Why Multiple Myeloma Awareness Matters
Imagine feeling exhausted for months, your bones aching, infections coming one after another—only to be told you have an incurable blood cancer. That’s the reality for thousands diagnosed each year with multiple myeloma, a complex and often relentless disease affecting plasma cells, a type of white blood cell found in the bone marrow. Despite advancements in treatment, multiple myeloma remains challenging to manage, as many patients experience disease relapse or develop resistance to therapy.1,2 Even more troubling, racial and socioeconomic disparities mean that some communities face additional barriers to diagnosis and treatment.
This Myeloma Action Month, we’re spotlighting the progress made—and the work still to be done. We spoke with Joseph Mikhael, MD, MEd, FRCPC, FACP, FASCO, Chief Medical Officer of the International Myeloma Foundation (IMF) to gather his insights on treatment advances, access to equitable care and how individuals can make a difference in the myeloma community. Let’s see what he had to say:
Understanding Multiple Myeloma
Can you explain what multiple myeloma is?
In simplest terms, multiple myeloma is a blood cancer that affects a person’s plasma cells, a type of white blood cell. Plasma cells produce antibodies (immunoglobulins) to fight off infections. When plasma cells become malignant—meaning they become cancerous and start growing uncontrollably, they can become myeloma cells.
Multiple myeloma can affect so many parts of a person’s body, and patients with myeloma are at higher risk of infections—partly because they have a reduced number of normal plasma cells to make good antibodies, but also because the other immune cells produced in the marrow, like white blood cells, may be crowded out by the myeloma cells.
So, for a multiple myeloma patient, we are concerned with how the disease affects their bones, their kidneys, their blood and their immune system.
Addressing Disparities in Myeloma Care
What are some of the most significant disparities in accessing equitable care?
In the U.S., African Americans are about 14% of the country's population, but they constitute about 20% of all myeloma patients. This is because individuals of African descent have twice the risk of developing myeloma. Furthermore, real-world survival in Black African American and Latino American patients is significantly shorter than in White patients. There are many drivers of that disparity, including the social determinants of health, the healthcare system, delayed diagnosis and reduced access to therapies.
The diagnosis of myeloma in most patients is delayed due to its vague symptom onset, but it is even longer in African American and Latino American patients. Some of this may be due to access to primary care and confounding conditions like diabetes. Advancements in myeloma therapies over the last several years have expanded treatment options, yet access to these key treatments remains disparate.
How is the IMF’s M-Power program tackling these challenges?
The IMF’s M-Power® Initiative brings education and advocacy directly to underserved communities.
M-Power hosts in-person workshops that educate participants about myeloma and empower them with knowledge. The workshops are conducted in optimal locations to reach the Black and African American community, including at churches and community centers.
The M-Power Initiative also continues to partner with W. Montague Cobb/NMA Health Institute’s Cobb Scholar Program. Together, we have developed a mentoring program for underrepresented medical school students. Selected students, many from Historically Black Colleges or Universities (HBCUs), are paired with myeloma experts dedicated to health equity and they collaborate on projects related to health disparities in myeloma.
As we look forward, M-Power will widen its scope to Hispanic/Latin Americans in the U.S. and focus on the three facets - community engagement, primary care education and myeloma care enhancement.
A Rapidly Evolving Treatment Landscape
How has the multiple myeloma treatment landscape evolved over the years?
Multiple myeloma treatment has evolved rapidly in recent years, bringing new hope to patients and their families. From more powerful frontline therapies to cutting-edge relapse treatments and innovative disease monitoring, these breakthroughs are reshaping the treatment landscape.
Newly diagnosed multiple myeloma patients now have access to advanced combinations that achieve high response rates, leading to deeper and more sustained remissions. Patients experiencing relapse currently have access to standard of care triplet therapies that are widely available. Additionally, cutting-edge immune-based therapies, including cell therapies and bispecific antibodies, are being introduced earlier in treatment, potentially transforming disease management.
With more effective frontline treatments, earlier use of advanced relapse therapies, and smarter disease monitoring, myeloma care is improving at an unprecedented pace. These innovations not only provide the potential to extend survival but also the potential to enhance quality of life—offering patients more time and hope than ever before.
Powering Research & Innovation
How does the IMF contribute to advancing research and new treatment options?
The IMF is home to the International Myeloma Working group (IMWG)—a network of over 350 experts who convene and facilitate collaboration and research across the globe.
In addition, the IMF drives progress in multiple myeloma research (found on myeloma.org) and treatment by funding groundbreaking studies through our Black Swan Research Initiative® (BSRI), leveraging advanced data analytics and developing innovative patient support tools. Through BSRI projects, the IMF advances research that leads to more personalized and effective treatment options.
By prioritizing real-world evidence and collaborating with organizations such as ZS Associates, LatentView Analytics and Amazon Web Services, the IMF helps accelerate clinical breakthroughs that directly benefit patients.
Through commitment to research, technology and patient advocacy, the IMF continues to drive transformative change in multiple myeloma care.
What role do partnerships play in advancing myeloma care?
Partnerships with the scientific and biopharma communities allow the IMF to continue its vital research initiatives, educational resources, support services and advocacy efforts for the myeloma community worldwide. Their partnerships provide critical seed funding to accelerate the path to potentially finding a cure. This funding can expedite the discovery of innovative treatments and expand IMF programming to support those affected by this incurable disease.
Supporting Patients & Caregivers
How does the IMF support patients, caregivers and HCPs throughout the myeloma journey?
The IMF’s robust website (myeloma.org) is the resource that aggregates the organization’s many services in the areas of research, education, support and advocacy.
Beyond digital tools, the IMF brings people together through in-person and virtual events. From one-hour webinars to our Patient & Family Seminar program, we connect patients and caregivers with the multiple myeloma community. We also offer local and virtual support groups, ensuring no one has to face myeloma alone.
For those who prefer printed materials, the IMF provides hundreds of free publications, available globally in 21 languages and can be easily accessed as downloadable PDFs or order by mail.
What advice do you have for patients with a new diagnosis or relapse of MM?
For patients who may feel overwhelmed, we want to remind them that they are not alone - we are here to help support them every step of the way.
We encourage patients to explore the IMF website (myeloma.org) and find resources tailored to their needs. They may prefer:
- Educational materials to read that their own pace.
- Speaking to an IMF coordinator through IMF InfoLine at:
- 800-452-2873 (U.S./Canada)
- 1-818-487-7455 (Worldwide)
- Email: infoline@myeloma.org
- Joining a local or virtual support group to connect with others, when ready.
No matter what the patient’s decisions are, the greatest reminder here is that living with a disease is a marathon, not a sprint. Don’t isolate and try to take things one step at a time. Avoid overloading yourself with information - every patient’s experience of the disease will be different along their treatment journey. The IMF is here to help guide you with trusted resources and supportive community.
What are some key resources the IMF provides for education, treatment, navigation and emotional support?
The IMF offers a variety of resources to support patients, caregivers and healthcare professionals, including:
- A comprehensive website with educational materials and tools.
- Over 100 free publications covering multiple myeloma topics.
- Virtual and in-person events to connect patients with the community.
- Support groups for patients and caregivers.
For a full list of available resources, visit myeloma.org.
Taking Actions: How You Can Help This Myeloma Action Month
How can individuals and organizations support the IMF and help amplify awareness?
This year we’re celebrating progress, resilience and hope through the #MyelomaMilestone campaign, which focuses on empowering individuals to share their personal milestones in the fight against multiple myeloma. Whether it’s a significant treatment breakthrough, overcoming a tough challenge, seeing your grandchildren graduate, traveling to a long-awaited destination, learning a new skill, or simply enjoying a precious moment with loved ones—every milestone, big or small, is worth celebrating.
Here are a few ways to get involved:
- Visit myelomaactionmonth.org to learn more
- Share social graphics from our social media toolkit (located under “take action” drop down menu)
- Download the Patient Action Letter and mail it to a health care professional who may not know about MM symptoms (located under “take action” drop down menu)
- Share personal myeloma milestones
- Continue advocating for the MM community year-round by signing up for communications by visiting myeloma.org
- Start a peer-to-peer fundraiser to raise funds for a specific IMF program—it can be as easy as hosting a bake sale or luncheon, or as elaborate as a golf tournament or a run/walk
For fundraising details, contact Kimberly Francis at kfrancis@myeloma.org.
Every action, big or small, raises awareness and advances myeloma care.
References
- American Cancer Society. What Is Multiple Myeloma? Available at: https://www.cancer.org/cancer/types/multiple-myeloma/about/what-is-multiple-myeloma.html. Accessed May 3, 2024.
- Bhatt P, et al. Curr Oncol. 2023;30:2322–2347.
