Multiple myeloma (MM), the second most common blood cancer, is at least twice as common and twice as deadly in African Americans compared with Caucasian Americans, according to the Multiple Myeloma Research Foundation. Yet, even as treatments have advanced considerably in recent years, MM survival rates for African Americans have not kept pace with other patient populations.

So why do more African Americans die from myeloma?

Most importantly, myeloma specialists in the U.S. report that when the same treatment is received, the response rate, survival, and total health care costs are similar among Black and white Americans. African Americans may even have a slightly better survival rate.

“What that means is that if we could get equitable and equal and fair treatment, our outcomes could be better,” according to Marsha Calloway-Campbell, JD, Black myeloma health director at HealthTree Foundation. “But ‘if’ is the operative word, because that's what's not happening.”

Disparities

Disparities in Access, Treatment, and Care

“We all know that there are longstanding, high-level disparities where (in many cases) we just don't get the care that Caucasians get,” said Calloway-Campbell, who became a patient advocate when her husband was misdiagnosed, then ultimately diagnosed with MM. She offers these examples from myeloma patient experiences. Through awareness, outreach, advocacy, and support, she works to help educate patients, families, hospital staff, and general practitioners.

Dismissal of Symptoms

Bone pain is one of the symptoms of myeloma. A person of color in a hospital emergency department for severe back pain is anecdotally more likely to be dismissed with directions to take Ibuprofen and call their doctor, rather than receiving a prescription for needed pain killers and diagnostic tests.

Assumptions About Education Level

Racial biases work at both extremes. A Black attorney in the Cincinnati, Ohio area, Calloway-Campbell is confident that if she shows up in an urgent care or hospital emergency setting wearing a hoody, her education level is more likely to be questioned, compared to a similarly dressed, similarly educated white woman. The result could be that less time is spent explaining her condition because of an assumption of a lower level of understanding. Likewise, a healthcare professional might speak quickly and well over the head of a lower educated individual, who then walks away confused and frustrated.

Misdiagnosis and Delayed Diagnosis

There can be a simple reason for anemia, or a major problem, such as myeloma.

Some healthcare providers inaccurately believe that African Americans are normally anemic. This can lead to a failing to investigate the cause for anemia, which then contributes to misdiagnosis and delays accurate diagnosis.

The acronym for diagnosing myeloma is CRAB – for elevated Calcium, Renal failure (or kidneys not fully functioning), Anemia, and Bone lesions that may or may not be associated with pain. Proactive laboratory bloodwork and a 24-hour urine test can easily start the process. High calcium in the blood can be an early indicator of myeloma. As bones start breaking down because of the cancer, calcium is leaked into the bloodstream.

Best practice next steps in the diagnosis process are imaging studies (ie., x-rays, CT scan, PET/CT or MRI). These are best read by a radiologist familiar with myeloma, as the “holes” in bones affected by myeloma have been known to be misread as arthritis or other conditions. A bone marrow biopsy is a final tool used to confirm myeloma.

Social Determinants of Health

Additional racial disparities and barriers to equitable healthcare are well-documented. Black patients are not as likely to live close to an academic center, with increased awareness about MM and available specialists. They may live in a rural area and not have transportation. They may have limited or no paid time off from work, or childcare to get to a practitioner who recognizes potential myeloma.

Clinical Trials

Clinical Trials and Cultural Competency

The question of how to enroll more Black participants in clinical trials is being asked across big pharma and medical and research communities. The biggest challenge appears to be mistrust of what is perceived as “experimental” medicine, particularly among older patients. In addition, there are studies that report African Americans are not as likely to be asked about clinical trial participation.

Language matters for accuracy and perceptions. Medical doctors can help by involving their entire care team when discussing clinical trial opportunities. Nurses, social workers, patient navigators and others may be able to explain clinical trials in more clear terms, while addressing a patient’s family, community and culturally relevant concerns.

Takeaway

Takeaways

Certain genetic mutations are believed to occur more frequently in African American patients with myeloma patients than their white counterparts, including three forms of a specific type of mutation called a translocation. As determined in several studies, clinical aspects of myeloma also may differ by race, for example an earlier age at diagnosis, increased anemia, or other symptoms.

Addressing inequities in access to early, accurate diagnosis and the best appropriate treatment, can help level the survival field between African Americans and white Americans diagnosed with myeloma.

Appropriate representation is needed of African Americans in myeloma clinical trials, according to Craig Cole, MD, a multiple myeloma specialist at Michigan State University Breslin Cancer Center. Because survival of minorities is like that of white Americans when enrolled in clinical trials, this offers African Americans equal access to potentially better treatment options.

“Every year, clinical trials are getting more effective and safer. The results replace the previous standard of care for a better working treatment,” Dr. Cole said.

This article was originally published February 17, 2023 and most recently updated March 14, 2023.
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Ruth Fein, Host, MPN Patient and Advocate:  
David Dingli, MD, PhD, FRCP, FRCPEd, CBiol, FRSB, FRSM, Professor of Medicine, Division of Hematology: