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Myeloma incidence

Myeloma is considered to be a rare disease, but the precursor states of myeloma can be very common. Myeloma accounts for about 2% of all cancers, but it’s twice as common in the African American community. Indeed, 20% of all myeloma patients in the United States are of African descent. Being of African descent myself, this is both personally and professionally important to me.

Health disparities include the differences in the incidence of a disease but, ultimately, it is about how people survive and live with the disease. Although African Americans are twice as likely to have myeloma, their survival is roughly only half that of white Americans. The mortality of African American myeloma patients is nearly twice that of white Americans. It’s not acceptable that there’s such a difference in survival.

Similarly, within the Hispanic community, myeloma patients also have a reduced survival. In addition, Hispanics are on average the youngest patients diagnosed with myeloma. The average age of myeloma diagnosis is around 69–70 overall, 65–66 in African Americans, and 64–65 in Hispanic Americans.

Discrepancy in survival

African Americans and Hispanic Americans are less likely to obtain an early and accurate diagnosis of myeloma. There is also a disparity in access to the treatments that I call the Big Four Ts: triplet (3-drug) combination therapy, autologous stem cell transplant (ASCT), clinical trials, and CAR T-cell therapy (one of the newest available treatments). It’s not acceptable that many in our community don’t have access to the best of available therapies.

Research presented at ASH 2022

More than 1,000 abstracts relevant to myeloma were presented at ASH 2022. ASH meetings cover all blood diseases, and for myeloma to have such a large footprint this year is truly exciting. Approximately 25 abstracts focused on health disparities in the seven categories outlined below, and three abstracts were selected for the high distinction of oral presentations.

1. Social determinants of health

Health is not just a function of interacting with a healthcare professional. It also includes housing, education, nutrition, and the influence that these systems have on our lives overall. Several

ASH abstracts looked at how outcomes are influenced by racism and by issues of trust within the healthcare system. For social determinants of health, we see a significant impact not just in general health, but specifically in myeloma.

Abstract 4907 looked at the impact of social vulnerability index (SVI) on survival following ASCT for myeloma. Areas where there is a significant SVI should be guiding part of the work that we’re doing in myeloma. Abstract 2266 looked at how patients of lower socioeconomic status were less likely to obtain an ASCT. Abstract 4522 demonstrated that socioeconomic status was not associated with adherence to treatment, nor with progression-free survival (PFS) or overall survival (OS). We know that adherence leads to better outcomes.

2. Insurance coverage

Abstract 2309 looked at racial differences in Medicare Part D enrollment and survival among older patients with myeloma. While patients who are enrolled in Part D may have better access to certain myeloma therapies, race and ethnicity create an issue with access. A study of over 56,000 people in the National Cancer Database showed that African American patients were less likely to have private insurance and more likely to have Medicaid or to be uninsured, which led to inferior outcomes in survival. A suggestion made in several abstracts was for clinics to have trained “navigators” to assist patients with enrolling into insurance and other helpful programs.

3. Access to treatment

What is the biggest health disparity in myeloma? Access to treatment. Abstract 172 offered perspectives on myeloma-related healthcare access barriers. To address all the pragmatic challenges of getting a patient to the clinic, multi-level intervention necessitates the engagement of the community, including help with transportation, financial navigation, and appointment scheduling. The study concluded that community outreach was most important to educating both patients and non-specialists in the healthcare community. It’s gratifying to see a prominent ASH abstract focusing on the importance of community engagement and education of the primary care world for reducing health disparities.

4. Difference in biology

Prior studies have demonstrated that African Americans have differences in the biology of myeloma, with higher incidence of standard-risk cytogenetic abnormality “t(11;14)” and lower incidence of high-risk cytogenetic abnormality “deletion 17p.” African Americans are more likely to respond well to myeloma therapies because they have less high-risk disease biologically. Given equal access to treatment, the disparity in mortality between white and African American patients disappears.

Abstract 3582 noted the impact of Hispanic ethnicity on myeloma characteristics. Hispanics have a greater likelihood of extramedullary myeloma and of chromosomal abnormality “del 1p” when compared to white Americans. Abstract 4495 looked at renal function and race in individuals who were screened for MGUS. Abstract 252 (also mentioned in the two categories below) presented racial and ethnic differences in clinical outcomes among myeloma patients treated with CAR T-cell therapy.

5. Side effects

Abstract 252 demonstrated that African American and Hispanic American patients were more likely to experience cytokine release syndrome (CRS) after CAR T-cell therapy, and were more likely to stay in the hospital longer. Abstract 3173 noted that newly diagnosed African Americans were more likely to develop peripheral neuropathy from Velcade® (bortezomib). Abstract 4560, a subgroup analysis of newly diagnosed transplant-eligible Black patients receiving 4-drug combination therapy found that more African Americans were more likely to need a dose reduction due to side effects, and more likely to discontinue therapy, but had fewer deaths.

6. Outcomes

Several studies looked at the differences between what clinical trials show and what we see in the real world. These studies often draw from large databases like the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI). Abstract 4904 looked at key trends over time in OS of myeloma patients by race and ethnicity, and by comorbidity status. OS in myeloma continues to improve. Unfortunately, improvement has not been seen to the same degree in both African American and Hispanic patients. However, there is hope as the gap is starting to be bridged. We also saw that there was reduced survival independent of race and ethnicity in patients that have diabetes and hypertension. As a myeloma doctor, I treat the individual patient, not just their plasma cells. I look at their whole social context and their whole medical care.

Abstract 252 noted that Hispanic patients seemed to have a reduced response rate and PFS after CAR T-cell therapy when compared to white patients. This needs to be understood further, but helps us appreciate the impact of race and ethnicity even with these newer and highly effective therapies. Abstract 4948 looked at factors associated with early mortality of myeloma patients who die within two years of diagnosis. Early death in myeloma is more common in African Americans and Hispanics. There is clearly much more work to do to reduce these disparities.

7. Communication

Abstract 2235, which I presented, reported on the experiences and expectations of doctors and patients and how they thought they were doing in their treatment, to see if there was a difference in perspective. What we learned is that often there is a difference between white patients and African American patients in how comfortable they were with their treatment plan, how confident they were in their treatment team, and how they feel that issues were communicated to them. One of the most important points I can share is that the relationship and the communication between patients and their healthcare providers is of critical importance. Do not prejudge your patient before you walk into that room. Listen to them. What are their desires and expectations? Why might there be hesitancy? Do they need support with decision-making? It is a very positive sign that many doctors who participated in this study were keen to implement strategies to improve communication with their patients, including taking courses on unconscious bias and shared decision-making.

In closing

It’s a privilege to share with you some of the latest research in health disparities in myeloma. Disparities extend beyond delayed diagnosis and access to treatment. They include the systemic racism in our healthcare system and the way providers communicate with patients and care partners.

The IMF is deeply committed not only to better understand the disparities but also to drive solutions. The IMF’s M-Power initiative was launched to empower patients and communities to change the course of myeloma. We’re partnering with local medical and non-medical groups to raise awareness of myeloma, enhance early and accurate diagnosis, and improve access to treatment. Visit mpower.myeloma.org to learn about our program and to access the resources that the IMF makes accessible to all. If we work together, we can make a difference in the lives of patients with myeloma. MT

Stay tuned for Dr. Mikhael’s next #WHEREISDRJOE column and contact the IMF InfoLine with your myeloma-related questions and concerns. Phone lines are open 9 a.m. to 4 p.m. (Pacific) Monday through Friday at 1.800.452.CURE in the US and Canada and 1.818.487.7455 worldwide. To submit your query electronically, email InfoLine@myeloma.org .