Volume 20 Number 3
Summer 2020
Myeloma Today A publication of the International Myeloma Foundation
A Message from the IMF President & CEO
In this edition: Highlights of Virtual 2020 Annual Meetings of ASCO and EHA: A New Class of Drugs, New Agents, and Clinical Trial Updates PAGE 4
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
Patient Meetings Coordinator, US Carmen Greene cgreene@myeloma.org Meeting Registration & Guest Relations Abigail Guzman aguzman@myeloma.org Director, Regional Community Workshops Brenda Hawkes bhawkes@myeloma.org
Accountant Phil Lange plange@myeloma.org
Web Producer Miko Santos msantos@myeloma.org
Assistant to Senior Director, Member Events Karla Lemus klemus@myeloma.org
Regional Director, Support Groups Kelley Sidorowicz ksidorowicz@myeloma.org
Senior Director, Public Policy & Advocacy Robin Levy rlevy@myeloma.org
Donor Relations Sarah Solomon ssolomon@myeloma.org Accounting & Distribution Brando Sordoni bsordoni@myeloma.org
InfoLine Coordinator Paul Hewitt phewitt@myeloma.org
Senior Research Project Coordinator Amirah Limayo alimayo@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
Vice President, Support Groups Robin Tuohy rtuohy@myeloma.org
Assistant Director, Member Events Ilana Kenville ikenville@myeloma.org
Director, Operations Selma Plascencia splascencia@myeloma.org
InfoLine Coordinator Judy Webb jwebb@myeloma.org
Donor Relations Heather Fishman hfishman@myeloma.org
InfoLine Coordinator Missy Klepetar mklepetar@myeloma.org
Donor Relations Jonathan Weitz jweitz@myeloma.org
Support Group Coordinator Jon Fitzpatrick jfitzpatrick@myeloma.org
Manager, Marketing & Communications Sapna Kumar skumar@myeloma.org
Director, Meetings & Events Annabel Reardon areardon@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
Database Analyst Joy Riznikove jriznikove@myeloma.org
Director, Public Policy & Advocacy Raymond L. Wezik, JD rwezik@myeloma.org
This free issue of Myeloma Today© (Volume 20, Number 3) is dated August 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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info@myeloma.org
myeloma.org
A Message from the IMF President & CEO Dear Reader, Here we are in late summer and usually we are grateful for the time we’ve had to go out, have some fun, and just relax. But the summer of 2020 has been like no other. As much as I’d like to say that all is well, it’s not. We’re in a global pandemic – something none of us have ever experienced before. It’s hard to wrap my head around the concept that the “new normal” is staying home, maintaining our social distancing, and wearing masks. That said, we must remember to stay positive. Having a positive outlook can feel difficult, but we must be diligent. People often say, it’s the little things in life that really count and make us smile and laugh - and this is true! Watching my sweet dogs play and cuddle with each other lifts my spirits. Lilly is 16 and Lulu is now 4, which makes me think, “Where does the time go?” Lilly must be dyeing her hair as she doesn’t look 16 – she has very few gray hairs and still loves to play.
We are resilient – we must remember this! – and we will get through this challenging time together. Across the US and all around the world, we are “One Myeloma Nation.” For some members of our team, it’s quite customary to be working from home. But for many of us who live near the IMF headquarters in the Los Angeles area, it’s hard not to be going to the office. While we’re diligent about practicing social distancing, some of our local teammates go into the office to get work done. I can’t thank them enough! I know that behind their masks there is a smile, and that means the world to me. It’s not easy to have your mask on all day and be surrounded by the plexiglass shields around your desk – not to mention hand sanitizers everywhere!
800.452.CURE toll-free in USA and Canada
818.487.7455 worldwide
In this “new normal,” my IMF teammates are ensuring that myeloma patients and their caregivers are getting everything that they need from the IMF, when they need it. We continue to send out InfoPacks and publications as requested, the InfoLine checks and returns messages throughout the day, and our virtual Support Group meetings provide safe connection for all who dial in, even if they are across the country from one another!
Even our fundraising efforts are going virtual, and it’s great to see people coming up with original and innovative ways to support the IMF and one another from a safe distance. Our Member Events team has been kicking around some ideas to spur your imagination, and we are ready and available to chat with you about yours. As many of you may know, in 2020 the IMF is celebrating its 30th year of service to the myeloma community. We hope to mark this milestone with continued research into an updated diagnostic scoring system and progress in the ongoing myeloma “Cure Trials.” I’ve said before – please never give up. I won’t, and I’m always here for you, no matter what! Warm regards,
Susie Durie, IMF President & CEO
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Scientific & Clinical
#W
DR J S I E R HE
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Highlights of Virtual 2020 Annual Meetings of ASCO and EHA
By Dr. Joseph Mikhael IMF Chief Medical Officer
As with so many meetings and events in 2020, the gatherings of two major annual meetings in the world of myeloma – the American Society of Clinical Oncology (ASCO) in Chicago and the European Hematology Association (EHA) in Frankfurt – went virtual this June. Nonetheless, these were very important meetings, with presentations of new developments in myeloma. Despite the COVID-19 pandemic, robust myeloma research continues to advance and I have a lot to share with you.
ENDURANCE clinical trial Of all of the thousands of abstracts submitted to ASCO, only the top 4 are selected for the “plenary” session. This special session is designed to highlight the most important research in cancer and how it influences clinical practice. The ENDURANCE clinical trial was presented as part of the plenary session. ENDURANCE is a phase III clinical trial of Kyprolis® (carfilzomib) + Revlimid® (lenalidomide) + dexamethasone (KRd) versus Velcade® (bortezomib) + lenalidomide + dexamethasone (VRd) in frontline therapy in myeloma patients who were not planning on going to autologous stem cell transplant (ASCT) and who do not have high-risk disease. The study showed no benefit of one triplet therapy over the other with regard to progression-free survival (PFS), 31.7 months with VRd and 32.8 months with KRd. Patients in the VRd arm of the study experienced more neuropathy. More cardiac events occurred in the KRd arm. There was a higher and deeper response rate with KRd, but this did not result in longer remission. The study authors concluded that VRd remains the “standard of care” in frontline therapy when patients are not going to transplant. I think this is a reasonable conclusion. Importantly, we tend not to use KRd in frontline therapy in myeloma patients not going to transplant, but consider it in high-risk patients and those going on to transplant. We need more data that will help inform us how to best treat those patients, and that is not addressed in the ENDURANCE clinical trial. I would suggest that the ENDURANCE clinical trial simply confirms what we know already.
Belantamab mafodotin This novel agent, an antibody-drug conjugate (ADC) that was profiled in my article in the Spring 2020 edition of Myeloma Today, was recently approved by the U.S. Food and Drug Administration (FDA). We saw more updates of this drug at both the ASCO and EHA meetings, primarily how it can be used in combination with other agents such as bortezomib, Pomalyst® (pomalidomide), and others. Moving forward, this ability to be 4
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combined with other agents will be very important, because we routinely use combinations of agents in myeloma treatment. The next edition of Myeloma Today will go into greater detail about this novel agent.
CAR T-cell therapy Some of the most exciting data presented at ASCO and EHA were updates on several clinical trials on chimeric antigen receptor (CAR) T-cell therapy. This unique approach involves collecting T cells from patients, “training” these cells to recognize the patient’s individual myeloma, multiplying them in the lab, then re-infusing them into the patient to attack their myeloma. In patients with very heavily pretreated myeloma – patients who have been treated with all available approved therapies – we are now seeing response rates of more than 75%. However, we know that this approach is not curative, and we still see patients relapse on average around 9-12 months after the T-cell infusion. That is still remarkable, considering how little we have for myeloma patients that late in the disease course. I am also encouraged that CAR T-cell therapy is becoming safer as we hone this process more fully. The rate of cytokine release syndrome (CRS) is dropping and we are becoming more adept at treating it when it does occur.
Teclistamab As also discussed in the Spring 2020 edition of Myeloma Today, bispecific antibodies are being developed in myeloma. These are drugs that bind to both the myeloma cell and local T cells to engage the T cells to kill the myeloma. This is a simplified version of CAR T-cell therapy that does not require T cell collection and re-infusion. Teclistamab (JNJ-7957), the newest drug in this class, was profiled at the ASCO and EHA meetings. It is still early to fully understand how effective teclistamab will be, but it is encouraging that myeloma patients who are very heavily pretreated can respond to this approach. Furthermore, we are seeing that these agents are becoming more safe, with less CRS than before, and we can give these agents more conveniently with shorter infusions.
BOSTON clinical trial Xpovio® (selinexor) was approved by the FDA one year ago for use in myeloma with dexamethasone alone, but we have been awaiting the results of large clinical trials of this drug in combination. The BOSTON clinical trial is a phase III study of selinexor + bortezomib + dexamethasone (SVd) versus info@myeloma.org
myeloma.org
bortezomib + dexamethasone (Vd). Adding selinexor to bortezomib showed deeper response rates (increased by about 15%) and longer time in remission (prolonged by about 4.5 months). In addition to this, the bortezomib was given weekly, resulting in less neuropathy. The known side effects of selinexor were also lessened, likely reflecting that it is easier to take once weekly as opposed to twice weekly when given with dexamethasone alone.
Cell modulatory drugs A new class of drugs has been developed. Cell modulatory drugs are somewhat similar to immunomodulatory drugs like lenalidomide and pomalidomide, but seem to be able to overcome resistance to immunomodulatory drugs. The cell modulatory dugs (often called “cell mods” for short) are oral medications that are given daily. Cell mods seem to be very well tolerated. In patients who have already been treated with immunomodulatory drugs, the response rate to cell mods is around 25-30%. Of course, we need more mature data on cell mods, but it is very encouraging as overcoming this resistance is needed in myeloma.
IKEMA clinical trial Earlier this year, Sarclisa® (isatuximab), the novel monoclonal antibody directed against CD38, was approved by the FDA in combination with pomalidomide for relapsed myeloma. Isatuximab is now being tested in combination with several other myeloma drugs. The IKEMA clinical trial was a phase III
trial of isatuximab + carfilzomib + dexamethasone (SKd) versus carfilzomib + dexamethasone (Kd) in patients with 1 to 3 prior lines of therapy in myeloma. IKEMA was highlighted in the “LateBreaking Abstracts” at EHA as an important clinical trial with new results. Indeed, adding isatuximab to carfilzomib is very feasible and significantly improves response rates, especially deep responses like minimal residual disease (MRD) negativity (30% versus 13%). This is not yet an approved FDA indication, but it is expected to be soon. This is just a brief review of the great research going on in the world of myeloma right now. And there is even more to be excited about! I invite you to view the IMF’s archived Post-ASCO and EHA webinar with Dr. Brian G.M. Durie and Dr. Craig Cole. I was honored to be a part of it. Myeloma remains an awful disease, but it is exciting to see that our tools to take it down are growing in quantity and quality so quickly. MT Visit videos.myeloma.org and click “ASCO” for more information, and stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column in the fall edition of Myeloma Today. Please contact the IMF InfoLine for help with your myeloma-related questions and concerns. Information specialists Paul Hewitt, Missy Klepetar, and Judy Webb can be reached at 800.452.CURE in the US and Canada or 818.487.7455 worldwide. Phone lines are open Monday through Friday, 9 a.m. to 4 p.m. (Pacific), or please email InfoLine@myeloma.org to submit your query electronically.
POST ASCO AND EHA 2020 Replay this timely and important webinar at myeloma.org/imf-video
Joseph Mikhael, MD
800.452.CURE toll-free in USA and Canada
Brian G.M. Durie, MD
818.487.7455 worldwide
Craig Cole, MD
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Scientific & Clinical
Live webinar recorded on
AUGUST 15 2020
MULTIPLE MYELOMA PATIENT SAFETY AND UPDATES Patient and Family Webinar
Replay the archived recording at MYELOMA.ORG/IMF-VIDEOS
Joseph Mikhael, MD
Brian G.M. Durie, MD
Thomas Martin, MD
Jack Aiello
Listen to the experts at this informative webinar – myeloma.org/imf-video
You’ve got questions... He’s got the answers.
Recent topics:
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#AskDrDurie
A weekly web series from the IMF
COVID-19 FAQ #19: Should myeloma patients visit the dentist during the pandemic?
COVID-19 FAQ #16: Is it safe for myeloma patients to travel by airplane?
COVID-19 FAQ #18: Is Ninlaro® a safe treatment alternative for myeloma patients during the pandemic?
What are the results from the ENDURANCE trial that compares KRd to VRd in newly diagnosed myeloma patients?
COVID-19 FAQ #17: How high of a risk do asymptomatic carriers pose to myeloma patients?
COVID-19 FAQ #15: Is dexamethasone helpful against the COVID-19 infection?
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Nurse Leadership Board
Meet the NLB Members By Diane Moran IMF Senior Vice President, Strategic Planning
Kevin Brigle, PhD, NP Massey Cancer Center Virginia Commonwealth University Donna D. Catamero, ANP-BC, OCN, CCRC
In 2006, the IMF founded the Nurse Leadership Board® (NLB) as a professional partnership to represent nurse experts caring for myeloma patients at leading medical centers. NLB members have educated thousands of nurses and empowered hundreds of thousands of patients and their caregivers. The NLB is
improving the nursing care and self-care of patients with myeloma via consensus publications, symposia, multimedia, and research. In this edition of Myeloma Today, we are pleased to introduce you to three NLB members: Donna Catamero, Michaela Hillengass, and Mary Steinbach.
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
Donna D. Catamero, ANP-BC, OCN, CCRC
Myeloma Translational Research Mount Sinai Health System
Michaela Hillengass, RN* Roswell Park Comprehensive Cancer Center *German certified
Donna Catamero has been working in myeloma for nearly 20 years, and advancing treatment for myeloma patients has become her life’s passion. She was a member of the NLB from 2014 to 2018, and returned in 2020 after working in the pharmaceutical industry for two years. Donna is currently the Associate Director for the Myeloma Translational Research program at Mount Sinai Hospital in New York City. She has authored or co-authored numerous manuscripts on myeloma that have been published in peer-reviewed journals. Michaela Hillengass recently relocated to the United States from Germany, where she received her training and certification as a registered nurse. Her career began in trauma surgery, then expanded to anesthesiology. After Michaela received her certification as a charge nurse, she continued her education to become a pain nurse, then acquired certification as Case Manager. She worked at the University Hospital of Heidelberg, Germany, the clinic with the largest myeloma unit in Europe. Michaela is currently an exercise trainer and study coordinator at Roswell Park Comprehensive Cancer Center, where she is responsible for a clinical trial with myeloma patients. She has served as a research associate for CAR T-cell and other clinical trials. 800.452.CURE toll-free in USA and Canada
Mary Steinbach,
Ann McNeill, RN, MSN, APN John Theurer Cancer Center Hackensack University Medical Center
Huntsman Cancer Institute University of Utah
Teresa S. Miceli, RN, BSN, OCN William von Liebig Transplant Center Mayo Clinic – Rochester
DNP, APRN
Michaela has 23 years of experience as a nurse, with four manuscripts published in peer-reviewed journals and a poster presentation at the 2017 International Myeloma Workshop (IMW) in New Delhi. In 2018, due to her experience with nursing in Europe, she joined the NLB as an associate member. Michaela’s main areas of interest are nursing education, quality of life, and physical exercise for myeloma patients.
Mary Steinbach is a nurse practitioner in the Division of Hematology and Hematologic Malignancies at the University of Utah, where she works within the Huntsman Cancer Institute Blood and Marrow Transplant program. Mary began her career in 2004 as a registered nurse working in hematology/oncology and internal medicine for seven years prior to obtaining her advanced Doctor of Nursing Practice degree. She has a passion for providing individualized care to patients with myeloma while focusing on the effects of illness on their lives and on their families. She is currently a member of the American Academy of Nurse Practitioners. Mary has authored or co-authored six manuscripts published in peer-reviewed journals. MT
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
Please visit nlb.myeloma.org to learn more about the work of the IMF’s Nurse Leadership Board.
818.487.7455 worldwide
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Education & Awareness
IMF Regional Community Workshops
Empowering Myeloma Patients in Communities Across the US By Brenda Hawkes IMF Director, Regional Community Workshops
Shortly after the founding of the International Myeloma Foundation, when Susie Durie (IMF President & CEO) attended a large medical conference, she saw doctors meet with myeloma experts and wondered, “Where are the patients? Why are they not meeting with these experts?” Through that experience, the idea for IMF Patient & Family Seminar program was born and the first-ever patient meeting took place shortly thereafter in 1995. No other organization offered such a program! For the past 25 years, the IMF has been hosting Patient & Family Seminars in major cities in the United States and around the world. These meetings enable patients to learn about the latest developments in myeloma from a panel of world-renowned myeloma experts. Armed with cutting-edge information, patients can make informed treatment choices. The seminars also create an opportunity for patients to interact with others touched by myeloma. The IMF Patient & Family Seminars are a wonderful forum for all! Approximately 12 or 13 years ago, my colleague Kelly Cox (IMF Director, Support Groups & Regional Community Workshops) saw a need and an opportunity to expand the IMF meetings program to reach families in smaller communities across the US. The Regional Community Workshop (RCW) program is based on the Patient & Family Seminars, but RCWs are one-day events, usually held on a Saturday. There are only 75–100 participants so that doctors and patients have more time to talk with one another. The IMF hosts up to 12 RCWs per year, and attendance is always free of charge. In 2020, the IMF will host its 100th RCW. Due to COVID-19, we suggest you visit rcw.myeloma.org for up-to-date information about upcoming workshops. Craig Emmitt Cole, MD MSU Breslin Cancer Center– Lansing, Michigan
“The strongest weapon patients and families have to use against myeloma is knowledge. It is empowering to learn about the disease and how it is treated and monitored, and to keep up with the innovations that are taking place. As faculty at the IMF Regional Community Workshops, I am honored to help empower patients and their family members in the fight against this disease!” Robin Tuohy IMF Vice President, Support Groups
“The RCW program offers access to top-tier myeloma experts for patients who don’t live near major cities, and it’s likely that this is something they wouldn’t get otherwise. They also have a chance to talk with long-term survivors and patient advocates like my husband, Michael Tuohy, whose 20-year journey is truly inspiring.”
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The RCWs make it possible for patients from smaller communities to have access to some of the country’s leading myeloma experts, as well as to the local specialists. It also provides a time and place to learn the most vital information about research and treatment. A member of the IMF Nurse Leadership Board (NLB) is also on hand to talk about the IMF’s Living Well with Myeloma program, and there is always time to have questions answered by a healthcare professional. In addition, RCWs encourage patients and caregivers to form relationships with others who are on the myeloma journey. As Kelly says, “Recently, I met a patient from Kansas City who’s had myeloma for 21 years. She has attended several RCWs and says that the information she learned there has been a guide for her treatment decisions.” Kelly continues to be the driving force behind the success of the RCW program, and he always works in partnership with local IMF-affiliated myeloma support groups to make sure that each RCW benefits as many patients and caregivers as possible. Kelly has a unique gift for creating just the right atmosphere for a comfortable, relaxed, and productive event. He is just so genuine. I have attended nearly 40 RCWs since 2011, and they are always the highlights of my year. This year, I am honored to join Kelly as a partner in this program to hopefully expand the reach and frequency of these workshops. Until now, Kelly managed the entire RCW program by himself, and this is such a huge accomplishment! MT Teresa S. Miceli, RN BSN OCN IMF Nurse Leadership Board BMT RN Care Coordinator, Mayo Clinic – Rochester, Minnesota
“The RCWs provide a venue for patients to meet myeloma experts in a comfortable and non-threatening environment, to ask candid questions and get real-time answers. These workshops are my favorite way to spend time with patients and caregivers outside of the clinic, hearing real-life stories of how myeloma affects day-to-day life and offering education for Living Well with Myeloma.” Kelly Cox IMF Director, Support Groups & Regional Community Workshops
“At the IMF Regional Community Workshops, we have a seat for every person who is dealing with myeloma.”
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Advocacy
Myeloma Advocacy in the Age of COVID-19 By Robin Levy IMF Senior Director, Public Policy & Advocacy
For most people around the world, 2020 has been a year unlike any other. As of the writing of this article, the COVID-19 pandemic has taken the lives of more than 171,000 Americans of all ages and walks of life. In response to this threat, many state governors had taken the extraordinary step of closing all but the most essential functions of everyday life. These actions, of course, have had wide-ranging impacts on nearly every person in the country, but we thought we would take a moment to describe how these changes have affected the efforts of the IMF Advocacy team, and how we have worked to bring about change that would help myeloma patients during these unprecedented times. The obvious problems arose immediately following the rapid succession of state closures while the method of virus transmission was unclear. If it is unsafe to go out in public, how can cancer patients receive treatment, visit doctors for exams, or even go to the grocery store? The IMF as a whole needed to rely on the expertise of each department to provide guidance and advise patients on the best course of action in various situations. Please visit myeloma.org/covid19-myeloma-patients for updates from the IMF on COVID-19 and myeloma. For the IMF Advocacy team, it was important to understand how medical professionals are working to keep patients safe and to relay those concerns to the state and federal government. As is often the case in Washington, certain concepts develop their own gravity that pulls support together around a few ideas quickly, and it was imperative that the concerns and needs of myeloma patients were considered when those solutions crystalized. As legislative ideas began to form, two basic needs stood out from an advocacy perspective: (1) alternatives to treatment at a clinic or center should be considered when possible and medically appropriate and (2) patients should be able to use their phones and technology to virtually meet with their healthcare team. The issue of treatment at home meant that we needed to understand what alternatives to in-person treatments were or were not feasible for myeloma patients. We also needed to know what barriers existed to access those treatments, and how those barriers could be overcome through government action. After speaking with the IMF’s medical education team, it became clear that – where medically appropriate – the safer approach was shifting patients from receiving infusions to oral therapies. The barriers to these forms of treatment are already familiar to many myeloma patients and their loved ones. As a reminder, due to outdated insurance benefit design, oral anticancer medications have a co-insurance cost-sharing mechanism that places a heavy financial burden on patients to the tune of thousands of dollars per month when compared to the more affordable co-pays for infusion treatments. That is why we have been focusing on educating legislators about solutions, such as oral parity, that would lower what patients are paying out-of-pocket for these drugs. This issue was important before the pandemic, but with more patients needing access to these drugs to stay safe, oral parity legislation is even more significant. 800.452.CURE toll-free in USA and Canada
818.487.7455 worldwide
The use of technology for patients to speak with healthcare professionals was a bit easier for decision-makers to understand. If a patient could speak to their doctor or use video to show their care team any visual ailments, then they could forgo a trip into the office. Luckily, this particular problem was immediately understood by the cancer community, and Congress and the administration acted quickly. There are many other areas where the IMF Advocacy team continues to work to ensure that myeloma patients are safe, such as examining how clinical trials are operating, reviewing how states plan to triage patients, ensuring cancer patients do not face discrimination, and working to make sure that patients can receive adequate supplies of their medications. We will continue to advocate for you. If you face problems in your care related to the COVID-19 pandemic, please let us know. It is important for legislators to know what patients are facing and we are happy to help amplify your voice. MT
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.
SUPPORT FOR VETERANS Get Your VAM Guide to VA Benefits
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.
YOU ARE NOT ALONE. THE IMF IS HERE TO HELP. VETERANS.MYELOMA.ORG
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International Partners
IMF Programs and Activities in Europe By Serdar Erdoğan IMF Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs
In February 2020, before the COVID-19 pandemic altered life for many of us in Europe, Susie Durie and Dr. Durie were able to visit Turkey and participate in the 13th New Trends in Hematology congress in Istanbul. In advance of the congress, Dr. Durie presented a lecture at Koç University Hospital about the Black Swan Research Initiative® (BSRI®), the IMF’s global research project established in 2012 to both find a cure for myeloma and to prevent it in the first place. Dr. Durie’s talk covered minimal residual disease (MRD, the small numbers of malignant cells that remain in a person after treatment), ongoing “CURE” clinical trials by the IMF, and potential therapy of myeloma beyond 2020. At the end of the lecture, he gave an interview to Turkish journalists about CAR-T cell therapy and the importance of novel treatments in myeloma. Next, at the New Trends in Hematology congress on February 15, Dr. Durie gave his long-awaited presentation to hematologists from many different regions of Turkey.
Many kilometers and the need for social distancing can’t diminish the unity of the global myeloma community
He shared the updates on myeloma therapies and novel agents as a post-ASH 2019 review. After the first surge in COVID-19 cases in March and April, some European countries experienced a marked decrease in the number of coronavirus cases while others experienced a more modest decrease of cases or a plateau. Several countries have been quick and decisive in enacting strict population and individual (continues at bottom of next page)
In February 2020, Dr. Brian G.M. Durie with doctors from across Turkey at the New Trends in Hematology Congress
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Asian Myeloma Network: The Progress Continues By Daniel Navid IMF Senior Vice President, Global Affairs
In these unprecedented times around the world, the countries in Asia have done relatively well in controlling the COVID-19 pandemic. Quite quickly, mandatory measures were introduced, including mask-wearing and social distancing. In addition, there were quarantines and curfews, border closings and restricted gatherings. At present, in most of the countries and regions that are part of the IMF’s Asian Myeloma Network (AMN), economies have reopened and life is slowly returning to something approaching “normal,” although for the most part borders remain closed. Over the past several months, the IMF’s work in Asia has been adapted accordingly. Planned face-to-face AMN meetings have been either deferred to a later date or transformed into virtual events. The Asian Myeloma Network Summit, the main event on the AMN’s 2020 calendar, was scheduled to take place in Singapore in mid-October, but will now occur as a virtual event. In association with the 2020 AMN Summit, we planned to convene the inaugural IMF Asian Master Class for South East Asian doctors who treat myeloma but, needless to say, this event will have to be rescheduled for a later date. Also, several scheduled seminars for myeloma patients and family members in Asia have now been moved online. This includes patient meetings in Hong Kong, Korea, Singapore, and Taiwan. Perhaps given the relatively low numbers of COVID-19 infections in Asia, patients with myeloma are rarely included amongst those infected. The AMN is in the process of collecting data on this, and we will report accordingly. I am pleased to report that one area of activities for the AMN is progressing quite well. Currently, there are four AMN myeloma clinical trials underway throughout Asia. These studies include Kyprolis® (carfilzomib), Pomalyst® (pomalidomide), and Darzalex®
(daratumumab). There are three more clinical trials now under negotiation, and we expect to begin shortly with studies of Sarclisa® (isatuximab), Xpovio® (selinexor), and venetoclax. In addition to providing valuable research data for myeloma management, these clinical trials have been extremely important in securing access for patients to treatments approved in the West but not yet available in Asia. The IMF’s Asian Myeloma Network is the only group carrying out such work in the Asian region. MT Please email dnavid@myeloma.org for more information on current and upcoming IMF programs in Asia.
CONTINUED FROM PREVIOUS PAGE restrictions. Lockdowns, social distancing, and masks have been the “new normal” for many of us. The pandemic lockdowns caused all planned IMF in-person meetings and seminars in Europe to be rescheduled as virtual events for Fall 2020. In the meantime, digital pandemic-oriented projects like educational webinars, podcasts, video series, and translations of IMF resources about COVID-19 were made available to several communities across Europe. According to the mini-survey conducted with member organizations of the IMF’s Global Myeloma Action Network (GMAN), nearly all of them 800.452.CURE toll-free in USA and Canada
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have maintained communication with myeloma patients in their countries via online meeting platforms, social media, and emails. The annual GMAN Summit will also be held virtually on September 23–24, 2020. In these unique times, I am reminded how all of us live under the same sky. All of us face challenges and all of us have hopes, and I am so honored to be a part of the remarkable myeloma community that, above all, exemplifies the word Resilience. MT Please email serdogan@myeloma.org for more information on current and upcoming IMF programs in Europe and the Middle East. SUMMER 2020
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Myeloma Warriors
Fundraising While Social Distancing By Suzanne Battaglia IMF Senior Director, Member Events
Since 1997, the IMF has been working with people just like you to create and produce fundraisers that support myeloma programs and services. Anyone can participate – you can be 8 or 80 – and fundraisers can be as easy or as elaborate as you like. Although many in-person events have been postponed, there is still so much that can be done. If you have been practicing social distancing but still would like to support the IMF, our Member Events team has ideas that can spur your imagination. We can also help bring your fundraising ideas to fruition. Here are just some of the effective ways you can continue to fundraise remotely:
Myeloma 2020 campaign The “Myeloma 2020 – Closer to a Cure” campaign is an easy way for you to raise money for the IMF. You can continue to help the IMF in funding our programs and services, all without leaving the comfort of your own home. We can help you write a personalized letter or email to your family members, friends, and associates, telling them a little about the IMF and myeloma, and asking them to support your cause by making an online donation. The IMF will provide you with a link to your direct fund or we can send you self-addressed donation envelopes to include with your letter. For more information, or to begin your personal campaign, please visit give.myeloma.org/myeloma2020. You will be provided access to your Participant Center and personalized fundraising page, along with a sample letter. We are asking you to raise funds in increments of $200, and for every $200 goal
you reach, you will be rewarded with a raffle ticket for our wonderful luxury vacation in Hawaii myeloma.org/hawaii2020. Our goal is to ultimately hit the $200,000 mark, and we can do it with your help.
IMF grassroots events What sets the IMF’s peer-to-peer fundraising program apart from all the others? Two words: Support and Guidance. We are with you every step of the way! You can start your own event or join one of the many other grassroots events happening across the country with friends of the IMF. Our volunteer fundraisers help raise myeloma awareness in their local communities while raising much-needed funding for essential myeloma research, patient education, support, and advocacy programs.
Challenge fundraisers A “challenge fundraiser” is where you challenge your friends to donate an amount toward a goal that is personal to you. Visit give.myeloma.org/sweetbig16 to see an example.
Run, walk, or bike with virtual teams If you are an outdoor enthusiast but are now getting your exercise indoors, you can organize or join a virtual 5K or bike ride. Simply connect online with your fellow exercise enthusiasts and form a virtual team. You can train individually while sharing and discussing your training tactics online. To see an example, visit give.myeloma.org/miracles2020.
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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
Get a Tax Benefit by donating a vehicle to International Myeloma Foundation • Any Vehicle – Running or Not • Free, Convenient, Fast • CARS does all the work for you!
Visit myeloma.org/vehicle-donation or call (877) 999-8322 for questions or to get started The IMF thanks you! 12
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Josephine McAdam hosted the live-streamed Anti-Cancer Trivia Night with comedians Francisco Ramos, Forrest Shaw, and Andy Ostroff on twitch.tv to benefit the IMF. The event was based on the NPR radio show “Wait Wait... Don’t Tell Me!” The fun and funny evening raised $1,000 before it even started, and brought in more than $13,000 in total. “I have seen firsthand through my mother’s diagnosis of myeloma how important it is to have more research and support going into this lesser-known cancer. The leaps and bounds of how treatment options have advanced since my mother’s diagnosis is so inspiring.” — Josephine McAdam
“My mother was diagnosed with myeloma in September 2008. She fought hard and kept her spirits high for 12 years, and she always told us that we should celebrate her life. So in May 2020, I held a Scrabble competition charity stream on mixer.com to raise myeloma awareness and money for the IMF, and to celebrate my mom’s life. My mom loved Scrabble! Participating players posted photos of their boards and screenshots of the game with the hashtag #morememorieswithmom and we quickly met our fundraising goal.” — Josiah Philipsen
The 2020 Miles for Myeloma 5K Run/Walk, scheduled for April 25 in Philadelphia, was held in a virtual format for the first time in the 12-year history of this important event. Ilana Kenville (IMF Assistant Director, Member Events) hosted the opening and closing ceremonies on Facebook while in Arizona. “Participants chose to run, walk, bike, or treadmill on their own and at their own pace. You could even run one mile a day over the course of three days, or complete the full run at one time! Those opting for outdoor activities were asked to follow proper social distancing, while others chose to use indoor bikes and treadmills. To keep everyone inspired, IMF-affiliated myeloma support groups picked the song selections on a Spotify playlist, with myeloma patients in mind. We look forward to seeing you all in person next year at our 13th annual race!” — Ilana Kenville
Shop and give at the same time
Fundraisers using Twitch
Sometimes we just need a little bit of retail therapy. Luckily, even if you simply can’t go out to the shopping mall, the IMF has a virtual mall that also serves as a great way to help others. We have partnered with many major retailers, and when you shop through myeloma.org/donation/imf-shopping-mall, a portion of every purchase is directed to the IMF at no cost to you. And if you shop on Amazon, please go to smile.amazon.com and choose the IMF as your preferred charity.
If you have video “gamers” in your life, they can turn their game time into a fundraiser by using the Twitch platform. With Twitch, gamers are able to thank their donors in real-time, and it’s a great way to socialize while social distancing. To see an example, visit give.myeloma.org/trivianight2020.
Host a “Mail for the Cure” campaign
So let’s collaborate on a fun and productive event to support the fight against myeloma! We’ll work with you to create a personal webpage for your fundraiser and we’ll equip you with everything you may need to spread the word. Every dollar counts. MT
To organize a “Mail for the Cure” campaign, send out an email to your family, friends, and business associates, and let them know about your cause. We will help you create a personalized letter and set up an account where people can donate online to show their support. You’ll be surprised by how many people in your life will want to help, even in these challenging times.
To turn YOUR ideas into progress toward a cure for multiple myeloma, please contact Suzanne Battaglia, Senior Director of Member Events, at sbattaglia@myeloma.org or visit myeloma.org/take-action/fundraise to support member events that benefit the IMF.
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Join Us!
Support Group Meetings During COVID-19
The IMF takes the health and safety of myeloma patients seriously. Due to the COVID-19 coronavirus, the IMF recommends cancelling all in-person myeloma support group meetings at this time. The IMF has made available the technology for group leaders to host virtual meetings. Currently, many IMF-affiliated groups are meeting virtually, so if you have never before
experienced the benefits and the camaraderie of participation, now is the time to give it a try! Please contact Robin Tuohy (IMF Vice President, Support Groups) at rtuohy@myeloma.org or 203.206.3536 for specific details, and visit myeloma.org/covid19-myeloma-patients for updates on COVID-19 and myeloma.
Lynn K. Green, Ed.D. Senior Vice President, Philanthropy 334.332.0888 | lgreen@myeloma.org
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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)
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amen.org.il (Israel) 818.487.7455 (worldwide)
myeloma.gr.jp (Japan)
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