The International Myeloma Foundation held a Patient and Family Seminar at the Hilton Los Angeles/Universal City from August 16-17, 2024.
The International Myeloma Foundation (IMF) once again, gathered doctors, patients, and families in Los Angeles to share stories and connect with those who are going through similar experiences, living with the second most common blood cancer in the world.
This year’s IMF Los Angeles Patient and Family Seminar (PFS) tackled a variety of topics that are highly relevant to the myeloma community:
- Welcome and Agenda Review; and Patient, President & CEO Address—IMF President & CEO and 28-year myeloma patient Yelak Biru
- Hot Topics in Myeloma — IMF Chief Medical Officer Dr. Joseph Mikhael (TGen, City of Hope—Phoenix, AZ)
- Shared Decision Making —IMF InfoLine Advisor and NLB Member Teresa Miceli, RN, BSN, OCN (Mayo Clinic—Rochester, MN)
- Advanced Care Planning —Clinical Nurse Coordinator Wendy Thomas, RN, MSN, CHPN (KU Medical Center, University of Kansas—Kansas City, KS)
- Myeloma 101 and Understanding Your Labs — IMF Chief Medical Officer Dr. Joseph Mikhael (TGen, City of Hope—Phoenix, AZ); and InfoLine Advisor and NLB Member Teresa Miceli, RN, BSN, OCN (Mayo Clinic—Rochester, MN)
- Advocacy—IMF Director of Public Policy and Advocacy Danielle Doheny
- Clinical Trials—IMF President & CEO and 28-year myeloma patient Yelak Biru; and IMF Chief Medical Officer Dr. Joseph Mikhael (TGen, City of Hope—Phoenix, AZ)
- Keynote: What is the Future of Myeloma? (w/ Q&A)— Perspectives from IMF Chief Medical Officer Dr. Joseph Mikhael (TGen, City of Hope—Phoenix, AZ) and Sagar Lonial, MD, FACP, Hematologist and Chief Medical Officer; Professor and Chair, Dept. of Hematology and Medical Oncology, Emory University School of Medicine; Anne and Bernard Gray Family Chair in Cancer, Emory University School of Medicine (Winship Cancer Institute of Emory University— Atlanta, GA)
- Morning Breakout Sessions —Treatment Approaches in Myeloma
- Newly Diagnosed: An Approach to Frontline Therapy—Sagar Lonial, MD, FACP, Hematologist and Chief Medical Officer; Professor and Chair, Dept. of Hematology and Medical Oncology, Emory University School of Medicine; Anne and Bernard Gray Family Chair in Cancer, Emory University School of Medicine (Winship Cancer Institute of Emory University— Atlanta, GA)
- An Approach to Relapsed Myeloma—Angela Dispenzieri, MD; Hematologist (Mayo Clinic — Rochester, MN)
- Partnering with the IMF—IMF Vice President of Development Sylvia Dsouza
- Seasons of Multiple Myeloma—IMF NLB Member Tiffany Richards, PhD, ANP-BC, AONCP® (MD Anderson Cancer Center, Texas Medical Center—Houston, TX)
- Health Disparities in Myeloma — IMF Chief Medical Officer Dr. Joseph Mikhael (TGen, City of Hope—Phoenix, AZ)
- Afternoon Breakout Sessions—Patient and Care Partners
- Patients Only – Lessons Learned: IMF Support Group Leader and 24-year Myeloma Patient Michael Tuohy; IMF President and CEO and 28-Year Myeloma Patient Yelak Biru; and 7-year Myeloma Patient in Los Angeles, Todd Kennedy
- Care Partners Only: IMF Vice President, Patient Support and 24-year Myeloma Care Partner Robin Tuohy; IMF InfoLine Advisor and NLB Member Teresa Miceli, RN, BSN, OCN (Mayo Clinic—Rochester, NY); and 7-year Myeloma Care Partner in Los Angeles, Diane Kennedy
- Wild Card Topic: Diet and Myeloma— Urvi A. Shah, MD, Myeloma Specialist, Oncologist, and Researcher (Memorial Sloan Kettering Cancer Center—New York, NY)
- Ask-the-Experts - Open Forum Discussion with Guest Faculty
Some of the key takeaways of PFS-LA include:
The IMF’s Transformation
IMF President & CEO and 28-year myeloma patient Yelak Biru spoke about his myeloma journey and how the IMF has made such a significant impact (and continues to make an impact) on the lives of myeloma patients, including himself.
Vision and guiding principles
He emphasized the IMF’s new vision— “a world where every myeloma patient can live life to the fullest, unburdened by the disease”—and how the IMF is working hard to achieve this vision by enacting guiding principles in Research, Education, Support, and Advocacy:
- raising the bar in examining the why of the IMF’s actions to ensure that they are purpose-driven, meaningful, and effective
- broadening the IMF’s reach to address unmet patient needs by expanding reach to diverse and underserved populations in everything the IMF does
- innovating every step of the way by providing those who need it most with what they need the most, throughout their myeloma journeys.
Superpowers and strategic priorities
Yelak also highlighted the IMF’s “superpowers”—being collaborative, creative, and comprehensive, and practicing an “agile and integrated full patient-centered program approach” in its catalogue of services.
He elaborated on the IMF’s strategic priorities:
- Initiating and running a concierge service for myeloma patients and community oncologists
- Meaningfully collecting the patient’s voice to generate real-world evidence and to inform research, policy, and care
- Having the question as the answer—unmet research needs that we can ask and accelerate through
- Acquiring large-scale funding for the top three research questions
- Forming a U.S. Myeloma Clinical Trial Network
New leadership, promising future for myeloma patients
With a new leadership and set of Board of Directors, as well as the creation of a Dream Team Scientific Advisory Board, Yelak is optimistic about the IMF’s transformation and a brighter future for patients living with the disease.
To conclude his presentation, Yelak delivered a powerful message: “Live with, and not for myeloma.”
Hot Topics in Myeloma
In this part of the PFS, IMF Chief Medical Officer Dr. Joseph Mikhael discussed recent advancements and changes in myeloma treatment strategies — emphasizing the importance of education, connection, and inspiration for patients. He highlighted three key developments: the trend towards using multiple drugs upfront in treatment, the potential resurgence of belantamab mafodotin (Blenrep), and the concept of "less is more" in drug dosing.
Key points include:
- More drugs upfront: Recent clinical trials have shown that combining multiple drugs upfront in myeloma treatment can significantly improve outcomes compared to traditional approaches. This approach aims to manage the complexity and diversity of myeloma as a disease with multiple facets.
- Resurgence of belantamab mafodotin: Despite initial setbacks, belantamab mafodotin has shown promise in recent phase three trials, demonstrating effectiveness in Myeloma treatment without the need for T-cell collection, albeit with manageable side effects like ocular complications.
- Less is more: Over time, myeloma treatment strategies have evolved to emphasize minimal effective dosing, moving away from maximum tolerated doses. This approach aims to optimize treatment efficacy while minimizing side effects, enhancing patient quality of life.
These developments reflect ongoing efforts to advance myeloma care through innovative therapies and patient-centric approaches, fostering hope and improved outcomes for those affected by the disease.
A Closer Look at Clinical Trials
IMF Chief Medical Officer Dr. Joseph Mikhael, along with IMF President & CEO and 28-year myeloma patient Yelak Biru, did a thorough presentation on the rationale, phases, risks, and benefits of clinical trials, as well as feedback from myeloma patients who have taken part in clinical trials.
Clinical myths vs Benefits vs Potential risks
Among the topics covered were clinical trial myths and why they should be debunked, as well as the numerous benefits of participating in a clinical trial, which include:
- having early access to new therapy
- delaying the use of standard therapy
- being able to contribute to the field of myeloma, both now and in the future
- having financial access to certain agents
However, there are also potential risks involved, such as toxicity of side effects and the possibility that there would be a lack of efficacy.
Why few cancer patients participate in clinical trials
The discussion centered on the reasons why few cancer patients participate in clinical trials:
- lack of awareness and access to clinical trials
- fear and distrust of research
- practical or personal obstacles
- cost and health insurance issues
- unwillingness to go against physician’s wishes
- physicians who do not offer or encourage participation in clinical trials
- being disconnected from their healthcare team
Diversity in clinical trials
Additionally, the presentation tackled the issue of lack of diverse representation in myeloma clinical trials, with 20 percent of myeloma patients in the U.S. being of African descent but only 5-8 percent having participated in clinical trials.
Reasons for this underrepresentation were brought to light: systemic racism, accessibility of clinical trials, and sensitivity to diversity by medical professionals to name a few.
Diversity patient representation in clinical trials has a crucial role—it ensures that the outcomes will be applicable to all patients. Regardless of race or ethnicity, all patients should be able to benefit from clinical trials.
Health Disparities in Myeloma
On Day 2, Dr. Mikhael enlightened PFS participants on what health disparities are, why they exist, and why health equity should be top priority, as it ensures that individuals “achieve the highest level of health through the elimination of disparities in health and healthcare.
He relayed several facts about African Americans, Hispanic Americans, and myeloma:
- There is a longer time from symptoms to diagnosis among African Americans.
- African Americans and Hispanic Americans are about 5-6 younger at diagnosis.
- Multiple myeloma and monoclonal gammopathy of undetermined significance (MGUS) are more than twice as common among African Americans.
- Both groups are less likely to receive the FOUR T’s: Transplant, Triplets, Trials, and CAR Ts.
- African Americans have biologic differences with more t(11;14) and less high-risk cytogenetics with deletion 17p.
- Survival outcomes in African Americans are half of what is seen among White Americans.
- African Americans can achieve equal or better outcomes when they receive therapy.
The IMF continues to actively address these health disparities through the M-Power Initiative.
The Brian D. Novis Grants Reception
As a fitting conclusion to PFS-LA, the Brian D. Novis (BDN) Grants Reception and Dinner was held on Saturday, August 17, with IMF Vice President of Development Sylvia Dsouza acting as the evening’s host and emcee.
IMF President & CEO Yelak Biru kicked off the evening with his opening remarks, where he presented a video on Impact and Innovation and spoke about his personal and professional journey at the IMF.
This was followed by a few words on the impact of research and mentorship from Dr. Angela Dispenzieri of Mayo Clinic in Rochester, MN.
IMF Vice President of Patient Support Robin Tuohy facilitated the awards segment and introduced the grant recipients and donors.
This year’s BDN junior grant recipients are Martin Gazvoda, Ph.D., of the University of Ljubljana in Slovenia (organized by Kent Oliver and funded by Laughs for Life); and Alireza Gholipour, Ph.D of Massachusetts General Hospital in Boston (organized by Ron and Sheree Pask, and funded by Miracles for Myeloma 5K Run/Walk).
The BDN senior grant was awarded to Mark Bustoros, MD, of Weill Cornell Medical College in New York (organized by Pam Poliakoff and the IMF and funded by Miles for Myeloma 5K Run/Walk and Inland Empire 5K Run/Walk for Myeloma Miracles).
In his closing remarks, IMF Chief Medical Officer Dr. Joseph Mikhael spoke about the future of myeloma research and related initiatives at the IMF and beyond.
Overall, the Patient and Family Seminar in Los Angeles was well-attended and highly successful—with 158 in-person participants in attendance.
In case you missed it, you can still watch the video replays of PFS-LA on the IMF website. You may also download the presentation slides.
