One hundred thousand men and women per year lose their lives to multiple myeloma each year, according to the National Cancer Institute. These deaths transcend social status and career choice.
Roland S. Martin recalled how former Raiders player Elijah Alexander succumbed to the disease after being dismissed by healthcare professionals at the Black Health Matters Fall 2023 Health Summit & Expo. “He kept complaining about his feet hurting. The doctors kept saying, ‘Oh, it’s from your career.’ He eventually died of this very disease,” said the journalist, author, and media personality.
Advocacy can make a difference in how multiple myeloma is discovered and treated.
Martin moderated a discussion with Denise N. Bronner, PhD Director Diversity, Equity, and Inclusion in Cánical Trials Immunology Portfolio Jansen and Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation at the summit. They discussed health disparities associated with this form of cancer. The trio was introduced by actor and producer James Pickens (Grey’s Anatomy).
Calloway-Campbell’s husband was misdiagnosed with arthritis in 2017. He had multiple myeloma. She emphasized the importance of self-advocacy. “Nobody’s going to take care of you like you, not even your family, so you have to know what signs and symptoms are of many different diseases,” said Calloway-Campbell.
How can multiple myeloma be misdiagnosed?
Myeloma lesions were mistaken for arthritis on the scans of Calloway-Campbell’s husband. Dr. Bronner was forced to advocate for her father, who suffered from multiple myeloma when healthcare workers interrogated him. They assumed he was taking drugs when he arrived with fluids on his lungs. Without her stepping in, they might not have asked the right questions. Eventually, they got “lucky” with a cardiologist who closely examined the bloodwork and realized that multiple myeloma was a possibility.
Martin cited how medical professionals can stubbornly refuse to set aside their assumptions.
“You have medical folks who say, who are you? I’m the expert,” he said. “I know what’s better.”
He raised the stereotypes of the angry Black person that patients have to fight against when facing this type of challenge.”
Prominent figures of the past are frequently used to illustrate the problem of systemic racism in the medical field. “They always talk about prejudice or racism in a historical sense,” said Dr. Bronner. “They’ll bring up Tuskegee, right? They’ll bring up Henrietta Lacks, but I said this is persistent; it’s been here, it’s ingrained in there. You have a lot of doctors who continue to have these certain ideas about you because you’re Black.”
How can medical misconceptions contribute to misdiagnosis?
Pain is a symptom of multiple myeloma, causing potential friction for patients subject to the horrors of medical racism.
“It’s a notion that Black people have a higher tolerance of pain,” added Dr. Bronner. “That’s also an issue.”
“Myeloma is a journey in and of itself, and when you add the disparities that now we’re talking about, we’re not seen, we’re not heard,” said Calloway-Campbell.
The treatment experienced by Dr. Bronner’s father was not rare. According to the Proceedings of the National Academy of Sciences of the United States of America (PNAS), “Black Americans are systematically undertreated for pain relative to white Americans.”
Calloway-Campbell described how Black patients are treated when seeking help for their pain. “Bone pain, and it’s often in your back. It’s one of the symptoms, so when you present to the ER, that’s what it is,” she said before listing a question Black patients are frequently met with. “What narcotics are you trying to get?”
Dr. Bronner recommended questioning the doctors you’re dealing with. Calloway-Campbell agreed. “Doctors are not proactive in doing the testing to see if multiple myeloma is a possibility,” she said. “When you look at many medical textbooks, we’re not there,” Dr. Bronner added. “When you look at some of the medical research that’s out there, the papers that have been published, we are not there, so you have to say to yourself what their knowledge is based on.”
Take Action!
The session provided valuable and practical tips for advocating for yourself if you suspect you’re experiencing symptoms associated with multiple myeloma.
- The acronym CRAB indicates four common symptoms you might want to consider when deciding if you should ask to be tested for multiple myeloma. C stands for high calcium, R stands for high renal urinal counts, A stands for anemia, and B stands for bone pain.
- Pushing on your doctors can result in better results. Advocate vocally and in writing. They are the experts in medicine, but you are the expert in you.
- Â Pay attention to your bloodwork and track any change in the numbers to arrive armed with facts.
This session was presented by Janssen.
The panel:
Roland S. Martin, Journalist, Author, and Media Personality
Denise N. Bronner, PhD, Director Diversity, Equity, and Inclusion in Clinical Trials Immunology Portfolio Janssen
Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation
