Myeloma Today a Publication of the International Myeloma Foundation

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 Martine Elias Dr. Robert A. Kyle Matthew Robinson Yelak Biru George T. Hayum Prof. Dr. Heinz Ludwig E. Michael D. Scott Prof. Dr. Mario Boccadoro Jason Katz Dr. Edith Mitchell Loraine Boyle Benson Klein Charles Newman Susie Durie Andrew Kuzneski, III Dr. S. Vincent Rajkumar

IMF Executive Team Chief Financial Officer & Senior Vice President, Senior Vice President, Senior Vice President, Chief Operating Officer Strategic Planning Clinical Education & Research Initiatives Global Affairs Jennifer Scarne Diane Moran Lisa Paik Daniel Navid [email protected] [email protected] [email protected] [email protected]

Chief Medical Officer Senior Vice President, Senior Vice President, Global Advocacy, Vice President, Dr. Joseph Mikhael Philanthropy Access, Policy & Research Marketing [email protected] Lynn K. Green, Ed.D. Mimi Choon-Quinones, PhD, MBA Peter Anton [email protected] [email protected] [email protected]

IMF Staff Inventory Control Manager Meeting Registration Assistant to Senior Director, Regional Director, Betty Arevalo & Guest Relations Member Events Support Groups [email protected] Abigail Guzman Karla Lemus Kelley Sidorowicz [email protected] [email protected] [email protected] Senior Director, Member Events Director, Senior Director, Donor Relations Suzanne Battaglia Regional Community Public Policy & Advocacy Sarah Solomon [email protected] Workshops Robin Levy Brenda Hawkes [email protected] [email protected] Regional Director, [email protected] Support Groups Senior Research Accounting & Nancy Bruno InfoLine Coordinator Project Coordinator Distribution [email protected] Paul Hewitt Amirah Limayo Brando Sordoni [email protected] [email protected] Director, Support Groups [email protected] & Regional Community Web Specialist Publication Design Assistant Workshops Kevin Huynh Jim Needham to the President Kelly Cox [email protected] [email protected] [email protected] Rafi Stephan Editor-in-Chief, [email protected] Director, Public Policy Publications Administrative Assistant, & Advocacy Marya Kazakova Meetings & Events Vice President, Danielle Doheny [email protected] Meghan O’Connor Support Groups [email protected] [email protected] Robin Tuohy Assistant Director, [email protected] Director, Member Events Director, Operations Global Myeloma Action Ilana Kenville Selma Plascencia [email protected] InfoLine Coordinator Network and European [email protected] Judy Webb & Middle Eastern Patient Programs InfoLine Coordinator Director, [email protected] Serdar Erdoğan Missy Klepetar Meetings & Events [email protected] [email protected] Annabel Reardon Donor Relations [email protected] Jonathan Weitz Donor Relations Manager, Marketing [email protected] Heather Fishman & Communications Database Analyst [email protected] Sapna Kumar Joy Riznikove [email protected] [email protected] Support Group Coordinator Accountant Web Producer Jon Fitzpatrick Phil Lange Miko Santos [email protected] [email protected] [email protected]

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

2 FALL 2020 [email protected] myeloma.org A Message from the IMF President & CEO

Dear Reader, It’s hard to believe that in October 2020, the IMF celebrated are now more than 150 local support groups in the US, with our 30th anniversary! many more groups worldwide. In 1989, I was engaged to Brian D. Novis when he underwent a In 2000, the IMF initiated the annual Robert A. Kyle Lifetime routine blood test that led to his myeloma diagnosis. Neither Achievement Award, which recognizes outstanding contri- of us had ever heard of it before. Not long after, together with butions in the field of myeloma. In 2002, I testified before the Dr. Brian G.M. Durie, we brainstormed about what would US Senate Appropriations Subcommittee on Labor, Health become the International Myeloma Foundation. The IMF and Human Services about the need to fund cancer research was founded in 1990, dedicated to improving the quality of at the National Cancer Institute. life of myeloma patients while working toward prevention and a cure. 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 IMF International Myeloma Working Group Summit, 2019 Seminars was born. The first seminar was held in 1993 In 2003, the IMF formed a Scientific Advisory Board, with in Los Angeles. 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 IMF Support Group Leaders Summit, 2019 to do the very best for myeloma patients everywhere. The outcomes have dramatically improved and they will In 1994, the IMF began to fund and foster myeloma research continue to improve more in the coming 5 to 10 years.” through the Brian D. Novis Research Grant program. In 1999, – Dr. Brian G.M. Durie, IMF Chairman the IMF held its first Support Group Leaders Summit – there (continues on next page)

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

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 3 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 Since 2012, the IMF’s Black Swan Research Initiative® (BSRI®) When my dear friend Loraine Alterman Boyle lost her hus- has been the IMF’s signature project to develop the first band, revered comic actor Peter Boyle to myeloma in 2006, definitive cure for myeloma, launching the Iceland-based she transformed her grief into healing by chairing the IMF’s iStopMM project in 2016. This project is tracking approx- Celebrating Peter Boyle benefit, later renamed the Annual imately 120,000 adults in Iceland for the earliest signs of Comedy Celebration (turn to page 18 to read about this year’s myeloma. And iStopMM is only one of 40 ongoing projects virtual event). 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!” IMF Global Myeloma Action Network Summit, 2019 – Dr. Robert A. Kyle, Mayo Clinic, Rochester, Minnesota The past decade has been remarkable for the IMF, fighting myeloma on all fronts and around the world! The IMWG I am proud to say that 30 years after its founding, the IMF continues to chart the future of myeloma treatment and care, stands at the forefront of myeloma research, and patients are and many patients are living longer and are experiencing always at the heart of all our work. It used to be that a cure improved quality of life. for myeloma was a dream somewhere far, far in the distance. In 2011, the IMF established the first-of-its-kind Asian Myeloma But as I look forward now, I can see it. And I hope you can too. Network (AMN), comprised of myeloma experts from China, Warm regards, 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 Susie Durie, IMF President & CEO IMF established the Global Myeloma Action Network (GMAN), a network of patient advocates that works to improve the lives of myeloma patients worldwide.

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 IMF Asian Myeloma Network Summit, 2019 are among past recipients of the award.

4 FALL 2020 [email protected] myeloma.org Scientific & Clinical The 11th Annual IMWG Summit – A Great Success!

By Dr. Brian G.M. Durie Keynote Address IMF Chairman of the Board Prof. Stefánsson presented a brilliant lecture on population The IMF hosted the 11th Annual Summit of the International genetics based on his more than 20 years of work at deCODE. He Myeloma Working Group (IMWG) in virtual fashion on helped the audience understand the origin and impact of indi- August 25–26, 2020. Although the IMWG Summit was held vidual gene mutations on disease predisposition. He empha- online, it continued the tradition of focusing on the latest sized how clonal expansion of cells with particular mutations is myeloma research from experts around the world. required to have an effect in the body. An innovative platform allowed 60 members of the IMWG to There has been only a little research so far on IgM-type MGUS. participate, using a wall of interactive monitors to communi- To help reveal the genetic basis for MGUS and plasma cell dis- cate with speakers and panelists. It was possible to have 2-, 3- orders, we now await with great anticipation the ongoing work and 4-way conversations and invite commentary from those by Prof. Sigurdur Kristinsson of the IMF Black Swan Research on the wall. Initiative-supported iStopMM project. “It felt like we were all sitting in the same room,” noted Dr. Shaji Plenary Lectures Kumar (Mayo Clinic, Rochester, Minnesota). Additional com- Frontline therapy ments arrived via chat box from more than 100 additional par- The key question in the session ticipants and observers. on frontline therapy, chaired Although everyone missed the camaraderie, the abil- by Prof. Pieter Sonneveld (Erasmus MC Cancer Center, ity to chat personally, and the sharing of stories, the The Netherlands), was whether traditional structure of the Summit was retained: or not we are heading toward a Keynote Speech, this year by Prof. Kári Stefánsson (Founder & the use of a four-drug combi- CEO, deCODE genetics, Reykjavik, Iceland); four plenary lec- nation – a “quadruplet” – in the ture topics; and four Working Group Committee reports to the frontline setting. The answer IMWG membership. delivered by this panel was a There were many takeaways from the two-day event. decisive yes. Dr. Brian G.M. Durie (continues on next page)

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 5 Scientific & Clinical

2020 IMWG SUMMIT – CONTINUED FROM PAGE 5

However, many issues remain, not least of which are access and therapies, bispecific antibodies, and the antibody drug conju- costs. After presentations by Dr. S. Vincent Rajkumar (Mayo Clinic, gate (ADC) Blenrep. Rochester) on triplet combinations, and Dr. Paul Richardson CAR T-cell therapies, it was noted, can be an attractive option for (Dana-Farber Cancer Institute, Boston, Massachusetts) on patients with high-risk disease in whom achieving deep MRD- quadruplets, it was clear that further studies are needed to negative response can be of particular benefit. There is also the show decisively that a combination of, for example, Darzalex® notion that CAR T-cell therapies in particular may end up replac- (D) + Velcade® (V) + Revlimid® (R) + dexamethasone (d) pro- ing traditional ASCT (autologous stem-cell transplant). Patient duces better survival versus the triplet of VRd alone. This discus- preference will continue to be an important part of all types of sion linked directly to the next topic, minimal residual disease management discussions. (MRD) assessment. On the research side, the establishment of a registry for patients Minimal Residual Disease (MRD) assessment treated with anti-BCMA therapies, as well as a virtual tissue bank, The MRD session was chaired by Prof. Jesús San Miguel were enthusiastically discussed. (University of Navarra, Spain), and comprehensively covered the following: Relapse treatments • The role of MRD testing as an endpoint (Dr. Nikhil Munshi, The highlight of this session, chaired by Dr. Joseph Mikhael Dana-Farber Cancer Institute), (Translational Genomics Research Institute, Phoenix, Arizona), was the review of the “New IMWG Guidelines for RRMM,” pre- • The MRD tests currently available (Dr. Bruno Paiva, sented by Dr. Philippe Moreau (University Hospital Nantes, University of Navarra, Spain), France). This has been a challenging project, but the final manu- • Whether or not MRD can be a surrogate indicator script is ready for submission and publication. Important discus- of potential cure (Dr. María-Victoria Mateos, University sions emerged about what is recommended and what is truly of Navarra, Spain). feasible in many parts of the world. Many combinations, such MRD is an essential endpoint that indicates, early on, the poten- as daratumumab + pomalidomide + dexamethasone (DPd), are tial for very long survival. We all eagerly await the approval of not reimbursed nor actually available. As a result, less effective MRD as a surrogate endpoint by the FDA. The data are being regimens must be substituted. This is really disheartening for submitted by the i2TEAMM, a group of international myeloma doctors and unfair for patients. Broad solutions remain elusive. researchers working to validate MRD testing as a surrogate end- Working Group Committees point that is superior to traditional endpoints, such as CR (complete remission) or even sCR (stringent complete response) in Highlights of the Summit Working Group reports included: myeloma clinical trials. There is true optimism about approval in • A summary of the upcoming publication of guidelines for the coming months. use of mass spectrometry, presented by Dr. David Murray (Mayo Clinic, Rochester). This very sensitive blood-test Immune therapies technology will revolutionize both diagnostic testing and This session, chaired by Dr. Thomas Martin (University of response monitoring in the coming years. California, San Francisco) and Dr. Yi Lin (Mayo Clinic, Rochester), examined the questions that garnered the most interest at • The new criteria for identification of high-risk smoldering the IMWG Summit: What will be the role of CAR T-cells? And myeloma (the 2/20/20 system), presented by Drs. Kumar and Mateos. what about bispecific antibodies? Dr. Saad Usmani (Atrium Health, Charlotte, North Carolina) described these as “the poor • Planned projects and studies by the Immune Therapy man’s CAR T.” Committee led by Drs. Martin and Lin, which received enthusiastic endorsement. The fact that Blenrep® (belantamab mafodotin) was just • The many accomplishments and upcoming plans by the Bone approved by the FDA and, on the second day of the Summit, by Committee led by Dr. Evangelos Terpos (University of Athens, the European Medicines Agency (EMA) was a focus of attention. Greece) and Dr. Jens Hillengass (Roswell Park, New York). There is great enthusiasm for using this new, anti-BCMA agent as a potent immune therapy in the relapsed setting. It is read- 2020 IMWG Awards ily available “off the shelf” and has an easy, once-every-three- It was a disappointment that in-person award presentations weeks administration schedule. were not possible this year. However, Prof. Thierry Facon Overall, the sentiment was that each of the new immune ther- (University of Lille, France) was announced as the recipient apies will have a niche and will move earlier and earlier in the of the 2020 Robert A. Kyle Lifetime Achievement Award and treatment paradigm to take advantage of the unprecedented, Prof. Wee Joo Chng (Singapore University) received the 2020 very deep responses that are being achieved with CAR T-cell Brian G.M. Durie Outstanding Achievement Award. In lieu of

6 FALL 2020 [email protected] myeloma.org 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 Prof. Wee Joo Chng Prof. Thierry Facon Dr. Robert A. Kyle 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! Dr. Yi Lin Dr. Thomas Martin Dr. María-Victoria Mateos 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). Dr. Joseph Mikhael Dr. Philippe Moreau Dr. Nikhil Munshi • 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 Dr. Bruno Paiva Dr. S. Vincent Rajkumar Dr. Paul Richardson 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. Prof. Jesús San Miguel Prof. Pieter Sonneveld Prof. Kári Stefánsson 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. Susie Durie

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 7 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® confirmed disease progression, unacceptable toxicity, (bortezomib) has resulted in a need for Revlimid-free and withdrawal of consent, or death. The CANDOR study – Velcade-free novel therapies for patients with relapsed NCT03158688 – is registered with clinicaltrials.gov and is and/or refractory multiple myeloma (RRMM). The combina- active but not recruiting. tion therapy of Kyprolis® (carfilzomib) + dexamethasone (Kd) has demonstrated efficacy and safety in the RRMM patient The primary endpoint is progression-free survival (PFS), population. The CANDOR clinical trial is comparing the effi- defined as the time from randomization to the earlier of cacy and safety of Kd combination therapy to the experi- either disease progression or death (due to any cause). mental therapy of Kyprolis + Darzalex® (daratumumab) + Participants are evaluated for disease response and pro- dexamethasone (KDd or Dara-Kd) in patients with RRMM. gression according to the International Myeloma Working Group (IMWG) Uniform Response Criteria (URC). CANDOR is a phase III, multicenter, open-label, randomized study in participants who have received 1 to 3 prior thera- After median follow-up of approximately 17 months, median pies. This study is assessing 466 patients from 102 sites in PFS was not reached in the KDd arm versus 15.8 months in North America, Europe, Asia, and Australia. Study patients the Kd arm, demonstrating prolonged PFS in KDd versus Kd receive the treatment for a maximum of 4 years or until 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 while employing two other agents that have not previously myeloma patients as it demonstrates the benefit of combin- been used. Furthermore, this is particularly useful in high- ing two potent drugs in early relapse. Since most myeloma er-risk myeloma patients in whom we would want to use a patients who are on a maintenance therapy are taking lena- drug like carfilzomib. CANDOR is an important study, and lidomide, it is very attractive to consider an approach that we will continue to share information about it with readers excludes that class of drug – immunomodulatory agents – of Myeloma Today as the data continues to mature. MT

8 FALL 2020 [email protected] myeloma.org Education & Awareness

#WHEREISDRJOEDiversity, 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 3. Survival improvements in myeloma have not been as devastating year. My sincere hope is that despite all of these chal- pronounced in African Americans – for every 1.3 years lenges, we come together more fully in our fight against myeloma. of life gained for Whites, only 0.8 years of life are gained Many of the recent events have caused us all – and should cause for African Americans, us all – to reflect on our personal values. Critical issues of diversity, 4. African Americans are younger at diagnosis by equity, and inclusion have indeed been brought to the forefront about 5 years, and it has become apparent that they affect all avenues of our life. 5. There is a longer time to diagnosis from the onset Although there is no perfect definition of these, I suggest the of symptoms, following: 6. Africans Americans are less likely to receive ¡ Equity means to guarantee fair treatment, access, TRIPLET therapies, opportunity, and advancement for all while striving to 7. African Americans are less likely to receive stem identify and eliminate barriers that have prevented the cell transplants, full participation of some groups. 8. Although African Americans comprise 20% of ¡ Valuing diversity means that we recognize and respect all myeloma patients, they represent only 5-6% of everyone’s unique qualities and attributes. patients on clinical trials, ¡ Inclusion means that all individuals feel respected, accepted, and valued. 9. There are biologic differences in African Americans with myeloma that may lead to lower risk disease, As a person of color, I can absolutely relate to challenging situa- 10. When African Americans receive equal access care, tions of prejudice, bias (conscious and unconscious), and racism. their survival outcomes are equal, and at times, My genuine hope is that all of us can be committed to equity, better than Whites. on both a personal and professional level, and value the diversity that makes us so much stronger together. This is both a mindset These facts cause us to take action to overcome these dispari- and a deliberate practice – not only to “accept” our differences ties. The core vision of the IMF’s African American Initiative is to but truly celebrate and embrace them. improve the short and long-term outcomes of African American At the IMF we are deeply committed to ALL myeloma patients, patients through engagement of the community, education of independent of background. We have been specifically ded- healthcare providers, and support of patients. To achieve this icated in our four pillars of activity of research, education, sup- vision we have enacted several activities that include deeply port, and advocacy to vulnerable populations. Indeed, we have engaging and collaborating with the medical and non-medical been engaged in activities over the last 30 years in multiple ways African American community to: including our more than 150 support groups, our Global Myeloma ¡ Raise awareness of the condition, Action Network, our Asian Myeloma Network, our presence and ¡ Educate about common signs and symptoms of the disease, collaboration with the African American and Hispanic communities, and many more. You can learn more at our diversity website ¡ Provide resources at the IMF and local centers for myeloma.org/diversity/diversity-inclusion. myeloma care, ¡ Support patients, their caregivers, and their families in Furthermore, we have increased our efforts in many arenas. We their communities. have created a Diversity Inclusion Team to oversee our diversity activities. We have initiatives in motion to address the disparities Furthermore, we are engaging in an education campaign to pri- in myeloma, working to support all patients as we seek a cure. mary care providers to emphasize the need for early and accu- rate diagnosis of myeloma in all patients, but in particular African One of the major initiatives is our African American Initiative. Sadly, the statistics are clear that this population is particularly American patients – as it is clear they have a longer lag between vulnerable. A few key facts include: symptoms and diagnosis. 1. Myeloma is the most common hematologic cancer We have plans for many cities and communities to be involved, in African Americans, and I truly believe we can close some of the gap in access to 2. MGUS and myeloma is TWICE as common in care, engagement in the myeloma community, and even in African Americans, survival outcomes. MT

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 9 Nurse Leadership Board

Kevin Brigle, PhD, NP Massey Cancer Center Virginia Commonwealth University The NLB Convenes a Donna D. Catamero, ANP-BC, OCN, CCRC Myeloma Translational Research Virtual 2020 Annual Meeting Mount Sinai Health System By Diane Moran Kathleen Colson, RN, BSN, BS IMF Senior Vice President, Strategic Planning Dana-Farber Cancer Institute The IMF founded the Nurse Leadership Board® presented a poster on the Development of a Deborah Doss, RN, OCN Dana-Farber Cancer Institute (NLB) in 2006 as a professional partnership to Patient Decision Aid, another significant accom- represent nurse experts caring for myeloma plishment. During the past year, NLB nurses pub- Beth Faiman, PhD, RN, MSN, APN-BC, AOCN®, FAAN patients. Comprised of nurses from leading lished several articles on topics of importance Cleveland Clinic Taussig Cancer Institute myeloma institutions in the US and abroad, the to patients with myeloma. Additionally, NLB Elizabeth Finley-Oliver, NLB is improving the nursing care and self-care nurses continued to directly educate myeloma MSN, ARNP, AGNP-BC of patients with myeloma via consensus pub- patients via IMF Patient & Family Seminars, H. Lee Moffitt Cancer Center lications, symposia, multimedia, and research. & Research Institute Regional Community Workshops, Living Well NLB members engage in year-round activities in Charise Gleason, MSN, NP-C, AOCNP Teleconferences, and Support Group meetings Winship Cancer Institute patient education, nurse education, and nurse- and related events. The paramount accomplish- of Emory University led research projects. Members also meet annu- ment for the year is the NLB’s Myeloma University Michaela Hillengass, RN* ally to report on past and ongoing activities, for Nurses, which is in production and will launch Roswell Park Comprehensive Cancer Center review goals and objectives, and plan patient in 2021 to provide essential nurse education in *German certified care initiatives and related projects. module format. This project has become even Patricia A. Mangan, RN, MSN, APRN-BC The 16th annual NLB meeting was held online more important now that in-person contact is Abramson Cancer Center over the course of three days, September 25–27, limited due to COVID-19. University of Pennsylvania 2020. The event was guided by Beth Faiman Ann McNeill, RN, MSN, APN (Chair) and Kimberly Noonan (Co-Chair), and NLB Priorities John Theurer Cancer Center Hackensack University Medical Center included the participation of 16 additional NLB Robin Tuohy (IMF VP, Support Groups) contrib- members. The meeting was opened by Diane uted the patient and caregiver perspective when Teresa S. Miceli, RN, BSN, OCN William von Liebig Transplant Center Moran (IMF Sr. VP, Strategic Planning), who she shared her family’s 20-year journey with Mayo Clinic – Rochester warmly welcomed all the attendees and thanked myeloma after her husband’s diagnosis. Robin Kimberly Noonan, the industry sponsors who made the event pos- became a caregiver, and she and her husband DNP, ANP-BC, AOCN sible. Diane congratulated Mary Steinbach and became leaders of a myeloma support group. Dana-Farber Cancer Institute Michaela Hillengass, who are now full members Robin served as the representative of all the Amy E. Pierre, RN, MSN, ANP-BC of the NLB, and welcomed back Donna Catamero. other myeloma patients and caregivers who are Memorial Sloan Kettering Cancer Center at the heart of the NLB mission. Tiffany Richards, Next, Diane reviewed the history of the IMF upon PhD, ANP-BC, AOCNP® its 30th anniversary. From its humble beginning MD Anderson Cancer Center Next, Beth Faiman reported on the results of in 1990, the IMF has grown into an organization a pre-meeting survey, and the NLB members Sandra I. Rome, RN, MN, AOCN, CNS with global reach that remains dedicated to Cedars-Sinai Medical Center aligned on the projects that had the highest improving the quality of life of myeloma patients Mary Steinbach, DNP, APRN priority: tip sheets for patients and caregivers, Huntsman Cancer Institute while working toward prevention and a cure. patient tools, a patient care plan, videos, and University of Utah Diane also celebrated the 14-year history of the patient cases for nurse education. Joseph D. Tariman, NLB, which has educated thousands of nurses PhD, RN, ANP-BC, FAAN and affected hundreds of thousands of patients Amy Pierre presented data that show outcome College of Science and Health and their caregivers. disparities faced by African American patients De Paul University with myeloma. Although African Americans tend Daniel Verina, DNP, RN, ACNP-BC NLB Year in Review to have higher rates of myeloma, it tends to be Mount Sinai Medical Center Kimberly Noonan spoke about the NLB’s accom- lower-risk disease, providing opportunities for International Affiliates plishments over the past year, including the good outcomes with appropriate treatment. Tracy King, RN, MN However, African American myeloma patients Institute of Hematology successful symposium held virtually at the 2020 Royal Prince Alfred Hospital Oncology Nursing Society (ONS) Congress for tend to have greater treatment delays at every Cindy Manchulenko, RN, BN, MSN nurse attendees, which continues to be available step from diagnosis onward, as well as reduced BC Cancer Center online for CNE credit. At the 2019 International rates of stem cell transplantation. Plans for Myeloma Workshop (IMW), NLB members addressing disparities were discussed.

10 FALL 2020 [email protected] myeloma.org Michaela Hillengass

Charise Gleason

Tiffany Richards

The Doctors sufficient number of transplants have been completed. Mary plans to publish the results of her experience. Currently there is Dr. Joseph Mikhael (IMF Chief Medical Officer) provided a glimpse of the future of myeloma therapy by addressing the no nursing school in Abu Dhabi, and this may be an opportunity evolving landscape and new drugs. The myeloma field has for future collaboration with the NLB. undergone a huge change over the last decade, and the next decade will likely see even more advances. NLB Working Groups Dr. Matt Faiman (MD, MBA, FACP) shared tips and clinical pearls In the course of the three-day virtual meeting, there were multi- from his years of experience with telehealth. He emphasized that ple times when NLB nurses worked in smaller groups on specific patient preferences are evolving and, therefore, providers must projects and tasks. During one such session, the nurses created adjust the delivery of healthcare. Telemedicine has changed or updated patient tip sheets on a wide variety of important from the introduction of the telephone in the late 1800s, and topics: infection, deep-vein thrombosis, pain management, new entrants into the healthcare space are disrupting health- fatigue, corticosteroids, and care coordination. The nurses also care delivery. Furthermore, the current pandemic has increased worked on a patient care plan and a patient tool on telehealth, interest in virtual visits, with the Baby Boomer generation using and began developing patient cases that can be used within a telehealth even more than Millennials in some categories. number of teaching formats. The patient education slide deck Although there is increasing acceptance of telehealth, barriers was reviewed, and patient education video clips on targeted do exist. For information about the informative Telehealth webinar from the IMF, please see page 21. topics entered the planning stage of development.

Dr. Brian G.M. Durie presented an update on the IMF’s Black Much was accomplished in the course of the three days of Swan Research Initiative® and reviewed the recent International well-structured virtual sessions. Although pivoting from an Myeloma Working Group (IMWG) Summit (see page 5 for more in-person annual meeting to an online format required some information). Dr. Durie also discussed COVID-19, from the spread adjustments, the level of productivity and the supportive cama- of the virus globally from the Wuhan region of China, to the raderie among the nurses didn’t skip a beat. The important work Lombardy region in Italy, and more. Much is unknown about of the NLB continues. MT the COVID-19 infection, and it remains an important concern for patients with myeloma. An Asian study suggests that the death Please visit nlb.myeloma.org to learn more about the work of the rate for patients with myeloma infected with COVID-19 may be IMF’s Nurse Leadership Board higher than for age/comorbidity matched controls (30% vs 24%). 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 818.487.7455 worldwide FALL 2020 11 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 If generics drugs are not available, this could pose a large prob- assistance programs to help them afford their medications, but lem for people with myeloma. The IMF has advocated to ensure this could be in jeopardy for some people. We wanted to make that these practices can be used only in cases where generics myeloma patients and advocates aware of accumulator adjust- exist, but presently this is not the case with all programs. ment programs, a disturbing trend in insurance benefit design that could soon have an impact on patients’ access more widely. 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 a copay accumulator program? What is IMF doing to stop this? When patients receive help from manufacturer assistance programs, typically they count towards their deductible and Since 2018, the IMF has been working hard to combat this issue. patients are able to continuously afford their medications with A coalition of patient advocacy groups quickly formed with the little interruption. Copay accumulator programs prohibit man- goal of helping educate policy makers and come up with viable ufacturer assistance for these medications to count towards a solutions to the problem. The coalition focuses on educating patient’s deductible or out-of-pocket maximum. Patients who and proposing solutions to both state and federal policy makers. have reached their deductibles in the past with the help of The coalition has already produced success at the state level copay assistance provided by a pharmaceutical company could with the passage of state bills. The group has also worked with now be faced with paying large bills for their medications in lawmakers in attempt to delay the changes in the 2021 NBPP order to meet their deductibles if their insurance plan allows for the usage of copay accumulator programs. rule, and we have provided endorsement of the Preserving Patient Savings on Drug Costs Act. We have prepared advo- To make matters worse, it can be extremely difficult to know if cacy action alerts so you can get involved, too. You can your plan has a copay accumulator program. These programs quickly send a prepared message to your legislators by visiting often go by other names depending on the insurer imple- advocacy.myeloma.org and going to the federal action center. If menting them and can be quite deceptive. Sadly, many people this issue has an impact on you, we hope you will join is in taking find out their plans have copay accumulator programs when this and further actions. it is too late, typically mid-year while at their pharmacy to fill a prescription. While the situation is disheartening, the IMF is prepared to fight for patients. It is imperative for us to have stories to Who could these programs impact? share with policy makers. Already, we’ve had several patients Copay accumulator programs would specifically affect people reach out to us because they are impacted by copay accu- taking specialty medications who receive copay assistance from mulators. We are thankful that they have shared their stories. the drug’s manufacturer. Traditionally, copay assistance would If you have been impacted by these programs and are will- help these patients reach their deductible. However, copay ing to share your personal experiences, please email us as accumulator programs change this. [email protected]. MT Insurers justify the usage of these programs because they If you would like to follow the IMF Advocacy team’s efforts, or are believe it will push patients onto generic drugs and put pres- interested in getting involved and being guided through the process sure on drug companies to reduce costs. However, many of the of engaging with Congress, please visit advocacy.myeloma.org or drugs potentially impacted do not have generic equivalents. sign up for the IMF Advocacy Newsletter at subscribe.myeloma.org

12 FALL 2020 [email protected] myeloma.org VAM Focuses Efforts on Burn Pit Related Legislation The International Myeloma Foundation’s Veterans Against legislation that would help burn pit victims and make improve- Myeloma (VAM) program has been working to accelerate the ments to the current laws surrounding burn pit exposures. passage of legislation that would help US veterans who have Please visit veterans.myeloma.org to learn more about burn developed myeloma due to the toxic exposures they faced pits and to view the various opportunities to engage with your while serving our country. Specific focus has been placed on Member of Congress about this important legislation. MT

The Veterans Against Myeloma (VAM) Guide to SUPPORT VA Beneﬁts assembles information from various FOR VETERANS resources into one cohesive narrative speciﬁc to myeloma. This VAM Guide is intended to help Get Your VAM Guide Veterans with myeloma, their caregivers, and to VA Benefits 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 YOU ARE NOT ALONE. information specialists. THE IMF IS HERE TO HELP. 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!

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 13 International Partners 4th Annual AMN Summit Convenes Across Asia By Daniel Navid on each topic was provided in order by Dr. Rajkumar, Dr. Orfao, IMF Senior Vice President, Global Affairs Dr. Martin, and Dr. Harousseau. For each topic, this was followed Moderator of the 2020 AMN Summit by an Asian perspective, contributed in order by Dr. Wee Joo The 4th Annual IMF Asian Myeloma Network (AMN) Summit was Chng (Singapore), Dr. Wenming Chen and Dr. Juan Du (China), successfully held on October 17–18, 2020. Originally scheduled and Dr. Kihyun Kim (South Korea). After the presentations for to be held in Singapore, the event was transformed into a virtual each topic, panel discussions with questions and answers from two-day gathering due to COVID-19. AMN members ensued. Although it was not possible to hold an in-person Summit, gov- The second day of the Summit was kicked off with reports from ernment regulations throughout Asia did allow for the orga- various AMN Committees: nization of AMN “studios” in several major cities, facilitating • Virtual tissue bank (led by Dr. Chng and Dr. JH Lee of Korea) participation in the Summit by grouping together local AMN • High-risk myeloma treatment (led by Dr. Chim of Hong Kong members in each location. This was arranged with the hub of and Dr. Huang of Taiwan) the Summit in Bangkok and with satellite studios in Beijing, • Establishing an AMN MRD sub-committee (led by Shanghai, Seoul, and Singapore. Additional AMN members Dr. Chuncharunee of Thailand and Dr. Chen) and industry observers also joined online from across China, • CAR T-Cell clinical trials in Asia (led by Dr. Du and Dr. Martin) Hong Kong, Taiwan, Japan, Korea, Malaysia, Singapore, and • Asian patient support (led by Dr. Tan of Singapore and Thailand. Dr. Brian G.M. Durie and IMF staff joined the Summit Dr. Shimizu of Japan) from the IMF headquarters in Los Angeles. Myeloma experts Drs. S. Vincent Rajkumar and Tom Martin also joined from AMN members agreed on the following: the United States. European myeloma experts Drs. Jean Luc • To proceed with the creation of the tissue bank, beginning Harousseau, Alberto Orfao, and Stephen Harding provided vid- with the participation of about a dozen AMN centers, eo-recorded contributions. • To prepare clinical trial proposals for high-risk myeloma patients, The AMN Summit is the main annual opportunity for the gath- • To create an MRD program, including training for ering of the leading myeloma specialists in Asia. Information is AMN centers, shared on the latest developments in myeloma diagnosis and • To pursue CAR T-cell and other immune therapy treatment, and discussions are held in workshop settings to con- clinical trial projects, sider priorities for action in the coming year. • To move ahead with a patient support program in On the first day of the Summit, four main themes were con- each AMN country and region, and sidered: Frontline Therapy, Minimal Residual Disease (MRD), • To prepare for a regional patient forum in conjunction Immune Therapies, and Relapsed Myeloma. A global perspective with the 5th annual AMN Summit in 2021.

14 FALL 2020 [email protected] myeloma.org 4th Annual AMN Summit Convenes Across Asia Also on the second day of the Summit, an update was provided Partnership support for the 2020 AMN Summit was provided by by Dr. Chng on several ongoing AMN clinical trials, along with a Celgene/Bristol Myers Squibb and Sanofi Genzyme (Platinum discussion about future initiatives. sponsors); Amgen Oncology, Binding Site, and Janssen (Gold sponsors); Abbvie and Takeda Oncology (Silver sponsors); and This was followed with a review of algorithms for the treat- Beigene, Takeda China, and Xian Janssen Pharmaceutical Ltd ment of myeloma, featuring a global overview provided by (sponsors of the China studios). Dr. Rajkumar and an Asian perspective from Dr. Tan. It was agreed that the AMN treatment guidelines for Asia should be In closing the session, the IMF secretariat thanked all partic- kept up-to-date on the IMF website. ipants and partners, and announced that the 5th annual AMN Summit will be held in Hong Kong on October 22–24, 2021. MT The final session of the AMN Summit was chaired by Dr. Durie and Dr. Rajkumar and concerned strategies for disease man- Please email [email protected] for more information on agement. This was especially lively, and the guidance provided current and upcoming IMF programs in Asia. by the global IMF experts was much appreciated by the AMN members in attendance.

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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.

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 15 International Partners 2020 Virtual GMAN Summit Myeloma patient organizations from around the world meet in an online forum By Jack Aiello (“Myeloma Toolkit”) presented their projects. Personally, I have GMAN member, myeloma patient, USA been a member of GMAN since its founding, and these grant pre- Founded in 2013, the mission of the IMF Global Myeloma Action sentations were the best I’ve seen. Network (GMAN) is to enhance the capabilities of patient advo- Next, the winners of the 2020 Susie Novis Durie Educational cacy groups around the world, increase myeloma awareness Grants were announced: Armenia (“Website, Translations, & globally, and improving access to myeloma treatments. GMAN is Awareness Day”), Argentina (“Shuttle Transportation & Aware a group of myeloma patient organizations from around the world ness Campaign”), & Romania (“Medical Support for Patients”). who share best practices that address mutual areas of concern of the global myeloma community. Over the course of the Summit, shared myeloma-specific updates were presented by Dr. Brian G.M. Durie (IMF Chairman) and In a typical year, GMAN holds a Summit in June when the Dr. Joseph Mikhael (IMF Chief Medical Office). European Hematology Association (EHA) meeting is scheduled, and then a smaller meeting of member organizations is held in Highlights included: December at the time of the annual meeting of the American • The IMF Black Swan Research Initiative® and iStopMM Society of Hematology (ASH). But nothing has been “typical” (Iceland Screens Treats or Prevents Multiple Myeloma), during the COVID-19 pandemic, and the 2020 GMAN Summit was held virtually over two days on September 23 and 24. • Future myeloma therapies beyond 2020, The 2020 GMAN Summit was attended by nearly 40 advocates • COVID-19 and Myeloma, and representing myeloma organizations from 5 continents and • ASCO and EHA summaries that included information about: 31 countries. The event was organized by Serdar Erdogan, IMF Blenrep® (belantamab mafodotin-blmf), the first antibody- Director of Europe & Middle East, and co-founder of Living ° drug conjugate (ADC) approved for myeloma by the United With Myeloma Initiative and Cancer Survivors Association in States Food and Drug Administration (FDA) in August 2020, Turkey. This year’s GMAN Summit theme was “Myeloma ‘More On’ Digital”. ° CAR T-cell therapy in clinical trials showing improved efficacy and safety, and Our Summit began with reports by the recipients of the 2019 Susie Novis Durie Educational Grants. Representatives from ° Very promising clinical trials with bispecific T-cell engager South Korea (“Education Program Combined with Healing (BiTE), melflufen, CELMoDs (a new drug class in myeloma), Walk”), Colombia (“Digital Awareness Program”), and Sweden and more.

16 FALL 2020 [email protected] myeloma.org Dr. Brian G.M. Durie Susie Durie Serdar Erdoğan IMF Chairman IMF President & CEO IMF Director of Europe and Middle East

Martine Elias Nella Combe Lise-lott Eriksson Myeloma Canada Myeloma Australia Blodcancerförbundet, Sweden

Yolima Méndez Camacho Soren Dybdahl Fundación Colombiana de Leucemia y Linfoma Dansk Myelomatose Forening, Denmark

In addition, both days of the Summit saw presentations by and examples of their own experiences dealing with stress while also discussions with our event sponsors Amgen, BMS (Celgene), GSK, managing many other tasks. Sanofi, and Takeda, including product updates and drug costs, Presentations of Best Practices were provided by GMAN mem- global patient surveys, efficacy of clinical trials versus effective- bers from Australia, Denmark, and Singapore. Myeloma Australia ness of real-world evidence (RWE), and clinical development developed nurse-led services and core programs for patients. strategy for myeloma. Denmark developed an awareness campaign targeting general Mimi Choon-Quinones (IMF Senior VP, Global Advocacy, Access, practitioners, working closely with Danish Media, in order to Policy & Research) presented a 5-year plan (2020-2025) for the improve earlier detection. The Asian Myeloma Network (AMN) Beyond Medicines’ Barriers program, with an emphasis on provides physician education and patient support in order to 1) Leave No One Behind, 2) Research Gaps, and 3) Demonstrating improve the quality of myeloma care. Sharing these practices and Value all with a goal of improving global access to care more is what GMAN is all about! and therapy. While we missed catching up face-to-face, Serdar and other GMAN members also broke into virtual team meeting rooms Summit participants provided a huge amount of information, focusing on Awareness, Access, and Advocacy to not only share education, and exciting programs. Personally, I can’t wait until experiences among countries, but also try to provide an idea for our next GMAN meeting! MT action in each of the three areas. 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 818.487.7455 worldwide FALL 2020 17 Special Event 14th Annual Virtual Comedy Celebration 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) Each Fall since 2007, the IMF has hosted the star-studded marked the 30-year anniversary since our founding in 1990. event in Los Angeles, featuring live music and performances Fourteen years ago, we began to celebrate each IMF anniver- by renowned comedians. This year, on October 23, the IMF sary by hosting the annual Comedy Celebration benefiting held its 14th Annual Comedy Celebration in virtual format, the Peter Boyle Research Fund. This event began one year and it was an event like no other! The special evening was after the passing of Peter Boyle, beloved actor, myeloma hosted online by our friend Ray Romano, who shared the tele- vision screen with Peter Boyle on the hit sitcom “Everybody patient, and passionate supporter of the search for a cure. Loves Raymond” from 1996 to 2005. The two-hour vir- Since then, thanks in great part to the efforts of Peter’s wife tual event honored Peter Boyle and reunited the cast for a Loraine Alterman Boyle, who has served as Event Chair for reunion “table-read” to revisit their characters and re-cre- each of the 14 annual events, the Comedy Celebration has ate selected scenes on the 15th Anniversary of the sitcom’s become the IMF’s biggest night of the year, raising millions on-air finale. Ray Romano was joined by Patricia Heaton, Brad of dollars for innovative myeloma research of the IMF’s Black Garrett, Monica Horan, and the sitcom’s Executive Producer Swan Research Initiative® (BSRI®). and co-creator, Phil Rosenthal.

18 FALL 2020 [email protected] myeloma.org 14th Annual Virtual Comedy Celebration

Ray Romano launched the table-read by stressing the con- Peter Boyle Research Fund, which supports the IMF’s ground- tinuing importance of myeloma research, while referencing breaking Black Swan Research Initiative. the reality of life during a pandemic. Romano also quipped that the table-read would be “nostalgic, scary, and fun. Kind of If you missed the intimate evening of sharing and laughter like my honeymoon!” It was definitely a night of fun and look- “live,” you can still tune into the video-on-demand (VOD) at ing back at the scenes that made so many people laugh for IMF’s YouTube channel at youtube.com/user/IMFMyeloma almost a decade. Special guest Alex Meneses reprised her role and on the event website at comedy.myeloma.org. And, of Stefania, the Italian vixen who tries to lure Robert Barone while the show may be over, there is still time to bid on exclu (Brad Garrett) from his fiancé played by Monica Horan. Many sive cast memorabilia, virtual celebrity meetups, and more. other celebrities made “visits” to pay tribute to Peter Boyle, Visit charitybuzz.com/IMF through December 3rd for hot including Alec Baldwin, Tom Brokaw, Peter Gallagher, Robert ticket auction items. MT Klein, Michael McKean, Kevin Nealon, Annette O’Toole, Sherri Shepherd, and others.

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” pod- cast host Alie Ward.

The IMF is grateful to Ray Romano and the talented perform- ers, 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 Tom Brokaw Peter Gallagher Robert Klein

Annette O’Toole & Michael McKean Kevin Nealon Sherri Shepherd Jen Curran

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 19 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 Barbara Freitag

Ronda Gomez-Quinones Dr. & Mrs. Robert Kyle

20 FALL 2020 [email protected] myeloma.org You’ve got questions... He’s got the answers. #AskDrDurie

A weekly web series from the IMF Recent topics: COVID-19 FAQ #23: As the pandemic continues, COVID-19 FAQ #21: How should myeloma what does the future hold for myeloma patients? 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 COVID-19 FAQ #19: Should myeloma patients recommendations changed for 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! Replay the archived recording and listen to the experts at this informative webinar MATT FAIMAN BETH FAIMAN MD, MBA, FACP PhD, MSN, APRN-BC, myeloma.org/imf-videos AOCN, FAAN

800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 21 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!

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Lynn K. Green, Ed.D. Senior Vice President, Philanthropy 334.332.0888 | [email protected]

22 FALL 2020 [email protected] myeloma.org 800.452.CURE toll-free in USA and Canada 818.487.7455 worldwide FALL 2020 23 International Myeloma Foundation 12650 Riverside Drive, Suite 206 North Hollywood, CA 91607-3421 USA myeloma.org 800.452.CURE Change Service Requested Printedin USA © 2020 International Myeloma Foundation. All rightsreserved.

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myeloma.org.au myelomacanada.ca amen.org.il myeloma.gr.jp mielomabrasil.org (Australia) (Canada) (Israel) (Japan) (Latin America)

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