2020 ANNUAL REPORT
INTERNATIONAL MYELOMA FOUNDATION
RESEARCH | GLOBAL OUTREACH | EMPOWERING PATIENTS | TAKING ACTION
Improving Lives Finding the Cure
2020 ANNUAL REPORT
FISCAL YEAR OCTOBER 1, 2019 – SEPTEMBER 30, 2020
TABLE OF CONTENTS Message from the President and the Chairman of the Board
Research 6-10 Global Outreach Empowering Patients
Take Action / Ways to Give
Summary Financial Information
A MESSAGE FROM THE PRESIDENT AND THE CHAIRMAN OF THE BOARD
Susie Durie and Dr. Brian Durie at the International Myeloma Working Group conference in 2019
Dear Friends, It is hard to believe how much has happened since the pandemic came knocking on our doors. This year has been like no other year, and it’s very hard for a lot of us to wrap our heads around what has transpired. Just when we think we’re almost there – a roadblock will appear – and we have to retool. The good news is that the International Myeloma Foundation continues to collaborate with the best and brightest doctors and nurses, support groups, and caregivers!
Many of you are doing the same. Here are few things that are working, and we will continue to stick to them:
The IMF is a family, and we stick together. We help each other when needed. We mobilize our teammates. In a flash, we dig in and “do the work that needs to be done” to move the needle forward toward a cure.
Thank you for remaining by our side in 2020, and we will continue to be by yours in many years to come.
As we often like to remind people, we are “One Myeloma Nation” — no matter where we live, where we work, or what we like to eat and drink. In short, we’re all in this together. It’s truly amazing that we’ve united doctors, nurses, patients and their families, as well as friends who jump in to help us all, any way they can. We are truly a Global Organization, and from the very beginning, our mission has remained the same . . . to improve the quality of lives of myeloma patients while working toward prevention and a cure. At the IMF, we always focus on what needs to be done to find a cure.
• • •
We work together collaboratively in developing new projects. We do our best to continue to provide support and resources for you and your family, and we keep moving forward despite a pandemic. We’re here for YOU no matter what!
Susie Durie, IMF President and CEO Brian G.M. Durie, MD, Chairman, IMF Board of Directors
IMF Board of Directors Susie Durie
President & CEO International Myeloma Foundation Los Angeles, CA
Patient Advocate – Bentonville, Arkansas
Mario Boccadoro, MD
Brian G. M. Durie, MD
Chairman of the Board Professor of Medicine Hematologist/Oncologist – Los Angeles, CA
President of International Myeloma Foundation Latin America and Instituto Espaço de Vida – São Paulo, Brazil
Edith P. Mitchell, MD
Marketing Executive & Technologist New York, NY
Professor of Medicine – Philadelphia, PA
Charles Newman, MS
Professor of Medicine Torino, Italy
Benson Klein, JD
Andrew Kuzneski, III
Investment and Banking – Indiana, PA
Professor of Medicine Mayo Clinic – Rochester, MN
Martine Elias, MSc
Robert A. Kyle, MD
Matthew Robinson, MBA
George T. Hayum
Professor Heinz Ludwig, MD
E. Michael D. Scott, CPA, JD
Entrepreneur – Ann Arbor, MI
Attorney – Rockville, MD
Writer – New York, NY Executive Director Myeloma Canada – Quebec Entertainment Law – Los Angeles, CA
S. Vincent Rajkumar, MD
Professor of Medicine – Hematologist/ Oncologist , Mayo Clinic – Rochester, MN Professor of Medicine – Vienna, Austria
Owner/General Manager Swift House Inn — Middlebury, VT Scientific & Medical Communications Philadelphia, PA
IMF Executive Team Lisa Paik
Lynn K. Green, Ed.D.
Senior Vice President, Clinical Education & Research Initiatives
President & CEO
Senior Vice President, Philanthropy
Mimi Choon-Quinones, PhD, MBA
Chief Financial Officer
Senior Vice President, Strategic Planning
Senior Vice President, Global Affairs
Senior Vice President, Global Advocacy, Access, Policy & Research
Joseph Mikhael, MD
Chief Medical Officer
Vice President, Marketing
IMF Staff Betty Arevalo
Inventory Control Manager Senior Director, Member Events
Regional Director, Support Groups
Support Group Coordinator
Meeting Registration & Guest Relations
Senior Director, Support Groups & Director, Regional Regional Community Workshops Community Workshops
Director, Public Policy & Advocacy
Director, Global Myeloma Action Network and European & Middle Eastern Patient Programs
Assistant Director, Member Events Marketing & Communications Coordinator InfoLine Coordinator
Manager, Marketing & Communications
Phil Lange Accountant
Publication Design Administrative Assistant, Meetings & Events
Assistant to the Senior Director, Member Events
Senior Director, Public Policy & Advocacy
Senior Research Project Coordinator
Director, Meetings & Events Database Analyst
Miko Santos Web Producer
Regional Director, Support Groups Donor Relations
Accounting & Distribution
Assistant to the President
Vice President, Support Groups
Jonathan Weitz Donor Relations
In early 2020, the IMF team met in Los Angeles for an annual retreat to plan for the coming year. 5
The Black Swan Team discusses the progress of the ongoing “Cure” Trials. [From Left:] María-Victoria Mateos, MD, Phd (University of Salamanca — Spain); IMF Chairman of the Board Brian G.M. Durie, MD; Bruno Paiva, PhD (University of Navarro — Pamplona, Spain); Shaji Kumar, MD (Mayo Clinic — Rochester, MN); and S. Vincent Rajkumar, MD (Mayo Clinic — Rochester, MN).
THE BLACK SWAN RESEARCH INITIATIVE’S ONGOING PROJECTS The International Myeloma Foundation’s signature research project, the Black Swan Research Initiative® (BSRI®), fueled by a team of multinational myeloma researchers, continues to make strides. Below is a follow-up on BSRI projects that have been ongoing since 2016. •
Recent minimal residual disease (MRD) research focuses on Next Generation Flow testing in the blood (versus in the bone marrow) for disease monitoring. Early published results demonstrate the value of serial blood monitoring. New data emerging in the future will possibly validate the approach of combining NGF testing with mass spectrometry testing. This combined testing approach may reduce the need for frequent bone marrow testing. The ASCENT trial (Aggressive Smoldering Curative Approach Evaluating Novel Therapies) continues to evaluate the efficacy and safety of the combination of Darzalex® (daratumumab), Kyprolis® (carfilzomib), Revlimid® (lenalidomide), and dexamethasone in high-risk smoldering multiple myeloma (HRSMM). Its goal: to learn whether starting treatment early substantially improves outcomes, leads to a higher level of undetected MRD, to sustained remissions, and to a potential cure. The trial continues to accrue participants, and its early results are very promising. The CESAR trial is ongoing in Spain with Professor María-Victoria Mateos as the Principal Investigator. CESAR (Curativo Estrategia Smouldering Alto Riesgo, or Curative Strategy for High-Risk Smoldering) uses the combination of Kyprolis, Revlimid, and dexamethasone (KRd) with autologous stem cell transplant in the same setting as ASCENT. With a three-year follow-up reported at the American Society of Hematology annual conference in December 2019, 62% of patients have achieved deep responses and are MRD-negative at 10 -6 level, or zero out of one million bone marrow cells.
Finally, for patients not achieving MRD-negative status, many BSRI projects focus on characterizing the disease as residual and/or relapsing. Dr. Andrew Spencer in Australia leads a BSRI-supported team to evaluate DNA in the blood—so-called cell free or cfDNA. The team has observed a range of mutations that can serve as a basis for possible new treatment strategies for patients with residual disease.
ISTOPMM FORGES AHEAD IN 2020 In November 2016, the Iceland-based iStopMM (Iceland Screens, Treats, Or Prevents Multiple Myeloma) project was launched in Reykjavík. The project’s ambitious screening process to identify new patients with monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and multiple myeloma (MM) has been successful beyond all expectations, with more than 80,000 individuals screened and tested to date. The hard work continued as the team worked to understand as much as possible. Topline Questions from the Study: What clues might point to possible causes for MGUS/SMM/MM? A major reason for conducting this project in Iceland is that full DNA sequencing is available through deCODE Genetics for all participants. Because of this, genetic predisposing factors can be accurately assessed. In addition, participants’ full medical histories are available, including family history, occupations, and details of all medical interventions (such as surgeries) and medications used. Diet has already been closely studied. The possible triggering role of infections will now be explored in a new collaboration with investigators in another Black Swan project in France. These French investigators are studying if myeloma is being driven by infections such as hepatitis C or the Epstein-Barr virus. Initial results will be available soon.
2020 IN REVIEW
iStopMM’s Principal Investigator Dr. Sigurdur Kristinsson presents to his team in Reykjavík, Iceland.
How early does MGUS begin? Initial screening in the iStopMM project has been for individuals over 40 because the median age of onset for myeloma is approximately 67 years of age. The study uses mass spectrometry, a very sensitive technique for detecting the serum M-component. It shows that MGUS is occurring at a much younger age than expected, even below the age of 40. Studies of such younger patients, including detailed immune monitoring, are now ongoing to help understand the immune evolution of early disease. Initial results will soon be available. What is the risk status of patients screened in the iStopMM project? Initial results indicate that a majority of MGUS patients are “low risk” and can be followed safely. Conversely, the SMM patients are more frequently “higher risk” and need to be assessed for potential early intervention, with the goal of cure. Dr. Sigurdur Kristinsson, the iStopMM Principal Investigator, is to be congratulated. He pulled together a talented team of approximately 20 members. This team conducted testing, including baseline bone marrow evaluation, and psychological assessments to ensure that no undue stresses occur as a result of the screening process.
BSRI PUBLICATIONS FROM FISCAL YEAR 2020 Measurable Residual Disease by Next-Generation Flow Cytometry in Multiple Myeloma Bruno Paiva, Noemi Puig, Maria-Teresa Cedena, Laura Rosiñol, Lourdes Cordón, María-Belén Vidriales, Leire Burgos, Juan Flores-Montero, Luzalba Sanoja-Flores, Lucia Lopez-Anglada, Roberto Maldonado, Javier de la Cruz, Norma C Gutierrez, Maria-Jose Calasanz, Maria-Luisa Martin-Ramos, Ramón Garcia-Sanz, Joaquin Martinez-Lopez, Albert Oriol, María-Jesús Blanchard, Rafael Rios, Jesus Martin, Rafael Martinez-
Martinez, Anna Sureda, Miguel-Teodoro Hernandez, Javier de la Rubia, Isabel Krsnik, Jose-Maria Moraleda, Luis Palomera, Joan Bargay, Jacques J M Van Dongen, Alberto Orfao, María-Victoria Mateos, Joan Blade, Jesús F San-Miguel, Juan-José Lahuerta, GEM (Grupo Español de Mieloma)/PETHEMA (Programa Para el Estudio de la Terapéutica en Hemopatías Malignas) Cooperative Study Group. J Clin Oncol. 2020 Mar 10; 38(8): 784-792. Transcriptional profiling of circulating tumor cells in multiple myeloma: a new model to understand disease dissemination Juan-Jose Garcés, Michal Simicek, Marco Vicari, Lucie Brozova, Leire Burgos, Renata Bezdekova, Diego Alignani, Maria-Jose Calasanz, Katerina Growkova, Ibai Goicoechea, Xabier Agirre, Ludek Pour, Felipe Prosper, Rafael Rios, Joaquin Martinez-Lopez, Pamela Millacoy, Luis Palomera, Rafael Del Orbe, Albert Perez-Montaña, Sonia Garate, Laura Blanco, Marta Lasa, Patricia Maiso, Juan Flores-Montero, Luzalba Sanoja-Flores, Zuzana Chyra, Alexander Vdovin, Tereza Sevcikova, Tomas Jelinek, Cirino Botta, Halima El Omri, Jonathan Keats, Alberto Orfao, Roman Hajek, Jesús F. San-Miguel & Bruno Paiva. Leukemia. 2020 Feb; 34(2): 589-603. Blood monitoring of circulating tumor plasma cells by next generation flow in multiple myeloma after therapy Luzalba Sanoja-Flores, Juan Flores-Montero, Noemi Puig, Teresa Contreras-Sanfeliciano, Roberia Pontes, Alba Corral-Mateos, Omar García-Sánchez, María Díez-Campelo, Roberto José Pessoa de Magalhães, Luis García-Martín, José María Alonso-Alonso, Aranzazú García-Mateo, Carlos Aguilar-Franco, Jorge Labrador, Abelardo Barez-García, Angelo Maiolino, Bruno Paiva, Jesús San Miguel, Elaine Sobral da Costa, Marcos González, María Victoria Mateos, Brian Durie, Jacques J. M. van Dongen, Alberto Orfao on behalf of the EuroFlow Consortium. Blood. 2019 Dec 12; 134(24): 2218-2222.
Pictured is the moderator for the International Myeloma Working Group Summit, which brought together dozens of myeloma experts online during August 2020.
INTERNATIONAL MYELOMA WORKING GROUP’S MILESTONES IN 2020 The IMF hosted the 11th Annual International Myeloma Working Group (IMWG) Summit virtually on August 25-26, 2020. Even though it was held online, the Summit convened the world’s top myeloma experts to review works in progress, set the agenda for future myeloma research projects, and learn from those who are exploring new frontiers in the biology and/or treatment of this disease. Professor Kàri Stefànsson, Founder and CEO of deCODE Genetics in Reykjavík, Iceland, gave the keynote address—a lecture on population genetics. Prof. Stefànsson helped the audience understand the origin and impact of individual gene mutations on disease predisposition. Many other leading myeloma experts presented plenary lectures, covering such topics as frontline therapy, the role of minimal residual disease as an endpoint, immune therapies, and more. Other highlights from the Summit included the presentation of the IMF’s 19th Annual Robert A. Kyle Lifetime Achievement Award to Prof. Thierry Facon (University of Lille — France). This award honors an individual whose body of work has made significant contributions to myeloma research and patient care. The Brian G.M. Durie Outstanding Achievement Award, recognizing excellence in myeloma research, was awarded to Dr. Wee Joo Chng (Yong Loo Lin School of Medicine, NUS and National University Cancer Institute, NUHS — Singapore). As is tradition with the Summit, the myeloma experts break out into working group committees.
Highlights from the IMWG Summit Working Group reports included: • The role of mass spectrometry, a very sensitive blood-test technology, was summarized. Mass spectrometry will hopefully revolutionize both diagnostic testing and response monitoring in the future. • The new criteria for identification of high-risk smoldering myeloma, or the 2/20/20 model, was discussed. • Planned projects and studies by the Immune Therapy Committee were endorsed. • Plans and accomplishments of the Bone Committee were recognized as well.
IMWG PUBLICATIONS In 2020 Mateos MV, et al. International Myeloma Working Group risk stratification model for smoldering multiple myeloma (SMM). Blood Cancer J. 2020 Oct; 10(10): 102. Upcoming in 2021 Moreau P, et al. Treatment of relapsed and refractory multiple myeloma: recommendations from the International Myeloma Working Group. Murray D, et al. Mass spectrometry for the evaluation of monoclonal proteins in multiple myeloma and related disorders: an International Myeloma Working Group Mass Spectrometry Committee Report. Terpos E, et al. Treatment of multiple myeloma-related bone disease: recommendations from the Bone Working Group of the International Myeloma Working Group.
2020 IN REVIEW
The Asian Myeloma Network team came together for their annual summit in Bangkok, Thailand, in late October 2019.
ASIAN MYELOMA NETWORK ANNUAL SUMMIT IS A SUCCESS Asia is home to the greatest number of myeloma patients in the world. Unfortunately, despite some recent advances, access to the newest myeloma treatments continues to be limited in the Asian region. Delays in government approval processes as well as insufficient insurance and healthcare contribute to these access limitations. The mission of IMF’s Asian Myeloma Network (AMN) is to provide a platform for Asian experts to discuss shared challenges and to work together to enhance patient support in the Asian region. The third annual Asian Myeloma Network Summit was held in Bangkok from October 25-27, 2019, focusing on priorities for action in the region. The meeting, by-invitation-only, limited participants to allow for discussions in a workshop setting. At the Summit, 120 myeloma experts from China, Hong Kong, Taiwan, Japan, Korea, Malaysia, Singapore, and Thailand took part. They discussed developments in myeloma science and its impact on diagnosis and treatment in Asia. IMF Chairman of the Board Dr. Brian G.M. Durie and many international experts led beneficial presentations and workshops for all. The five subjects of the AMN Summit were: •
1) Developments in CAR T-cell therapy, led by Juan Du, MD (Shanghai Changzheng Hospital — Shanghai) and Thomas G. Martin, MD (University of California —San Francisco) 2) MRD Assessment, led by Wenming Chen, PhD (University of Melbourne — Melbourne), Jae Hoon Lee, MD (Gachon University — Incheon, South Korea), and Alberto Orfao, MD (University of Salamanca — Salamanca, Spain)
3) Treatment of High-Risk Patients, led by Kihyun Kim, MD, PhD (Sungkyunkwan University — Seoul, South Korea); and IMF Chairman of the Board Brian G.M. Durie, MD
4) Asian Tissue Bank led by Wee Joo Chng, MD (National University Cancer Institute — Singapore), and Jean-Luc Harousseau, MD (University of Nantes — Nantes, France).
5) Patient Support in Asia, led by Daryl Tan, MD (Mount Elizabeth Hospital — Singapore) and Kazuyuki Shimizu, MD, PhD (East Nagoya Hospital — Nagoya, Japan).
IMF’s Asian-wide clinical trial initiative, led by Dr. Wee Joo Chng, was a major focus of AMN. Dr. Chng reported to the Summit on successful AMN trials. These trials have been useful in getting novel agents to Asian patients while providing valuable research. Discussions during the Summit raised proposals for new AMN clinical trial projects, including potential studies involving CAR T-cell therapy. Participants also discussed the expansion of the AMN database and increasing physician education, including developing an Asian “IMF Master Class.” The Summit also benefited from partner support including Amgen, Celgene, Janssen, and Sanofi (platinum sponsors); Binding Site (gold sponsor); and AbbVie, BeiGene, CARSgen, and Takeda (silver sponsors).
UPDATE ON AMN CLINICAL TRIALS •
AMN001 concluded this year. It was an access program that enrolled 136 relapsed myeloma patients who had previous exposure to bortezomib and lenalidomide, and were later 9
IMF RESEARCH 2020 AMN Article Continued
2020 BRIAN D. NOVIS RESEARCH GRANT AWARDS The International Myeloma Foundation (IMF) presented its 2020 Research Grant awards in December 2019 in Orlando, Florida.
Senior Grant Recipients
Senior Research Grant projects are funded at $80,000.
Asian Myeloma Network members Drs. Wee Joo Chng and Wen-ming Chen.
treated with pomalidomide (pom) and dexamethasone (dex). The data demonstrated high response rates. Its findings were published in Blood Cancer Journal. AMN002, a randomized phase II study, was also completed this year. It used different doses of carfilzomib with cyclophosphamide and dex for relapsed/refractory myeloma patients who had prior exposure to bortezomib. The project involved 41 patients in Asia and 50 patients in Australia and New Zealand. AMN003 is an ongoing randomized phase III study comparing the combination of pomalidomide (pom), cyclophosphamide, and dex to the combination of pom and dex in relapsed or refractory myeloma patients. The project is ongoing and will involve up to 120 patients in Asia. AMN004 is a phase II study examining the use of daratumumab (dara) in combination with thalidomide and dex in patients with relapsed and/or refractory myeloma. This study is ongoing and involves 70 patients in Asia. AMN006 is a phase II study initiated in 2019 that will consider the use of daratumumab in combination with bortezomib and dex in newly diagnosed, transplant-ineligible patients. This study will involve 63 patients in Asia. Additional AMN clinical trial projects are currently being negotiated with implementation scheduled to begin in early 2021.
MORE AMN ACTIVITIES • • • •
AMN Treatment Guidelines for Asia were updated and published in Oncology. Physician training seminars were held in Shanghai and Beijing, China. The Black Swan Research Initiative® minimal residual disease projects continued in China and Japan. AMN held member Patient Seminars in China, Hong Kong, Taiwan, Korea, and Singapore.
Sylvie Hermouet, MD, PhD
Sylvie Hermouet, MD, PhD CRCINA Inserm U1232 | Centre de Recherche en Cancérologie et Immunologie | NantesAngers | Nantes, France Functional characterization of monoclonal immunoglobulins from antigen-driven MGUS and myeloma Funded by the 7th Annual Miracles for Myeloma 5K Mikhail Nikiforov, PhD Wake Forest University Health Services | Cancer Biology | Winston-Salem, NC, USA Leveraging polyamine dependency for treatment of drug-resistant multiple myelomas Funded by Laughs 4 Life
Mikhail Nikiforov, PhD
Junior Grant Recipients
Junior Research Grant projects are funded at $50,000.
Francesco Maura, MD
Francesco Maura, MD Memorial Sloan Kettering Cancer Center | Medicine | New York, NY, USA Deciphering the impact of melphalan on secondary malignancy in multiple myeloma Funded by the 12th Annual Miles for Myeloma 5K
Kim De Veirman, PhD
Kim De Veirman, PhD Vrije Universiteit Brussel | Hematology and Immunology, Myeloma Center Brussels | Brussels, Belgium Targeting AXL, a putative dormancy regulator in multiple myeloma Funded by the 12th Annual Miles for Myeloma 5K
Alexandre Detappe, PhD
Alexandre Detappe, PhD Centre Paul Strauss / Université de Strasbourg Medical Oncology | Strasbourg, France A ‘click-ready’ cereblon E3 ligase modulation drug library for fast in vivo evaluation in multiple myeloma mouse evaluations Funded by Dr. Christopher Meier — Flying Pig Marathon
The Global Myeloma Action Network met in person at the American Society of Hematology annual conference in December 2019.
GLOBAL MYELOMA ACTION NETWORK The IMF’s Global Myeloma Action Network (GMAN) brings together advocacy leaders in multiple myeloma and blood cancers to improve the lives of patients around the world. In fiscal year 2020, GMAN held a member meeting during the American Society of Hematology (ASH) annual congress. The countries and regions of Australia, Canada, Latin America, Turkey, and the U.S. as well as GMAN’s industry partners were in attendance. GMAN members gained knowledge about the latest advances in myeloma and engaged with disease experts. Of note, Myeloma Australia presented on tracking of data of newly diagnosed patients. Also, the Czech Republic, Croatia, and Norway reported on best practices for different projects.
The annual GMAN Summit was held virtually from September 23–24, 2020. Forty advocates from 5 continents and 31 countries attended. This year’s theme was “Myeloma More on Digital.” IMF’s Director of GMAN and of European & Middle Eastern Patient Programs, Serdar Erdogan, summarized IMF and GMAN’s digital events. •
• Mimi Choon-Quinones (IMF Senior Vice President, Global Advocacy, Access, Policy, & Research) emphasized the importance of clinical trials and of the support industry partners provide to global myeloma communities. In closing, the GMAN team shared a salute to the late Aldo Del Col, the cofounder of Myeloma Canada, IMF Board Member, and GMAN Member. In February 2020, before the COVID-19 pandemic, IMF President and CEO Susie Durie and IMF Chairman of the Board Dr. Brian G.M. Durie visited Turkey and participated in the 13th New Trends in Hematology Congress in Istanbul. Dr. Durie presented a lecture at Koç University Hospital discussing minimal residual disease (MRD, the small numbers of malignant cells that remain in a person after treatment), ongoing “Cure” trials by the IMF, and new potential therapies. In March of 2020, along with most of the world, countries of Europe established social distancing measures due to the pandemic. IMF activities in Europe were rescheduled as virtual events in 2020. Also Dr. Durie’s informative blog articles and “Ask Dr. Durie” videos discussing COVID-19 were translated into Arabic, Dutch, French, German, Italian, Spanish, and Russian.
Dr. Brian G.M. Durie (IMF Chairman of the Board) updated the attendees about the IMF’s Black Swan Research Initiative® and future myeloma therapies beyond 2020. He also discussed COVID-19 safety for myeloma patients. Susie Durie (IMF President and CEO) and Robin Tuohy (IMF Vice President, Support Groups) shared their experiences for caregivers, focusing on the difficulties of the pandemic. Dr. Joseph Mikhael (IMF Chief Medical Officer) provided updates from virtual ASCO and EHA summaries. Mimi Choon-Quinones (IMF Senior Vice President, Global Advocacy, Access, Policy & Research) presented a five-year plan for the Beyond Medicines’ Barriers Program with a goal of improving global access to care. GMAN members from Australia and Denmark, as well as Dr. Daryl Tan from Singapore provided best practices. Members from Australia explained their nurse-led services and core programs for patients. Denmark members shared their survey that led to an awareness campaign targeting general practitioners to improve early detection. Dr. Tan from The Asian Myeloma Network (AMN) explained his methodology of developing a resource-stratified treatment guideline to improve the quality of myeloma care.
One of the biggest highlights of the Summit was naming the recipients of 2020 Susie Novis Durie Grant. Armenia was awarded for creating a website for patients and awareness day activities, Romania for establishing an online platform for telemedicine, and Argentina for operating a safe and hygienic transportation service for patients to hospitals.
Pictured here in the summer of 2019, the IMF Nurse Leadership Board is made up of myeloma nursing experts from major centers where myeloma is treated.
IMF NURSE LEADERSHIP BOARD ADAPTS IN FISCAL YEAR 2020 The IMF Nurse Leadership Board® (NLB) consists of nurse experts from leading medical centers caring for myeloma patients who collaborate to improve the lives of myeloma patients. Due to the pandemic, the NLB reimagined many programs in 2020, adapting in-person events to virtual programming. The NLB’s 2020 Oncology Nursing Society (ONS) Satellite Symposium, “New Strategies for Multiple Myeloma Care: Case Studies for Nurses,” was led by co-chairs Beth Faiman, PhD, RN, MSN, APRN-BC, AOCN, FAAN (Cleveland Clinic — Taussig Cancer Institute) and Joseph Tariman, PhD, RN, ANP-BC, FAAN (DePaul University — Chicago) as well as faculty members Amy Pierre, RN, MSN, ANP-BC (Memorial Sloan Kettering Cancer Center — Montvale, NJ) and Tiffany Richards, PhD, ANP-BC (MD Anderson Cancer Center — Houston). They used real-life patient case scenarios on symptom management, infection control, and nursing implications. The newest treatments were addressed, meeting a critical need for nurses during this difficult time. The symposium was highlighted as part of ONS Bridge and offered 1.5 CE through August 2021. This fiscal year, NLB members served as faculty at IMF education forums, including 2 Patient & Family Webinars, 5 IMF Regional Community Workshops, and 17 virtual support group presentations, reaching 7,000 attendees. The NLB faculty participated at the Support Group Leaders Summit, attended ASH with the Support
Group Leaders, and conducted numerous roundtables with patients and professionals with the objective of improving care and quality of life for myeloma patients. A “Living Well with Myeloma” webinar on “Multiple Myeloma Patient Safety and the Coronavirus,” was co-led by Dr. Beth Faiman in April. Beth Faiman, PhD, RN, MSN, APRN- BC, AOCN, FAAN (Cleveland Clinic — Taussig Cancer Institute); Kim Noonan, RN, ANP, AOCN, DNP (DanaFarber Cancer Institute — Boston); and Charise Gleason MSN, NP-BC, AOCNP (Winship Cancer Institute, Emory University — Atlanta) were contributing authors on a consensus paper on selinexor treatment along with IMWG members, while Amy Pierre RN, MSN, ANP-BC, published “African American Patients with Myeloma” in collaboration with IMF support group leader Tiffany Williams in the Clinical Journal of Oncology Nursing. Finally, travel restrictions could not deter the important work of the NLB. At their sixteenth annual meeting, held virtually in September, the NLB celebrated the upcoming launch of Myeloma University, an education program that delivers nurse education on myeloma in simple and concise modules via an app. The group created tip sheets for patients on topics including telehealth and infection control, developed educational case studies, and updated their patient education decks, unveiling their new “Galactic Journey”-themed deck at the 2020 October Regional Community Workshop.
PATIENTS THE IMF AND MYELOMA COMMUNITY SHINE AS RESILIENT MYELOMA WARRIORS IN 2020 Despite a pandemic, the International Myeloma Foundation and the myeloma community thrived in 2020. We continued to connect in online settings, from patients supporting patients, to leading myeloma experts sharing knowledge, to caregivers and advocates virtually meeting, and more. Here are some of the ways you made 2020 a success: The Regional Community Workshops (RCW) team quickly transitioned their in-person gatherings to region-specific webinars. IMF’s Senior Director of Regional Community Workshops, Kelly Cox, looked back upon these Herculean efforts and said, “VIRTUAL, VIRTUAL, VIRTUAL: ZOOM, ZOOM, ZOOM!!! These calls are essential for the groups on an ongoing basis. Personally, I’ve learned so much about people that I did not know. I found that connecting virtually was a great way to understand the IMF’s role in reaching out to patients where they are at.”
Through perseverance, the IMF Support Group team presented at more than 500 virtual local group meetings during the last fiscal year — that’s at a rapid pace of more than one virtual support group visit per day! They also conducted an all-virtual Summit, bringing together more than 100 support group leaders. Also in 2021, the IMF launched the following page: https://www. myeloma.org/covid19-myeloma-patients on our website. As Dr. Durie said, “Myeloma patients have compromised immune systems and are highly vulnerable to new infections.” For this reason, Dr. Durie and team created up-to-the-minute blogs, FAQs, and videos for myeloma patients to stay safe, all housed at the link above. Always quick to respond, the IMF InfoLine’s team kept abreast of the latest news about the treatment and management of myeloma as well as COVID-19 concerns. Of note, the team received record-high call and email volumes this past fiscal year. They continued to stick to their signature service: providing the best information about multiple myeloma in a caring and compassionate manner. Finally, IMF researchers, healthcare professionals, and global advocates continued to collaborate online and maintain their work to find a cure. Some examples include: The 11th annual summit of the IMF’s International Myeloma Working Group (IMWG) met virtually, using an innovative platform that allowed 60 myeloma experts to participate and have two-, three-, and four-way conversations. (Learn more on page 8). The IMF’s Nurse Leadership Board (NLB) held its 16th annual meeting online in September, breaking into workgroup sessions to focus on updating patient resources. (Learn more on page 12).
The Sante Fe Land of Enchantment Myeloma Support Group met online.
Not only did the RCWs continue to convene virtually, Patient & Family Seminars became Webinars. Also, the IMF’s signature “Living Well with Myeloma” webinars garnered larger audiences than ever before. In the U.S. alone, the reach of these two types of programming connected with more than 30,000 viewers online. Also, in Europe, more than 3,500 people met virtually in Patient & Family Webinars focused on different regions of the continent. At a very local level, support groups thrived. As IMF Vice President of Support Groups, Robin Tuohy, said, “The IMF recommended that March meetings be cancelled. By April, we had a plan in place to sustain support groups virtually and secured GoToMeeting licenses for all leaders to use to conduct their meetings in a virtual setting. This enabled members to stay safe by being physically distanced, but to remain socially engaged and informed. The connections made and the information shared was key to patient and caregiver resilience, empowerment, and hope.”
The IMF’s Global Myeloma Action Network (GMAN) held its annual summit, usually scheduled for June, online in September 2020. It was attended by nearly 40 advocates, representing myeloma organizations from 5 continents and 31 countries. (Learn more on page 11). In short, amid a year of uncertainty, the IMF and the myeloma community came together as “One Myeloma Nation” in 2020, showing that we are truly resilient Myeloma Warriors.
JOIN THE MOVEMENT TO HELP FIND A CURE
TAKE The team called for an out-of-pocket cap for Medicare recipients. In the traditional Medicare program, there is no annual dollar limit for out-of-pocket expenses. If a Medicare Out-Of-Pocket Cap is implemented, Medicare patients would have a yearly limit on their out-of-pocket drug expenses.
Robin Roland Levy, IMF Senior Director, Public Policy & Advocacy
Danielle Doheny, IMF Director, Public Policy & Advocacy
IMF ADVOCACY INFLUENCES REGULATORY MATTERS, LEGISLATION, AND RESEARCH FUNDING The IMF, through individual comments and coalition efforts, sent numerous letters to legislators on policy proposals that may impact the myeloma community. These comments were in response to proposed federal government rules and the President’s executive orders. One of those rules was the Centers for Medicare and Medicaid Services (CMS) inpatient prospective payment system (IPPS). The IMF’s collaborative advocacy work resulted in the creation of a MS-DRG (diagnostic code) for CAR T-cell therapies. Also, the advocacy team ensured the myeloma community’s interests were heard during COVID19 negotiations, including those for oral parity and telehealth.
To improve patient access to oral chemotherapy drugs, the IMF Advocacy team endorsed H.R. 1730/S. 741, The Cancer Drug Parity Act. This legislation will prevent insurers from imposing higher cost-sharing for orally administered drugs versus intravenous (IV) therapies. Because of COVID-19, this bill gained more importance since some patients were transitioned onto oral drugs when medically appropriate. Other legislation endorsed by the IMF includes: • H.R. 913*, The Clinical Treatment Act: This bill would improve access to clinical trials for patients with Medicaid. • H.R. 1966*, The Henrietta Lacks Enhancing Cancer Research Act: This bill would require a study to be performed about barriers that exist for patients who are underrepresented in clinical trials. • H.R. 7647, The Preserving Patient Savings on Drug Costs Act: This bill ensures patients aren’t faced with the financial burdens that stem from co-pay accumulator programs. These programs prevent manufacturer assistance from being counted towards a patient’s yearly out-of-pocket limit. *signed into law The IMF, in collaboration with various coalitions, advocated to increase funding for the National Institutes of Health, the National Cancer Institute, and the Food & Drug Administration, helping scientific progress and bringing new therapies to patients more quickly.
VAM successfully recommended consumer reviewers to the PRCRP’s myeloma panel. This action gave patients and caregivers the opportunity to decide which research gets funded.
VETERANS AGAINST MYELOMA REPORT In 2020, the IMF’s Veterans Against Myeloma (VAM) program focused on making sure multiple myeloma remains recognized as a serviceconnected disease and launched a new firefighters initiative. VAM ensured myeloma researchers are able to apply for grants through the Peer Reviewed Cancer Research Program (PRCRP) within the Congressionally Directed Medical Research Programs (CDMRP). The PRCRP is a program through the Department of Defense. It allows researchers to apply for grant funding researching diseases specified by Congress. Each year, the IMF meets with relevant offices on Capitol Hill to guarantee that blood cancers remain as a topic area for research. 16
On January 1, 2020, the Blue Water Navy Vietnam Veterans Act took effect. This law restored the presumption of Agent Orange exposure to an estimated 60,000 veterans who served within 12 nautical miles off the coast of Vietnam during the Vietnam War. It also makes it easier for this population to receive care and benefits from the VA. Myeloma has been directly linked to Agent Orange exposure. The IMF Advocacy team worked for the law’s passage and continues to monitor its implementation. Other VAM initiatives include revising the Guide to Benefits for veterans, supporting burn pit registry legislation, and advocating for legislation that would help military and civilian firefighters access benefits.
ACTION MEMBER FUNraisers ANTI-CANCER TRIVIA NIGHT / MAY 5, 2020 For the third year, comedians teamed up for an Anti-Cancer Trivia Night. The pandemic didn’t stop them. In 2020, they brought the audience online using Twitch!
JULIE’S COUNTRY TO TOWN BIKE RIDE FOR A CURE / MAY 30, 2020 Cyclist in the event, Mike Wolniewicz, waits outside one of the stops on the Bike Ride for a Cure.
Organizers: Josephine McAdam, Forrest Shaw, Francisco Ramos, and Andy Ostroff
Organizers: James and Julie Tuttle
MIRACLES FOR MYELOMA VIRTUAL 5K WALK/RUN / SEPTEMBER 26, 2020
IMF SUMMER CAMP / SUMMER 2020
Ron and Sheree Pask proudly hold a Miracles for Myeloma sign with their sons Matt Pask and Matt Ripa, and their twin girls Maci and Madison.
Organizers: Ron and Sheree Pask, Gina Klemm
IMF Staff Members challenged their co-workers to organize walks, runs, and more to raise money for the organization as part of IMF Summer Camp.
Organizers: Karla Lemus, Sarah Solomon, Joy Riznikove
TAKE DONOR SPOTLIGHT
Kirsten and Dave Clark posed for a holiday photo in their home.
FINGERPRINTS ON THE FUTURE OF MYELOMA CARE Dave Clark is a model of resilience. Having lived with four cancers, he maintains a positive outlook and is his own advocate. In 1996, Dave was diagnosed with non-Hodgkin’s lymphoma (NHL). He underwent radiation at the Mayo Clinic in Rochester, Minnesota. While he was at the Mayo Clinic, Dave recalls, “There were kids coming in for radiation at that time, and a lot of the kids were in rough shape. I was in my forties and had a healthy life to this point. I could see the young kids coming in and playing. I just kind of knew then that I was blessed. That put me on a positive and optimistic path with my cancer.” Dave’s doctor at the time was S. Vincent Rajkumar, MD, now a member of the IMF’s International Myeloma Working Group. He remained Dave’s doctor for a long time. After 14 years, Dave was declared cured from the non-Hodgkin’s lymphoma. When Dave was being screened for NHL, he also got screened for myeloma. After two subsequent screenings, Dave was diagnosed with smoldering myeloma in 2010. Dave decided to retire that year, leaving behind his successful food engineering company in La Crosse, Wisconsin, and moving to Phoenix, Arizona, with his wife. Dr. Rajkumar connected Dave with Dr. Joseph 18
Mikhael. At the time, Dr. Mikhael was a practicing myeloma specialist at the Mayo Clinic in Scottsdale, Arizona. Dave remembers Dr. Mikhael’s original myeloma prognosis. “Dr. Joe” told Dave, “We can get you probably five to ten years. There are things on the horizon that might go farther; but for now, we feel comfortable in telling you we can get you some time.” In 2012, Dave underwent an autologous stem cell transplant, but he only experienced a short eight-month remission. Unfortunately, in 2014, Dave also faced melanoma. Luckily, the malignant melanoma on his leg was extracted and he fully recovered from it. In 2016, a tumor was spotted in Dave’s lung, and initially it was considered benign. Then, a year later, the classification standards for the tumor changed and it was considered malignant. To participate in clinical trials, patients need to be free from other cancers. As a result, Dave was not able to enroll in a clinical trial. Dave’s myeloma progressed, leading to bone damage. He remembers, “It was starting to get pretty bleak. Dr. Mikhael, now a member of the IMF, knew what studies were going on. He was kind enough to introduce me to some hospitals—one being the City of Hope. He introduced me to Dr. Amrita Krishnan, whose team was conducting CAR T-cell testing.” The study was a great fit except for one caveat: The study required patients who only had reoccurrence or a continuation of myeloma alone. Because of Dave’s lung tumor, he had to wait four more months to be eligible. To maintain Dave’s eligibility for the study in the future, his
ACTION This was in April of 2019. In December 2020, Dave had another bone marrow biopsy, showing no further progression or return of the myeloma. The International Myeloma Foundation is fortunate that patients like Dave cross paths with the organization. In 2018, Dr. Joseph Mikhael was appointed Chief Medical Officer of the IMF. He and Dave remain friends to this day. In fact, Dave first attended the IMF’s Comedy Celebration in 2018 in Los Angeles to reconnect with Dr. Mikhael, and the two sat together at the event. Laughter is essential and that night, the two got their fill from some of the top comedians in the country.
Dr. Joseph Mikhael and Dave Clark at the Silverleaf Country Club in Scottsdale, Arizona.
healthcare team treated him with a new bispecific agent for those four months. His myeloma continued to progress. He explained, “I now had many lesions in my bones. I also had a rapid-growing tumor on my skull.”
“I know Dr. Joe’s heart, and along with the entire IMF team, he is focused on finding a cure. They are focused on this not just for people in the U.S., but for people all around the world.“ The tumor was causing Dave’s vision to become blurry and other complications. His team at City of Hope pushed even harder to move Dave to a CAR T-cell study. While Dave’s healthcare team was at the City of Hope, Dr. Mikhael remained connected and also pushed for Dave entering the study. Dave couldn’t be more grateful for his team. He underwent CAR T-cell therapy and was in the hospital for six weeks. Over that time, the multiple myeloma in his system was practically eradicated, and Dave had a very low level of residual disease. The tumor in his skull dissipated.
The IMF is also grateful for Dave for his continual support and donations to the organization. When asked why he gives to the IMF, Dave said, “It wasn’t that long ago, the disease would be caught pretty late, and patients had fairly short life spans…Now, it’s been about two years that I’ve been basically cancer-free with a cancer that has a high mortality rate. The work the IMF does is really focused on many areas, besides helping people like me. It translates these findings around the world. It just makes a lot of sense. I’ve been living with this for 11 years now. The prognosis is not 1 or 2 years, nor 5 to 10 years anymore. A cure is very close, and I know the next advancements are going to come from people like Dr. Joseph Mikhael and organizations like the IMF.” Dave continued, “I know Dr. Joe’s heart, and along with the entire IMF team, he is focused on finding a cure. They are focused on this not just for people in the U.S., but for people all around the world. Joe talks about a vision for other countries to enjoy the same healthcare advancements in the U.S., especially in developing countries. This is a large part of what the IMF and Dr. Joe are personally pushing for. This is big stuff that cannot be done from one office or one country. You have to get out and communicate and see people, and that takes funding. These discoveries can translate into advancements for all cancers. And that’s what IMF is...It really is a conduit of pulling all the best people together to get the best results.” “I learned early on in my business career: communication is what works. Bad communication or no communication always delivers bad results. Good communication can turn into great things.” “Look at me,” Dave says, “The studies are successful. It’s those that have their fingers on the pulse of the studies that are doing the great work. The IMF is one of those organizations that pushes the needle forward. There are many people that I need to thank for the reason I’m still here. It’s a huge list, and I’ll never be able to thank them all. I do understand that to help others is what my family has to do—to pay it forward. Helping organizations like the IMF is our way to maybe make a modest impact. An impact my grandchildren and others’ grandchildren will hopefully benefit from.”
WAYS TO GIVE
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SUMMARY FINANCIAL INFORMATION INTERNATIONAL MYELOMA FOUNDATION
Statement of Financial Position September 30, 2020 ASSETS CURRENT ASSETS
Cash and cash equivalents $ Investments, at fair value Contributions, program grants, and other receivables Prepaid expenses Total Current Assets
4,172,849 8,904,793 2,946,166 789,875 16,813,683
Property and equipment, net Intangible assets, net Total Other Assets
LIABILITIES AND NET ASSETS LIABILITIES
Accounts payable and accrued expenses $ 210,909 Deferred program and educational grants 3,651,982 Refundable advances 4,056,750 Gift annuity obligation 74,738 TOTAL LIABILITIES
Without donor restrictions With donor restrictions TOTAL NET ASSETS TOTAL LIABILITIES AND NET ASSETS
For a copy of our complete audited financial statements, please contact the IMF office.
INTERNATIONAL MYELOMA FOUNDATION
Statement of Activities and Changes in Net Assets for the Year Ended September 30, 2020 Without Donor Restrictions
With Donor Restrictions
REVENUES AND SUPPORT Educational and program grants
Clinical trials and research revenue
Change in split interest agreements Support group income Fundraising events, net of direct benefit to donors of $358,440 Investment income, net of fees $44,705
Transfer to annuity assets Net assets released from restrictions TOTAL REVENUES AND SUPPORT
FUNCTIONAL EXPENSES Program expenses General supporting expenses Fundraising
TOTAL FUNCTIONAL EXPENSES
CHANGE IN NET ASSETS NET ASSETS - Beginning of year NET ASSETS - End of year
12,959,476 601,993 1,160,976 14,722,445 564,592
- 12,959,476 - 601,993 - 1,160,976 - 14,722,445 (111,283) 453,309
* Percentages based upon detailed final trial balance. For a copy of our complete audited financial statements, please contact the IMF office.
INTERNATIONAL MYELOMA FOUNDATION
Statement of Functional Expenses for the Year Ended September 30, 2020 Breakdown of Expenses by Program PROGRAM
Research Education and Awareness Support Groups International Nurse Advocacy Patient and Family Seminars Website InfoLine Myeloma Today Clinical Meetings Information Mailings Total Program Expenses
$ 6,758,635 1,544,649 754,550 724,057 603,942 603,692 545,432 455,793 362,582 263,728 260,113 82,303 $ 12,959,476
Fundraising Expenses General Supporting Expenses Total Expenses
1,160,976 601,993 $ 14,722,445
For a copy of our complete audited financial statements, please contact the IMF office.
Improving Lives Finding the Cure® IMF International Headquarters
12650 Riverside Drive, Suite 206, North Hollywood, CA 91607, USA 1-800-452-2873 (U.S. & Canada) 1-818-487-7455 (Worldwide) TheIMF@myeloma.org | myeloma.org