Why Black Americans Are at Higher Risk for Multiple Myeloma

Statistically speaking, multiple myeloma is more survivable than ever, according to Memorial Sloan Kettering Cancer Center. Now the not-so-good news: Your race could affect your outlook. Black Americans are about twice as likely to be diagnosed with multiple myeloma and to die from this cancer as white Americans, according to the American Cancer Society. That’s why it’s so important, if you’re a person of color, to be aware of the symptoms and advocate for yourself.

Multiple myeloma is a cancer of plasma cells—immune cells that help defend your body against infections, says the National Cancer Institute (NCI). While Black Americans make up just 12% of the U.S. population, per the U.S. Department of Health and Human Services, they represent 20% of new multiple myeloma diagnoses and 18% of deaths from multiple myeloma each year, according to a study on disparities in multiple myeloma published in the Journal of the National Medical Association.

What’s Behind the Disparities in Multiple Myeloma?

“We know that all multiple myeloma patients start with a condition called MGUS, or monoclonal gammopathy of undetermined significance. This precancerous condition is more common in Black patients,” says Samer Al’Hadidi, M.D., assistant professor in the Winthrop P. Rockefeller Cancer Institute Myeloma Center at the University of Arkansas for Medical Sciences in Little Rock, who has studied racial disparities in multiple myeloma.

“Why this happens, I don’t think anybody has a good reason,” he adds.

The question is, why are there such disparities in multiple myeloma risk and outcomes? Researchers have a few theories.

Genes

The risk of multiple myeloma seems to pass from generation to generation of African American families through their genes. “It’s not uncommon when you have a patient with myeloma to have other members in the family that have also been diagnosed,” says LaQuisa Hill, M.D., assistant professor at the Center for Cell and Gene Therapy at Baylor College of Medicine and Houston Methodist Hospital in Houston, TX.

That genetic link may also be why African Americans are diagnosed, on average, five years earlier than white people, says Dr. Hill.

Researchers have noted some genetic differences in Black people with multiple myeloma, but it’s been hard for them to pinpoint which exact genes might increase the risk. That’s in part because Black people have been underrepresented in clinical trials studying the link between genes and multiple myeloma, according to the Journal of the National Medical Association study.

Race, Weight, and Cancer Risk

While you can’t control which genes you inherit, your weight is one risk factor that is at least somewhat under your control. Black Americans have the highest obesity rate of any racial group, at 50%, per the U.S. Centers for Disease Control and Prevention (CDC), compared to about 41% in white Americans.

Researchers know that people who are overweight or obese are at higher risk of both getting and dying from multiple myeloma. The “why” is less certain. “Obesity is a known [multiple myeloma] risk factor, but the underlying biology behind that I don’t think is well understood yet,” Dr. Hill says. As for higher mortality rates, it may be because excess weight makes you more likely to have conditions like diabetes and heart disease that could affect your response to certain multiple myeloma treatments, according to Dr. Hill.

Lack of Awareness

Experts at the NCI say that there’s less awareness of multiple myeloma in African American communities, even among primary care doctors. If your doctor isn’t in the know about this cancer, they might attribute vague symptoms like back pain, tiredness, weakness, and constipation to age, and not test you for cancer.

Less Access to Care

Just getting to a doctor can be a problem for some people of color. “African Americans are more likely to come from low-income areas,” says Dr. Hill. “They just don’t have access to care.”

Even when people of color do have a doctor, they may not be able to afford medical care. Only 51% of Black Americans have health insurance coverage, compared to 73% of white Americans, finds the Kaiser Family Foundation.

Then there’s the issue of distrusting doctors, which runs deep in Black culture. The American medical system has a long history of racism and exploitation of African Americans, say experts at the University of Michigan School of Public Health. In one of the most notable examples, the Tuskegee Syphilis Study, doctors experimented on Black men with syphilis without their knowledge or consent. If you don’t feel comfortable seeing a doctor, you can’t get an accurate diagnosis.

Lack of Representation in Studies

Black people are less likely to get some of the latest treatments for multiple myeloma, like stem cell transplants and immunomodulatory drugs, says Dr. Al’Hadidi, because they weren’t included in the clinical trials that tested those treatments.

Dr. Al’Hadidi co-authored a paper in JAMA Network Open that looked at the number of Black participants enrolled in studies of chimeric antigen receptor-T (CAR-T) cell therapy, a new treatment for blood cancers like multiple myeloma. “We found that a minority of Black patients live in a county that is close to a center that can offer a clinical trial for this treatment,” says Dr. Al’Hadidi. Just 2% to 5% of people who received the CAR T-cell treatments in the studies he looked at were Black.

“There needs to be a bigger push to educate the community, patients, caregivers, on the importance of enrolling in clinical trials, so that we can truly know the benefit of these therapies in African American patients,” says Dr. Hill.

What You Can Do

The odds can seem frustratingly stacked against people of color when it comes to diagnosing and treating multiple myeloma, but they don’t have to be. When Black people with multiple myeloma get the same treatments as white people, they have even better outcomes, according to a study in Blood Cancer Journal that compared survival rates between the two races. This may be because Black people are less likely to have a “high-risk” type of multiple myeloma that has worse survival odds.

Knowing your family history is important, says Dr. Al’Hadidi. So is finding a doctor you trust and building a good relationship with them. You might feel more comfortable if you see a doctor who looks like you. You can search for one through a directory like BlackDoctor.org.

If you notice any new or unusual symptoms like bone pain, tiredness, or extreme thirst, make an appointment to get them checked out. And if you do get a diagnosis, Dr. Al’Hadidi suggests going to a center that specializes in multiple myeloma, because it will give you access to the most experienced cancer specialists and the latest treatments. Don’t let a lack of transportation or money be a barrier. Ask your doctor to recommend a clinical trial near you or see if you can schedule a telehealth visit with a myeloma specialist.

If you’re not comfortable with your doctor’s diagnosis, ask for a second opinion, suggests Dr. Hill. “Patients have to be proactive in terms of making sure that they’re getting the best healthcare they can, especially if they feel like they’re not being heard or listened to.”

Takeaway

Though the statistics can sound scary, multiple myeloma is a rare cancer overall. For context, around 35,000 people are diagnosed with it each year, compared to 300,000 people diagnosed with breast cancer and 288,000 with prostate cancer, says the American Cancer Society. The fact that multiple myeloma is more common in Black people is just reason to be more aware.

“While I don’t think people need to be in fear, it is important that they maintain routine healthcare, go in to see their physician to have blood work done annually,” Dr. Hill says. “Then [the cancer] can be caught early on, and the diagnosis can be made sooner, rather than when the disease is more advanced.”

Notes: This article was originally published July 17, 2023 and most recently updated July 18, 2023.