24 minute read
Dana-Farber Cancer Institute
2021 Brian D. Novis Research Grant
IMF supports the innovative research by Dr. Eugenio Morelli of Dana-Farber Cancer Institute
By Susie Durie IMF President & CEO
In 1995, the IMF established the Brian D. Novis Research Grant program in memory of IMF co-founder and my late husband Brian D. Novis. For 25 years, these grants have been awarded annually to further research in all areas of myeloma in an effort to improve patient outcomes. To date, the IMF has funded 143 of the most promising projects in the field of myeloma, which have made contributions that bring us closer to fulfilling the IMF’s mission – a cure for myeloma. In January 2021, the IMF hosted an online event to award a junior grant to Dr. Eugenio Morelli and to thank Sheree and Ron Pask, and Gina Klemm, who organized the Miracles for Myeloma 5K event that is helping sponsor Dr. Morelli’s research. We were honored to be joined by Dr. Morelli and his mentor, Dr. Nikhil Munshi, the Pasks and their family, and Suzanne Battaglia and Ilana Kenville, who run the IMF’s Member Fundraising Program. IMF Chairman Dr. Brian G.M. Durie expressed how important it is for us to be able to continue to fund such important research projects. On behalf of the IMF, Dr. Durie presented the 2021 Brian D. Novis Research Grant to Dr. Morelli, a postdoctoral fellow at Dana-Farber Cancer Institute and Harvard Medical School. Dr. Morelli earned his medical degree and completed a clinical research fellowship in medical oncology at Magna Graecia University of Catanzaro, Italy. Under the mentorship of Dr. Pierfrancesco Tassone, he gained expertise in molecular biology and experimental therapeutics of myeloma, pioneering the use of primary miRNA therapeutics of human cancer. In 2017, Dr. Morelli joined Dr. Munshi’s lab at Dana-Farber Cancer Institute, where he found the perfect environment to pursue his scientific interests. Please see the sidebar to learn more about Dr. Morelli’s innovative project. Eight years ago, the Miracles for Myeloma 5K was started by organizers who had never fundraised before, and now their event is funding its eighth Brian D. Novis Research Grant, this time supported by proceeds from their first ever Virtual 5K held amid a global pandemic. What a bright light in a dark time! Sheree shared that holding a virtual 5K was no easy task. “But, when I was first diagnosed, I made a commitment to make a difference in the world of myeloma, and with the support of my husband Ron and our children, and our wonderful event organizing committee, we did it! Things might be different right now due to the pandemic, but our commitment to myeloma research and our hopes for the future remain constant.”
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Dr. Munshi added, “I believe that Dr. Morelli will find new ways of treating myeloma and probably lots of other cancers, and his work will set a trend for new directions. And people like Sheree and Ron Pask remind us of the urgency of our work and inspire us to reach for our target of finding a cure. Lastly, on behalf of my colleagues, I would like to say a special heartfelt thanks to Susie and Brian, who for so long have been doing such incredible work for myeloma at every angle.” As we wrapped up our online grant presentation, we shared a photo of Brian D. Novis, the visionary who co-founded the IMF in 1990 and the man this research program is named after. The aim of the Brian D. Novis Research Grant program has always been to bring us closer to a cure, and we are very grateful to all the people who help support this important work and to all the researchers whose innovative work will get us to the finish line. Brian Novis said, “One person can make a difference, but two can make a miracle.” His words continue to inspire. MT
Characterization of RROL-driven lipogenic signaling in multiple myeloma cells
Cellular ribonucleic acid (RNA) can serve as precursor for proteins or as effector molecule with active role in malignant transformation. Dr. Morelli and his team have discovered an RNA regulator of lipogenesis (RROL) that promotes the synthesis of lipids in myeloma cells. This unique approach to how myeloma cells grow and develop could result in new targeted ways to treat myeloma and improve the outcome for patients. The IMF’s Brian D. Novis Junior Research Grant program is proud to support this promising project, enabling Dr. Morelli to decode the molecular mechanism and biologic role of RROL in myeloma, and providing a significant boost to a rapid translation of these findings to the clinical setting.
Myeloma Support Group Leaders and Advocates Take Part in ASH 2020
By Robin Touhy IMF Vice President, Support Groups
The IMF has attended the Annual Meeting and Exposition of the American Society of Hematology (ASH) for many years, and we were “there” for the first virtual experience of the 62nd annual event in December 2020. Despite the unprecedented consequences of the COVID-19 pandemic, ASH 2020 brought together thousands of clinicians and researchers, including those who are doing important work in the field of myeloma. Myeloma news presented at ASH is important not only to researchers and clinicians, but also to the myeloma patient community. This is why the IMF’s ASH Team always includes patient leaders and advocates who then share with the myeloma community at large the latest information about myeloma research, therapies, and practice strategies. I would like to express my personal thanks to Dr. Brian G.M. Durie and Susie Durie, and to the IMF’s industry partners who supported the attendance of myeloma advocates at ASH: Bristol Myers Squibb, Janssen, Karyopharm Therapeutics, and Takeda Oncology. In closing, I invite you to read the articles by Dr. Brian G.M. Durie (see pages 8-10 of this edition of Myeloma Today), in which he writes about key clinical and scientific updates in myeloma. In addition, I would like to share with you the following insights from the support group leaders and advocates who represented the myeloma community and the IMF’s ASH Team:
Jack Aiello Sheri Baker
Diagnosed with myeloma in 1995, Jack has attended ASH for 15 years. He is a facilitator of the San Francisco Bay Area Myeloma Support Group and a member of the IMF’s Global Myeloma Action Network (GMAN). “There is no other single conference where so much information is presented about myeloma. I’m grateful to the IMF and their sponsors for registering me to attend… even from my home-office PC. Actually, one of the benefits of attending ASH virtually was to hear presentations that would be scheduled at the same time at an in-person meeting, and you’d need to make a decision which to attend. The virtual platform worked out well, though I did miss connecting face-to-face with others.” Sheri was diagnosed with myeloma in 2011. In 2017, she started the Treasure Valley Multiple Myeloma Support Group in Boise, ID. In 2019, Sheri attended her first ASH meeting with the IMF. “There are so many options for patients now, and we are lucky to have researchers working hard to find treatments and, ultimately, a cure. The results from clinical trials give myeloma patients hope for the future, hope that we will see our children grow up and get married. Hope that we will become grandparents and that we will live long enough to enjoy retirement. I thank the IMF for allowing me the opportunity to attend ASH and I thank the pharmaceutical companies that support the IMF. I hope we will be able to meet in person next time.”
SG LEADERS & ADVOCATES AT ASH – CONTINUED FROM PREVIOUS PAGE
Yelak Biru
Yelak was diagnosed with stage III myeloma at age 25. Two decades later, he continues to successfully integrate myeloma into his life. Yelak is a member of the IMF’s Global Myeloma Action Network (GMAN) and an advocate for people with myeloma the world over. “ASH is a premier conference where myeloma clinical trials that can change the approach to treatment are presented. This time, the virtual format allowed us to log in from the comfort of our home, and rewind and replay as needed. The discussions were really outstanding. Recently approved drugs are revolutionizing the treatment outcomes for myeloma patients.”
Cindy Chmielewski
A retired teacher, Cindy now educates a new group of “students” – myeloma patients and caregivers. She is @MyelomaTeacher on Twitter and the patient advocate on the Myeloma Steering Committee of the NCI’s Clinical Trial Network. She serves on the steering committee of the Philadelphia Multiple Myeloma Networking Group. “I am honored to have attended ASH for nine years with the IMF, thanks to the generosity of our industry sponsors. The IMF understands the importance of education and the value of including the patient perspective at scientific meetings. Much of what I heard at ASH provided me with hope. Many new things are on the horizon!”
John DeFlice, MD
A 10-year myeloma survivor, Dr. DeFlice is a co-leader of the myeloma support group in Santa Fe, NM. He has attended ASH with the IMF for four years. “The virtual iteration of ASH was a unique experience. One of the silver linings was the option to watch presentations live and then watch them again on replay. Every year we not only anticipate better treatments for myeloma but we also come to find new sources of hope, and this time the exciting immunotherapy developments for myeloma were the highlight of the meeting.”
Linda Huguelet
Diagnosed with myeloma in 2010 at age 46, Linda co-leads the Chattanooga Multiple Myeloma Networking Group alongside her husband. She has attended ASH with the IMF for eight years. “I’m encouraged by the number of new myeloma therapies and therapy targets. The myeloma treatment landscape continues to evolve and get more complicated. In this case, complicated is a good thing because it means more options for us to tackle our ever-evolving myeloma.”
Teresa Miceli, RN
A 28-year nurse veteran, Teresa is recognized for her extensive experience in autologous and allogeneic transplantation. She is a member of the IMF’s Nurse Leadership Board and is the facilitator of the Multiple Myeloma Sharing Sessions in Rochester, MN. “Presenters shared specific details of patients who participated in their clinical trials. This personal investment is what drives them to continue the important work towards curing myeloma.”
Jim Omel, MD
A retired Family Practice physician who was diagnosed with myeloma in 1997, Dr. Omel’s advocacy has included the NCI Myeloma Steering Committee, peer review and the NCI Director’s Board of Scientific Advisors, FDA Patient Representative, Alliance Cooperative Group Myeloma and Transplant Committees, CIBMTR, ASCO, NCCN Myeloma Guidelines reviewer, and 20 years leading the Central Nebraska Myeloma Support Group. “One of my main interests is how myeloma experts approach sequencing of treatments for patients. The burgeoning number of choices includes approximately 190 different doublets and 1,140 different triplet combinations, and these numbers will grow in 2021 as new drugs and approaches come to market.”
Valarie Traynham
Diagnosed in 2015, Valarie has rallied to educate, inspire, and empower other myeloma patients and caregivers. She is facilitator for the myeloma support group in Aurora, IL. “The virtual ASH platform enabled me to listen to many of the 500 plus poster abstracts presented on myeloma. This is a lot more than I would have been able to do in the in-person setting. But whether in person or virtually, attending ASH is an invaluable learning experience and I am thankful to be able to have been a part of it.”
Michael Tuohy
Michael was diagnosed in 2000 at age 36. In 2001, with the help of the IMF, he and his wife Robin started the Connecticut Multiple Myeloma Fighters Information Group, the first myeloma support in the state. “I am a 21-year survivor of myeloma, and I am deeply grateful to all the myeloma experts who help us navigate through the complexities of individualized treatment. During one of our ASH support group leader meetings, our friend Jim Omel commented that it’s a blending of art and science. This is why myeloma patients need to see myeloma specialists. After attending the virtual ASH, virtual support group meetings, and virtual Patient & Family Seminars, it will be nice to see everyone in person when this pandemic is over. Until then, I wish you good health!”
Tiffany Williams
Diagnosed with myeloma in 2013, Tiffany is the facilitator of the Multiple Myeloma Network for Orangeburg and a co-facilitator of the Charleston Area Multiple Myeloma Networking Group. “Attending ASH as part of the IMF Social Media Team is a privilege. As in previous years, my mission was to offer hope by sharing my experience. The overall message that resonated for me was, we are inching closer and closer to a cure! Until then, myeloma has more treatment options now than ever before, and it is my hope that all patients benefit from those therapies and advances in care.” MT
M-Power Charlotte is Changing the Face of Myeloma #WHEREISDRJOE
By Dr. Joseph Mikhael IMF Chief Medical Officer
As discussed in my last column in Myeloma Today on Diversity, Equity, and Inclusion, the IMF is deeply committed to all patients with myeloma. The four pillars of the IMF – Research, Education, Support, and Advocacy – are the framework for all our efforts, including our commitment to reducing disparities in the myeloma community. The IMF has developed and launched the M-Power program to help empower individuals and communities to change the course of myeloma. This does, of course, imply that the current course of myeloma needs change. And indeed it does. Although we have made tremendous strides in the fight to cure this disease, as highlighted in the great work of the IMF’s Black Swan Research Initiative®, patient outcomes in myeloma remain unacceptable in many communities. The M-Power program – the “M” stands for myeloma – serves all who have been touched by this disease: communities, patients, caregivers, hematologists/oncologists, primary care doctors, nurses, and other healthcare professionals. M-Power is a longterm strategy for changing the course of myeloma in multiple geographic, racial, and socio-economic communities. The IMF has joined forces with Atrium Health Levine Cancer Institute’s Disparities & Outreach program to empower people in the Charlotte, North Carolina area to help remove barriers to care and improve both the short- and long-term outcomes of African-American patients with myeloma. In collaboration with Atrium Health and the Levine Cancer Institute, the IMF developed the following three-part program:
PART 1: Engagement and empowerment
Phase one of the M-Power program is an awareness campaign within the African-American community, both the medical and the non-medical. We are educating individuals about myeloma by multiple means to better understand the disease. We are demystifying the disease and encouraging people to seek medical help if they may have signs or symptoms consistent with myeloma. Furthermore, it will advocate for greater support of myeloma patients and their families as they face this disease by connecting them to the resources of the IMF and Atrium Health.
PART 2: Primary care education
The majority of myeloma patients are diagnosed by a primary care physician. However, the diagnosis of myeloma is often delayed in African-Americans when compared to Caucasians. A targeted education campaign directed at primary care physicians encourages a more accurate and timely diagnosis of myeloma. After the diagnosis is made, myeloma patients can then receive their optimal care from a hematologist/oncologist.
PART 3: MGUS screening program
Although we know the incidence of monoclonal gammopathy of undetermined significance (MGUS) and myeloma is more than twice as common in people of African descent as in whites, little is known of the natural history of MGUS in black patients. Led by the myeloma physicians at the Levine Cancer Institute, the large-scale screening study is known as CHAAMP (CHarlotte African-American MGUS Project). We seek to screen 20,000 African-American individuals in the greater Charlotte area, with close follow-up of those identified as having MGUS. On March 20, the IMF held the first M-Power event in the AfricanAmerican community in the Charlotte, North Carolina region to educate people familiar and unfamiliar with myeloma about the disease, how the disease affects the African-American community, its optimal management and the importance of the patient voice and communication with the healthcare team.
This free, interactive online event featured multiple sessions, from “Myeloma for Patients Who Are Just Getting Started” to the latest in treatments and research. The comprehensive program also included a myeloma patient’s story and an opportunity for the audience to ask questions. We look forward to working with other communities nationwide as we seek to eliminate the disparities that are so prolific in myeloma. Please visit our website to watch a replay of the M-Power workshop at m-powercharlotte.myeloma.org, explore the Myeloma Tool Kit, and then join the M-Power movement and help change the course of myeloma! MT
Important Facts about Myeloma and African-Americans
MGUS and myeloma are TWICE as common in African-Americans. There is a longer time to diagnosis from the onset of symptoms. Survival gains in myeloma over the past decade have not been seen in African-Americans to the same degree as in Caucasians. Although African-Americans comprise 20% of all MM patients, they represent only 8% of patients on clinical trials.
Kevin Brigle, PhD, NP
Massey Cancer Center Virginia Commonwealth University
Donna D. Catamero,
ANP-BC, OCN, CCRC
Myeloma Translational Research Mount Sinai Health System
Kathleen Colson, RN, BSN, BS
Dana-Farber Cancer Institute
Deborah Doss, RN, OCN
Dana-Farber Cancer Institute
Beth Faiman,
PhD, RN, MSN, APN-BC, AOCN®, FAAN Cleveland Clinic Taussig Cancer Institute
Charise Gleason, MSN, NP-C, AOCNP
Winship Cancer Institute of Emory University
Michaela Hillengass, RN*
Roswell Park Comprehensive Cancer Center
*German certified
Patricia A. Mangan,
RN, MSN, APRN-BC
Abramson Cancer Center University of Pennsylvania
Ann McNeill, RN, MSN, APN
John Theurer Cancer Center Hackensack University Medical Center
Teresa S. Miceli, RN, BSN, OCN
William von Liebig Transplant Center Mayo Clinic – Rochester
Kimberly Noonan,
DNP, ANP-BC, AOCN
Dana-Farber Cancer Institute
Amy E. Pierre, RN, MSN, ANP-BC
Memorial Sloan Kettering Cancer Center
Tiffany Richards,
PhD, ANP-BC, AOCNP®
MD Anderson Cancer Center
Sandra I. Rome, RN, MN, AOCN, CNS
Cedars-Sinai Medical Center
Mary Steinbach, DNP, APRN
Huntsman Cancer Institute University of Utah
Joseph D. Tariman,
PhD, RN, ANP-BC, FAAN
College of Science and Health De Paul University
Daniel Verina, DNP, RN, ACNP-BC
Mount Sinai Medical Center
International Affiliates
Tracy King, RN, MN
Institute of Hematology Royal Prince Alfred Hospital
The NLB Launches the Myeloma Treatment Discussion Tool and Prepares for the 2021 ONS Symposium
By Diane Moran IMF Senior Vice President, Strategic Planning
The IMF founded the Nurse Leadership Board® (NLB) in 2006 as a professional partnership to represent nurse experts caring for myeloma patients. The ongoing mission of the NLB is to improve the nursing care and self-care of patients with myeloma. In 2021, the NLB has been busily working on many projects, including an online video symposium for nurses and a new patient tool to enhance treatment decision-making. At the upcoming 2021 (virtual) Congress of the Oncology Nursing Society (ONS), NLB members Beth Faiman, Amy Pierre, Donna Catamero, and Charise Gleason will present a symposium, “Case Studies in Multiple Myeloma Care for Challenging Times.” Discussion will include real-life scenarios with rapidly evolving myeloma therapies that use newly approved agents and combinations, symptom management, and infection prevention (including vaccination). The symposium will also broach the topic of care disparities. “The COVID-19 pandemic has revealed healthcare disparities among patients with myeloma, but there are steps that nurses can take to ensure that all their patients receive optimal care,” says Amy Pierre. “As nurses, we know our patients. We can ensure they receive the education and encouragement they need to actively participate in their healthcare. Our patients must have equal opportunities to receive new therapies, stem cell transplantation, and access to clinical trials.” The virtual video symposium is broken into three parts, and nurse participants can claim continuing education credit (up to 1.5 CNE) upon successful completion of the post-test. This engaging NLB symposium will certainly be a highlight at this year’s ONS Congress. The NLB nurses have also been hard at work on a Myeloma Treatment Discussion Tool that can help align patients and caregivers with their healthcare providers during treatment decisions. This tool, which is now available through the IMF, was created by Beth Faiman, Tracy King, Kim Noonan, Cindy Manchulenko, Charise Gleason, Joseph Tariman, Ann McNeill, and Mary Steinbach. “Unfortunately, many patients, caregivers, and their healthcare providers find it difficult to have a discussion about treatment priorities,” says Beth Faiman. “Myeloma treatment is not one-size-fitsall. With so many excellent treatment options, the deciding factor is often the preferences of the myeloma patient and their caregiver(s). This Myeloma Treatment Discussion Tool is designed to support a meaningful conversation to find the right treatment for an individual situation.”
The tool begins with a series of statements to help patients and their caregivers to define their preferences, followed by a series of questions to further ensure that patients and their caregivers have the information needed to be active participants in treatment decisions. With the ONS symposium and the Myeloma Treatment Discussion Tool, 2021 is off to a busy start for the NLB! MT Please visit nlb.myeloma.org to learn more about the work of the IMF’s Nurse Leadership Board
IMF Advocacy Priorities for 2021
By Robin Levy IMF Senior Director, Public Policy & Advocacy
I’ve spent much of my career working in Washington, DC. These days, due to the pandemic, I spend most of my time on conference calls with lawmakers. Presidential inaugurations and the excitement that comes along with them, as well as the beginning of a new Congressional term, are some of my favorite times. They embody the rich history of our nation and provide a new opportunity to educate lawmakers about myeloma. I truly enjoy educating them about this disease, as well as the policy changes that would help the myeloma patients I am proud to serve. I am thrilled to share some of the International Myeloma Foundation’s advocacy priorities for 2021. Ensuring that myeloma patients are able to access optimal treatment and care is at the top of our priorities for the new Congress and Administration. First and foremost, the IMF is continuing our work as the leaders of the Coalition to Improve Access to Cancer Care (CIACC). This coalition allows us to advocate for our patients who are taking oral chemotherapy drugs. We are working with Congressional leaders to reintroduce the Cancer Drug Parity Act, a bill which will ensure that patients do not pay more for oral cancer therapies than they do for treatments administered by intravenous infusion. The Cancer Drug Parity Act only has an impact on people with private insurance, but we intend to advocate in other ways for Medicare patients as well. We have joined efforts in advocating for a Medicare out-of-pocket cap, which would place a limit on what patients pay for Medicare Part D drugs over the course of a year. This would give patients certainty and predictability. In the same vein, we have also let lawmakers know that it would be beneficial to spread these costs throughout the year so patients don’t face a large bill at the start of a year. This is known as a smoothing mechanism and would provide patients with additional support. We will also continue to work on anticipated access issues that could have an impact on myeloma patients as new treatments are approved by the U.S. Food and Drug Administration (FDA). The FDA recently approved Abecma® (idecabtagene vicleucel, a.k.a. ide-cel), a BCMA-directed CAR T-cell immunotherapy, for use in adult patients with relapsed and refractory myeloma who have had four or more prior lines of therapy and who have been “triple-class exposed.” (Read more about Abecma on page 5 of this Myeloma Today edition.) We have learned a lot from colleagues who work with other forms of cancer, for which CAR T-cell therapies have already been approved. In the past, we have advocated for this issue to the Centers for Medicare and Medicaid Services and have also educated Members of Congress. We will continue to work to ensure that all new therapies are accessible to patients when they are approved, and we look forward to educating new lawmakers about this important issue. Another crucial part of our work is to lobby for myeloma research. Each year, we lobby for increased cancer research funding through several avenues. In addition to the National Institutes of Health (NIH), there are other sources of cancer research funding. For example, the Department of Defense (DoD) conducts research on diseases that are service-connected through their Congressionally Directed Medical Research Program (CDMRP). Congress specifies which diseases are eligible for research funds and we work to ensure blood cancers are included. I am looking forward to talking to new Members of Congress about myeloma and why it is an important disease to research. While most of our agenda is proactive, there are many instances where we must react quickly to proposed changes. In 2020, much of our advocacy agenda pivoted to ensuring myeloma patients’ perspectives were heard during the discussions surrounding the COVID-19 pandemic. We talked to lawmakers and built coalitions of cancer advocates to educate Washington about access to vaccinations, the triaging of care, and other issues. We anticipate this to continue and we pledge to make sure that the voice of the myeloma community is heard. We will educate lawmakers about myeloma and provide them with real-world examples of how patients and caregivers could be impacted. These are just some of our plans for 2021. We will bring you new opportunities to engage your legislators and invite you to sign up for our newsletter at myeloma.org/myeloma-action-center. We are looking forward to working with you this year! MT
SUPPORT FOR VETERANS
Get Your VAM Guide to VA Benefits
YOU ARE NOT ALONE. THE IMF IS HERE TO HELP. VETERANS.MYELOMA.ORG
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 0900–1600 Pacific Standard Time.
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
PARTNERS IN PROGRESS
Supporting Myeloma Research Toward a Cure
The IMF is improving the outcomes of myeloma patients and moving towards a cure. With clinicians and researchers from top institutions around the world working together, the IMF is taking the first steps to identifying curative treatments in subsets of patients. With philanthropic support, you can help the IMF change the trajectory of myeloma. If you would like to learn how to partner with us, please contact: Lynn K. Green, Ed.D. Senior Vice President, Philanthropy 334.332.0888 – lgreen@myeloma.org
International Myeloma Foundation 12650 Riverside Drive, Suite 206 North Hollywood, CA 91607-3421 USA
myeloma.org 800.452.CURE
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Dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.
We’re Here for You!
Please visit myeloma.org for the latest information from the IMF. For news from our international partners, please visit these websites:
myeloma.org.au
(Australia)
myelomacanada.ca
(Canada)
amen.org.il
(Israel)
myeloma.gr.jp
(Japan)
mielomabrasil.org
(Latin America)
