myeloma, it tends to be lower-risk disease, providing opportunities for good outcomes with appropriate treatment.

However, African American myeloma patients tend to have greater treatment delays at every step from diagnosis onward, as well as reduced rates of stem cell transplantation. Plans for addressing disparities were discussed. info@myeloma.org

myeloma.org

Michaela Hillengass

Charise Gleason

Tiffany Richards

The Doctors Dr. Joseph Mikhael (IMF Chief Medical Officer) provided a glimpse of the future of myeloma therapy by addressing the evolving landscape and new drugs. The myeloma field has undergone a huge change over the last decade, and the next decade will likely see even more advances.

sufficient number of transplants have been completed. Mary plans to publish the results of her experience. Currently there is no nursing school in Abu Dhabi, and this may be an opportunity for future collaboration with the NLB.

NLB Working Groups

Dr. Matt Faiman (MD, MBA, FACP) shared tips and clinical pearls from his years of experience with telehealth. He emphasized that patient preferences are evolving and, therefore, providers must adjust the delivery of healthcare. Telemedicine has changed from the introduction of the telephone in the late 1800s, and new entrants into the healthcare space are disrupting healthcare delivery. Furthermore, the current pandemic has increased interest in virtual visits, with the Baby Boomer generation using telehealth even more than Millennials in some categories.

Although there is increasing acceptance of telehealth, barriers do exist. For information about the informative Telehealth webinar from the IMF, please see page 21.

In the course of the three-day virtual meeting, there were multiple times when NLB nurses worked in smaller groups on specific projects and tasks. During one such session, the nurses created or updated patient tip sheets on a wide variety of important topics: infection, deep-vein thrombosis, pain management, fatigue, corticosteroids, and care coordination. The nurses also worked on a patient care plan and a patient tool on telehealth, and began developing patient cases that can be used within a number of teaching formats. The patient education slide deck was reviewed, and patient education video clips on targeted topics entered the planning stage of development.

Dr. Brian G.M. Durie presented an update on the IMF’s Black Swan Research Initiative® and reviewed the recent International Myeloma Working Group (IMWG) Summit (see page 5 for more information). Dr. Durie also discussed COVID-19, from the spread of the virus globally from the Wuhan region of China, to the Lombardy region in Italy, and more. Much is unknown about the COVID-19 infection, and it remains an important concern for patients with myeloma. An Asian study suggests that the death rate for patients with myeloma infected with COVID-19 may be higher than for age/comorbidity matched controls (30% vs 24%).

Much was accomplished in the course of the three days of well-structured virtual sessions. Although pivoting from an in-person annual meeting to an online format required some adjustments, the level of productivity and the supportive camaraderie among the nurses didn’t skip a beat. The important work of the NLB continues. MT Please visit nlb.myeloma.org to learn more about the work of the IMF’s Nurse Leadership Board

Abu Dhabi Transplant Program Mary Steinbach discussed her experiences with the Abu Dhabi Bone Marrow Transplant Program in the capital city of United Arab Emirates. The program is a partnership between the Abu Dhabi Stem Cell Center and the University of Utah. It was set up to allow access to transplant for Abu Dhabi residents. FACT accreditation of the program is planned in 1-2 years once the 800.452.CURE toll-free in USA and Canada

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Advocacy

Accumulator Adjustment Programs Does this insurance benefit design have an impact on your access to medications?

By Robin Levy IMF Senior Director, Public Policy & Advocacy

Many myeloma patients receive help from drug manufacturer assistance programs to help them afford their medications, but this could be in jeopardy for some people. We wanted to make myeloma patients and advocates aware of accumulator adjustment programs, a disturbing trend in insurance benefit design that could soon have an impact on patients’ access more widely.

What is a copay accumulator program?

When patients receive help from manufacturer assistance programs, typically they count towards their deductible and patients are able to continuously afford their medications with little interruption. Copay accumulator programs prohibit manufacturer assistance for these medications to count towards a patient’s deductible or out-of-pocket maximum. Patients who have reached their deductibles in the past with the help of copay assistance provided by a pharmaceutical company could now be faced with paying large bills for their medications in order to meet their deductibles if their insurance plan allows for the usage of copay accumulator programs.

To make matters worse, it can be extremely difficult to know if your plan has a copay accumulator program. These programs often go by other names depending on the insurer implementing them and can be quite deceptive. Sadly, many people find out their plans have copay accumulator programs when it is too late, typically mid-year while at their pharmacy to fill a prescription.

If generics drugs are not available, this could pose a large problem for people with myeloma. The IMF has advocated to ensure that these practices can be used only in cases where generics exist, but presently this is not the case with all programs.

This issue has been an increasing threat to patients, and the situation has gotten more complicated. We wrote our first piece warning patients about this issue back in 2018, when it was less widely practiced, and issues were being seen by patients with state-regulated plans and living in certain areas. In fact, some states have already enacted or proposed legislation that would ban or place reasonable limits on copay accumulator programs in plans regulated in their state. That said, this is an issue of increased importance because the Department of Health and Human Services’ (HHS) 2021 Notice of Benefit and Payment Parameter (NBPP) rule includes language that would allow copay accumulator programs to be implemented by insurers.

What is IMF doing to stop this?

Since 2018, the IMF has been working hard to combat this issue.

A coalition of patient advocacy groups quickly formed with the goal of helping educate policy makers and come up with viable solutions to the problem. The coalition focuses on educating and proposing solutions to both state and federal policy makers.

The coalition has already produced success at the state level with the passage of state bills. The group has also worked with lawmakers in attempt to delay the changes in the 2021 NBPP rule, and we have provided endorsement of the Preserving Patient Savings on Drug Costs Act. We have prepared advocacy action alerts so you can get involved, too. You can quickly send a prepared message to your legislators by visiting advocacy.myeloma.org and going to the federal action center. If this issue has an impact on you, we hope you will join is in taking this and further actions.

Copay accumulator programs would specifically affect people taking specialty medications who receive copay assistance from the drug’s manufacturer. Traditionally, copay assistance would help these patients reach their deductible. However, copay accumulator programs change this.

While the situation is disheartening, the IMF is prepared to fight for patients. It is imperative for us to have stories to share with policy makers. Already, we’ve had several patients reach out to us because they are impacted by copay accumulators. We are thankful that they have shared their stories.

If you have been impacted by these programs and are willing to share your personal experiences, please email us as advocacy@myeloma.org. MT

Insurers justify the usage of these programs because they believe it will push patients onto generic drugs and put pressure on drug companies to reduce costs. However, many of the drugs potentially impacted do not have generic equivalents.

If you would like to follow the IMF Advocacy team’s efforts, or are interested in getting involved and being guided through the process of engaging with Congress, please visit advocacy.myeloma.org or sign up for the IMF Advocacy Newsletter at subscribe.myeloma.org

Who could these programs impact?

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info@myeloma.org

myeloma.org

VAM Focuses Efforts on Burn Pit Related Legislation The International Myeloma Foundation’s Veterans Against Myeloma (VAM) program has been working to accelerate the passage of legislation that would help US veterans who have developed myeloma due to the toxic exposures they faced while serving our country. Specific focus has been placed on

legislation that would help burn pit victims and make improvements to the current laws surrounding burn pit exposures.

Please visit veterans.myeloma.org to learn more about burn pits and to view the various opportunities to engage with your Member of Congress about this important legislation. MT

SUPPORT FOR VETERANS Get Your VAM Guide to VA Benefits

YOU ARE NOT ALONE. THE IMF IS HERE TO HELP.

The Veterans Against Myeloma (VAM) Guide to VA Benefits assembles information from various resources into one cohesive narrative specific to myeloma. This VAM Guide is intended to help Veterans with myeloma, their caregivers, and family members to navigate the VA claims process, myeloma service connections, understanding authoritative bodies, and VA claim appeals.

If you have trouble working with the VA or using this guide, please contact the IMF InfoLine at 800-452-CURE, Monday through Friday 0900–1630 Pacific Standard Time, to speak with our information specialists.

VETERANS.MYELOMA.ORG

TAKE ACTION – BECOME AN ADVOCATE TODAY

Anyone can become an advocate! The IMF will help guide you to advocate for critical health issues that affect the myeloma community. Whether you are a myeloma patient, caregiver, doctor, nurse, or friend, your opinion matters.

Go to advocacy.myeloma.org and help make a difference for the myeloma community!

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International Partners

4th Annual AMN Summit

By Daniel Navid IMF Senior Vice President, Global Affairs Moderator of the 2020 AMN Summit

The 4th Annual IMF Asian Myeloma Network (AMN) Summit was successfully held on October 17–18, 2020. Originally scheduled to be held in Singapore, the event was transformed into a virtual two-day gathering due to COVID-19.

Although it was not possible to hold an in-person Summit, government regulations throughout Asia did allow for the organization of AMN “studios” in several major cities, facilitating participation in the Summit by grouping together local AMN members in each location. This was arranged with the hub of the Summit in Bangkok and with satellite studios in Beijing, Shanghai, Seoul, and Singapore. Additional AMN members and industry observers also joined online from across China, Hong Kong, Taiwan, Japan, Korea, Malaysia, Singapore, and Thailand. Dr. Brian G.M. Durie and IMF staff joined the Summit from the IMF headquarters in Los Angeles. Myeloma experts Drs. S. Vincent Rajkumar and Tom Martin also joined from the United States. European myeloma experts Drs. Jean Luc Harousseau, Alberto Orfao, and Stephen Harding provided video-recorded contributions.

The AMN Summit is the main annual opportunity for the gathering of the leading myeloma specialists in Asia. Information is shared on the latest developments in myeloma diagnosis and treatment, and discussions are held in workshop settings to consider priorities for action in the coming year.

On the first day of the Summit, four main themes were considered: Frontline Therapy, Minimal Residual Disease (MRD), Immune Therapies, and Relapsed Myeloma. A global perspective

on each topic was provided in order by Dr. Rajkumar, Dr. Orfao, Dr. Martin, and Dr. Harousseau. For each topic, this was followed by an Asian perspective, contributed in order by Dr. Wee Joo Chng (Singapore), Dr. Wenming Chen and Dr. Juan Du (China), and Dr. Kihyun Kim (South Korea). After the presentations for each topic, panel discussions with questions and answers from AMN members ensued.

The second day of the Summit was kicked off with reports from various AMN Committees: • Virtual tissue bank (led by Dr. Chng and Dr. JH Lee of Korea) • High-risk myeloma treatment (led by Dr. Chim of Hong Kong and Dr. Huang of Taiwan) • Establishing an AMN MRD sub-committee (led by Dr. Chuncharunee of Thailand and Dr. Chen) • CAR T-Cell clinical trials in Asia (led by Dr. Du and Dr. Martin) • Asian patient support (led by Dr. Tan of Singapore and Dr. Shimizu of Japan) AMN members agreed on the following: • To proceed with the creation of the tissue bank, beginning with the participation of about a dozen AMN centers, • To prepare clinical trial proposals for high-risk myeloma patients, • To create an MRD program, including training for AMN centers, • To pursue CAR T-cell and other immune therapy clinical trial projects, • To move ahead with a patient support program in each AMN country and region, and • To prepare for a regional patient forum in conjunction with the 5th annual AMN Summit in 2021.

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Convenes Across Asia Also on the second day of the Summit, an update was provided

by Dr. Chng on several ongoing AMN clinical trials, along with a discussion about future initiatives.

This was followed with a review of algorithms for the treatment of myeloma, featuring a global overview provided by Dr. Rajkumar and an Asian perspective from Dr. Tan. It was agreed that the AMN treatment guidelines for Asia should be kept up-to-date on the IMF website.

The final session of the AMN Summit was chaired by Dr. Durie and Dr. Rajkumar and concerned strategies for disease management. This was especially lively, and the guidance provided by the global IMF experts was much appreciated by the AMN members in attendance.

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Partnership support for the 2020 AMN Summit was provided by Celgene/Bristol Myers Squibb and Sanofi Genzyme (Platinum sponsors); Amgen Oncology, Binding Site, and Janssen (Gold sponsors); Abbvie and Takeda Oncology (Silver sponsors); and Beigene, Takeda China, and Xian Janssen Pharmaceutical Ltd (sponsors of the China studios).

In closing the session, the IMF secretariat thanked all participants and partners, and announced that the 5th annual AMN Summit will be held in Hong Kong on October 22–24, 2021. MT Please email dnavid@myeloma.org for more information on current and upcoming IMF programs in Asia.

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Government regulations throughout Asia allowed for the organization of satellite AMN “studios” to facilitate member participation in the Summit: (1) The hub of the AMN Summit in Bangkok, (2) the studios in Beijing, (3) Shanghai, (4) Seoul, and (5) Singapore, with (6) additional AMN members, observers, and guests who joined the Summit remotely from China, Hong Kong, Taiwan, Japan, Korea, Malaysia, Singapore, Thailand, and the United States.

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International Partners

2020 Virtual GMAN Summit

Myeloma patient organizations from around the world meet in an online forum

By Jack Aiello GMAN member, myeloma patient, USA

Founded in 2013, the mission of the IMF Global Myeloma Action Network (GMAN) is to enhance the capabilities of patient advocacy groups around the world, increase myeloma awareness globally, and improving access to myeloma treatments. GMAN is a group of myeloma patient organizations from around the world who share best practices that address mutual areas of concern of the global myeloma community.

In a typical year, GMAN holds a Summit in June when the European Hematology Association (EHA) meeting is scheduled, and then a smaller meeting of member organizations is held in December at the time of the annual meeting of the American Society of Hematology (ASH). But nothing has been “typical” during the COVID-19 pandemic, and the 2020 GMAN Summit was held virtually over two days on September 23 and 24.

The 2020 GMAN Summit was attended by nearly 40 advocates representing myeloma organizations from 5 continents and 31 countries. The event was organized by Serdar Erdogan, IMF Director of Europe & Middle East, and co-founder of Living With Myeloma Initiative and Cancer Survivors Association in Turkey. This year’s GMAN Summit theme was “Myeloma ‘More On’ Digital”.

Our Summit began with reports by the recipients of the 2019 Susie Novis Durie Educational Grants. Representatives from South Korea (“Education Program Combined with Healing Walk”), Colombia (“Digital Awareness Program”), and Sweden

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(“Myeloma Toolkit”) presented their projects. Personally, I have been a member of GMAN since its founding, and these grant presentations were the best I’ve seen.

Next, the winners of the 2020 Susie Novis Durie Educational Grants were announced: Armenia (“Website, Translations, & Awareness Day”), Argentina (“Shuttle Transportation & Aware­ ness Campaign”), & Romania (“Medical Support for Patients”).

Over the course of the Summit, shared myeloma-specific updates were presented by Dr. Brian G.M. Durie (IMF Chairman) and Dr. Joseph Mikhael (IMF Chief Medical Office).

Highlights included: • The IMF Black Swan Research Initiative® and iStopMM (Iceland Screens Treats or Prevents Multiple Myeloma), • Future myeloma therapies beyond 2020, • COVID-19 and Myeloma, and • ASCO and EHA summaries that included information about: ° Blenrep® (belantamab mafodotin-blmf), the first antibodydrug conjugate (ADC) approved for myeloma by the United States Food and Drug Administration (FDA) in August 2020, ° CAR T-cell therapy in clinical trials showing improved efficacy and safety, and ° Very promising clinical trials with bispecific T-cell engager (BiTE), melflufen, CELMoDs (a new drug class in myeloma), and more.

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Dr. Brian G.M. Durie IMF Chairman

Martine Elias Myeloma Canada

Susie Durie IMF President & CEO

Serdar Erdoğan IMF Director of Europe and Middle East

Nella Combe Myeloma Australia

Yolima Méndez Camacho Fundación Colombiana de Leucemia y Linfoma

In addition, both days of the Summit saw presentations by and discussions with our event sponsors Amgen, BMS (Celgene), GSK, Sanofi, and Takeda, including product updates and drug costs, global patient surveys, efficacy of clinical trials versus effectiveness of real-world evidence (RWE), and clinical development strategy for myeloma.

Mimi Choon-Quinones (IMF Senior VP, Global Advocacy, Access, Policy & Research) presented a 5-year plan (2020-2025) for the Beyond Medicines’ Barriers program, with an emphasis on 1) Leave No One Behind, 2) Research Gaps, and 3) Demonstrating Value all with a goal of improving global access to care and therapy.

GMAN members also broke into virtual team meeting rooms focusing on Awareness, Access, and Advocacy to not only share experiences among countries, but also try to provide an idea for action in each of the three areas.

Lise-lott Eriksson Blodcancerförbundet, Sweden

Soren Dybdahl Dansk Myelomatose Forening, Denmark

examples of their own experiences dealing with stress while also managing many other tasks.

Presentations of Best Practices were provided by GMAN members from Australia, Denmark, and Singapore. Myeloma Australia developed nurse-led services and core programs for patients.

Denmark developed an awareness campaign targeting general practitioners, working closely with Danish Media, in order to improve earlier detection. The Asian Myeloma Network (AMN) provides physician education and patient support in order to improve the quality of myeloma care. Sharing these practices and more is what GMAN is all about!

While we missed catching up face-to-face, Serdar and other Summit participants provided a huge amount of information, education, and exciting programs. Personally, I can’t wait until our next GMAN meeting! MT

For any of us who are myeloma patients, we know how important our caregivers are. However, Susie Durie (IMF Founder) and Robin Tuohy (IMF VP, Support Groups) reminded us how important it is for caregivers to take care of themselves, providing many 800.452.CURE toll-free in USA and Canada

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Special Event

14th Annual Virtual

The IMF’s annual event goes virtual in 2020, featuring the “Everybody Loves Raymond” cast reunion!

Brad Garrett

Ray Romano

Patricia Heaton

Alex Meneses

Monica Horan

Phil Rosenthal

By Susie Durie IMF President & CEO

In October 2020, the International Myeloma Foundation (IMF) marked the 30-year anniversary since our founding in 1990.

Fourteen years ago, we began to celebrate each IMF anniversary by hosting the annual Comedy Celebration benefiting the Peter Boyle Research Fund. This event began one year after the passing of Peter Boyle, beloved actor, myeloma patient, and passionate supporter of the search for a cure.

Since then, thanks in great part to the efforts of Peter’s wife Loraine Alterman Boyle, who has served as Event Chair for each of the 14 annual events, the Comedy Celebration has become the IMF’s biggest night of the year, raising millions of dollars for innovative myeloma research of the IMF’s Black Swan Research Initiative® (BSRI®).

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Each Fall since 2007, the IMF has hosted the star-studded event in Los Angeles, featuring live music and performances by renowned comedians. This year, on October 23, the IMF held its 14th Annual Comedy Celebration in virtual format, and it was an event like no other! The special evening was hosted online by our friend Ray Romano, who shared the television screen with Peter Boyle on the hit sitcom “Everybody Loves Raymond” from 1996 to 2005. The two-hour virtual event honored Peter Boyle and reunited the cast for a reunion “table-read” to revisit their characters and re-create selected scenes on the 15th Anniversary of the sitcom’s on-air finale. Ray Romano was joined by Patricia Heaton, Brad Garrett, Monica Horan, and the sitcom’s Executive Producer and co-creator, Phil Rosenthal. info@myeloma.org

myeloma.org

Comedy Celebration Ray Romano launched the table-read by stressing the continuing importance of myeloma research, while referencing the reality of life during a pandemic. Romano also quipped that the table-read would be “nostalgic, scary, and fun. Kind of like my honeymoon!” It was definitely a night of fun and looking back at the scenes that made so many people laugh for almost a decade. Special guest Alex Meneses reprised her role of Stefania, the Italian vixen who tries to lure Robert Barone (Brad Garrett) from his fiancé played by Monica Horan. Many other celebrities made “visits” to pay tribute to Peter Boyle, including Alec Baldwin, Tom Brokaw, Peter Gallagher, Robert Klein, Michael McKean, Kevin Nealon, Annette O’Toole, Sherri Shepherd, and others.

Peter Boyle Research Fund, which supports the IMF’s groundbreaking Black Swan Research Initiative.

If you missed the intimate evening of sharing and laughter “live,” you can still tune into the video-on-demand (VOD) at IMF’s YouTube channel at youtube.com/user/IMFMyeloma and on the event website at comedy.myeloma.org. And, while the show may be over, there is still time to bid on exclu­ sive cast memorabilia, virtual celebrity meetups, and more.

Visit charitybuzz.com/IMF through December 3rd for hot ticket auc­tion items. MT

In addition, friends of the IMF “dropped in” to share personal stories of how their lives have been touched by myeloma, including comedian Forrest Shaw, myeloma patient Jen Curran, Alvin Ailey dancer Daphne Lee, and “Ologies” podcast host Alie Ward.

The IMF is grateful to Ray Romano and the talented performers, and to all our supporters and sponsors who contributed to making this year’s virtual event a success. Thousands of people from all over the world came together to watch the livestream of “Everybody Loves Raymond” and to help us raise funds for myeloma research. To date, the annual Comedy Celebration has raised more than $8 million for the

Loraine Alterman Boyle

Alec Baldwin

Annette O’Toole & Michael McKean

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Tom Brokaw

Peter Gallagher

Robert Klein

Kevin Nealon

Sherri Shepherd

Jen Curran

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Special Event COMEDY CELEBRATION – CONTINUED FROM PREVIOUS PAGE

14th Annual Virtual Comedy Celebration Sponsors Premiere

Patron

Partner

Dave & Kirsten Clark

Progress

Loraine Boyle & Family

The Katz Family Rod & Lynne Larson

Supporting

Yelak Biru & Loul Haugs

Ronda Gomez-Quinones

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Barbara Freitag Dr. & Mrs. Robert Kyle

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You’ve got questions...

He’s got the answers.

Recent topics:

#AskDrDurie

A weekly web series from the IMF

COVID-19 FAQ #23: As the pandemic continues, what does the future hold for myeloma patients?

COVID-19 FAQ #21: How should myeloma patients conduct their follow-up appointments?

What are bispecific antibodies?

COVID-19 FAQ #20: What is a bubble? And should myeloma patients exercise this practice?

COVID-19 FAQ #22: Have the safety recommendations changed for myeloma patients?

COVID-19 FAQ #19: Should myeloma patients visit the dentist during the pandemic?

Living Well with Myeloma

TELEHEALTH: How to Make the Most of Your Healthcare Provider Visit Live webinar recorded on November 12, 2020

WATCH THE REPLAY! MATT FAIMAN MD, MBA, FACP

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BETH FAIMAN

PhD, MSN, APRN-BC, AOCN, FAAN

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Replay the archived recording and listen to the experts at this informative webinar

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Shop for the Cause!

Whether you shop on Amazon for special occasions or for your daily needs, please designate the International Myeloma Foundation as your preferred charity. At no added cost to you, Amazon will donate to the IMF a percentage of your purchases if you access your account through smile.amazon.com – IT’S THAT SIMPLE! Same products. Same prices. Same service.

smile.amazon.com

Lynn K. Green, Ed.D. Senior Vice President, Philanthropy 334.332.0888 | lgreen@myeloma.org

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Printed in USA Š 2020 International Myeloma Foundation. All rights reserved.

International Myeloma Foundation 12650 Riverside Drive, Suite 206 North Hollywood, CA 91607-3421 USA myeloma.org 800.452.CURE Change Service Requested

Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

We’re Here for You!

Please visit myeloma.org for the latest information from the IMF. For news from our international partners, please visit these websites:

myeloma.org.au (Australia)

myelomacanada.ca (Canada)

800.452.CURE (toll-free in USA and Canada)

amen.org.il (Israel) 818.487.7455 (worldwide)

myeloma.gr.jp (Japan)

mielomabrasil.org (Latin America) myeloma.org