Understanding the Diverse Face of Multiple Myeloma

African Americans need treatment options for multiple myeloma as disease incidence is projected to rise.

When Reverend Veronica Graves had pain in her leg four years ago, both she and her doctor thought it was an exercise injury that would improve with rest. But the pain persisted, and a second trip to the doctor months later revealed a broken right femur. More tests revealed the fracture was the result of a blood cancer called multiple myeloma.

As an African American, Graves was more likely to be diagnosed with multiple myeloma. Based on population growth projections from the U.S. Census Bureau, the rate of multiple myeloma among African Americans is expected to increase over the next two decades. In 2011, African Americans made up 19 percent of men and 23 percent of women who were diagnosed with multiple myeloma; by 2034, those numbers are expected to jump to 23 percent and 24 percent, respectively.

“I am saddened by the news that anyone—regardless of their race and ethnicity—is diagnosed with this disease,” Graves said. “But that statistic particularly troubles me because I don’t know if research alone will help us address the issue.”

Increased understanding of patient demographics further exposes the racial inequality that exists when it comes to access to care. African Americans are less likely to receive the latest treatments and more likely to face treatment delays than white Americans. If African Americans make up a larger proportion of multiple myeloma patients, then more patients could experience barriers to the most appropriate care.

The root causes of this disparity are not known, but some evidence points to differences in socioeconomic status as a contributor.

Elisa Weiss

ELISA WEISS, PH.D., SENIOR VICE PRESIDENT OF PATIENT ACCESS AND OUTCOMES AT THE LEUKEMIA & LYMPHOMA SOCIETY, BELIEVES THERE NEEDS TO BE A CONCERTED EFFORT TO PROVIDE AFRICAN AMERICANS WITH BETTER MULTIPLE MYELOMA CARE.

“What that would mean is that it’s the poorest African Americans who are experiencing the greatest disparity in care,” Elisa Weiss, Ph.D., senior vice president of Patient Access and Outcomes at The Leukemia & Lymphoma Society (LLS), said. “There needs to be a concerted effort to provide African Americans with better care where they live and access to the latest treatments at cancer centers.”

Earlier this year, the LLS kicked off an initiative to do just that. Working with the National Black Church Initiative (NBCI), the organization launched a pilot program this past March in Washington, D.C., and Atlanta. The Myeloma Link initiative is providing African American communities in these cities with tools and resources to help navigate the multiple myeloma treatment landscape and improve their quality of life.

One aspect of the program is Myeloma Sundays. In participating churches, churchgoers will hear a multiple myeloma expert give a “health sermon” about the African American community’s increased risk for multiple myeloma and what they should know about treatments. During the fellowship hour after the service, LLS staff and volunteers are available to answer any follow-up questions.

“Black churches have historically been a trusted source of information for African Americans,” said Graves, who is working with LLS on this program. “When the community needs to know about something that is happening, they can always trust that their pastor has the latest, most credible information. LLS’s Myeloma Link program is just a great partnership.”

Group at United Methodist Church in Atlanta

AT CASCADE UNITED METHODIST CHURCH IN ATLANTA, THE LEUKEMIA & LYMPHOMA SOCIETY HANDED OUT INFORMATION TO THE AFRICAN AMERICAN COMMUNITY ABOUT THE SYMPTOMS AND TREATMENTS OF MULTIPLE MYELOMA AS PART OF THE MYELOMA LINK: CONNECTING AFRICAN AMERICAN COMMUNITIES TO INFORMATION, EXPERT CARE, AND SUPPORT PROGRAM.

Beyond Myeloma Sundays, churchgoers will be encouraged to connect with LLS information specialists. These experts can provide multiple myeloma patients in the African American community with information about financial support, treatment options and clinical trials.

We want to ensure that African Americans feel empowered to ask their providers about participating in clinical trials.

This support may also help address a serious disparity that exists in participation in clinical trials that evaluate new treatment options. In 2016, African Americans represented just 7 percent of patients enrolled in clinical trials.

“When faced with discrimination in daily life, it’s understandable that you might think you would be treated differently in a clinical trial,” Weiss said. “We work to educate patients about clinical trials, address these kinds of concerns, and remove any stigma associated with participation in a trial. We want to ensure that African Americans feel empowered to ask their providers about participating in clinical trials.”

Churchgoers in Atlanta

CHURCHGOERS IN ATLANTA LISTENED TO A “HEALTH SERMON” ON MULTIPLE MYELOMA GIVEN BY A LOCAL EXPERT

So far, the program has been well received, according to Weiss. LLS is now developing local resource books, support groups and peer-to-peer connections between ambassadors and patients within African American communities.

Reverend Graves believes that providing support for the African American community is only the starting point. “The onus can’t rest only on African Americans to be more proactive. The doctors who serve the African American communities must help everyone get the most appropriate treatments across the board. That’s essential to eliminating these disparities in multiple myeloma.”

To learn more about the increased risk for multiple myeloma that African Americans face, read “Myeloma Is Twice As Likely To Strike African Americans.”