Black Americans are not only at double the risk of white Americans for multiple myeloma but also develop it about five to 10 years earlier, according to the National Cancer Institute. Research published in February 2020 suggests that Black people may respond better to newer treatments than white people but are still twice as likely to die from it.
Why Does Myeloma Affect Black People More Than Other Ethnicities?
Researchers are still studying why Black Americans are more likely to develop multiple myeloma than other ethnicities are. One possibility: Black people are two to three times more likely than white people to have certain conditions that may progress to multiple myeloma, says Irene Ghobrial, MD, a professor of medicine at Harvard Medical School and oncology physician with the Dana-Farber Cancer Institute in Boston, as well as leader of the Stand Up to Cancer Multiple Myeloma Dream Team. These include monoclonal gammopathy of undetermined significance (MGUS), a condition in which an abnormal protein (monoclonal or M protein) forms in the bone marrow, and smoldering multiple myeloma (SMM) — essentially, multiple myeloma without any symptoms. It’s possible that a genetic predisposition to multiple myeloma or environmental factors or living conditions (or both) may play a role in why Black people are more likely to develop multiple myeloma, says Dr. Ghobrial. There are other disparities: Black people are more likely to not only develop myeloma but also have a poor chance of survival, despite advances in treatment options. According to the 2020 review, Black Americans are less likely to have access to myeloma treatments such as stem cell transplants and other new therapies.
How Does Myeloma Manifest Differently for Black People?
The symptoms of myeloma can be different for everyone, but the most common are anemia (low levels of healthy red blood cells), bone fractures, and renal dysfunction, says George Nahas, DO, a medical oncologist with Miami Cancer Institute, part of Baptist Health South Florida. Black populations with myeloma do experience these symptoms, but other signs, including hypercalcemia (higher-than-normal calcium levels), are also more common in Black people, according to the Multiple Myeloma Research Foundation. Myeloma also shows up earlier in Black Americans than white — at age 66, compared with age 70, respectively. The reason is unclear, says Shakira Grant, MBBS, a board-certified doctor of geriatric hematology and oncology and assistant professor at the University of North Carolina School of Medicine in Chapel Hill. Despite being more likely to develop the disease younger, Black people still present with more advanced or late-stage multiple myeloma at diagnosis, she says. According to Dr. Grant, systemic barriers to healthcare access and delays in diagnosis influence the likelihood that Black people with myeloma will show up with more symptomatic or burdensome disease at the time of diagnosis.
Delayed Diagnosis: Why It Happens and How It Affects Disease Progression and Outcomes
“Patients diagnosed at an earlier stage of the disease, without obvious clinical manifestations, likely have better outcomes,” according to Dr. Nahas. On the flip side, late diagnosis may contribute to multiple myeloma–related complications such as kidney failure and affect a patient’s satisfaction with their care experience. Being diagnosed at a later stage may also hinder the ability to participate in research studies, according to Ghobrial. Having complications such as kidney failure or low white blood cell count (leukopenia) can render people with multiple myeloma ineligible for clinical trials, she explains, preventing them from participating. Unfortunately, according to a review in The American Journal of Medicine, it takes around 100 days from the first multiple myeloma symptom to diagnosis. And for Black people, the likelihood of a timely diagnosis is much lower. The review highlighted a real-world analysis of 104 people diagnosed with multiple myeloma, which showed that 62 percent of those who had experienced a delay in diagnosis were Black. Delays in diagnosis are generally due to access to healthcare, according to Grant. Black people are more likely to face barriers such as lack of socioeconomic resources. They are also more likely to mistrust the healthcare system. Together, that may limit how often Black Americans obtain medical care, Ghobrial explains. Symptom dismissal or misdiagnosis may also hinder a timely myeloma diagnosis. Grant explains that, in a primary care setting, when people with myeloma show up with back pain, bone pain, and fatigue, a doctor may attribute it to aging or misdiagnose it as a noncancerous condition. The review suggests that Black people are also less likely to receive a complete diagnostic test for multiple myeloma than white people. Multiple myeloma is a rare disease, with only 34,470 new cases diagnosed in 2022 in the United States. As such, doctors tend to test and treat people with myeloma symptoms for other conditions before considering multiple myeloma — if they do at all, according to Grant.
Racial Disparities in Multiple Myeloma Treatment
The introduction of new therapies has improved the five-year survival rate for people with myeloma — from 35 percent in 2000 to over 50 percent in 2020, according to the February 2020 review. However, racial disparities in treatment access and outcomes persist. According to the Multiple Myeloma Research Foundation, Black people experience longer wait times from diagnosis to starting a new treatment than white people. Black Americans are also less likely to receive certain standard treatments, such as bortezomib or lenalidomide. Additionally, compared with white people, Black people are 50 percent less likely to undergo an autologous stem cell transplant, which remains a big part of myeloma treatment, according to Grant. Black people are also less likely to receive new treatments, such as immunomodulatory imide drugs (IMiDs), proteasome inhibitors (PIs), and monoclonal antibodies, than white people, according to the American Journal of Medicine review. Nor are they likely to receive the three-drug regimen for multiple myeloma that is the cornerstone of treatment, according to Nahas. This regimen, which may include drugs such as dexamethasone, PIs, IMiDs, or monoclonal antibodies, is a first-line treatment for people newly diagnosed with myeloma. It may slow disease progression and improve survival. This poor access to newly approved and standard treatment for myeloma may be due to factors rooted in racism, including:
Lack of insurancePoor socioeconomic statusPoor transportation accessTravel difficulties
Black people may also face treatment imbalances due to problems with the healthcare system, such as referral and medical bias from doctors and poor care coordination.
Underrepresentation in Clinical Trials
Black people are grossly underrepresented in clinical trials. Although they account for 20 percent of people with myeloma, Black Americans make up only about 6 percent of all participants in clinical trials. That means drugs approved because of clinical trials are based on data that does not include enough Black Americans, according to Ghobrial. So we don’t know how well the drugs will work or their effects on the Black community. When clinical trials exclude a population, Grant notes, results are incomplete or generalized. Plus, trials can provide access to life-sustaining or -prolonging therapies after someone has exhausted all other treatments. And the inadequate representation of Black participants in these trials limits their access to these therapies, Grant adds. A study published in the Journal of Clinical Oncology suggests that Black people with multiple myeloma are willing to participate in clinical trials and appreciate efforts to include them. But barriers such as mistrust in medical research (due to a history of unethical research practices in medical research) and fear of side effects, getting a placebo (treatment with no active ingredients), or being randomly assigned to a trial group affect their willingness to participate. If Black people were given better access to treatments and clinical trials, it’s likely that their outcomes — and experiences with multiple myeloma — would be much improved.
