Myeloma Awareness Month: Organization provides resources for Blacks battling the rare cancer

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Myeloma is the second most common blood cancer in the United States. Blacks are at twice the risk of developing myeloma than White Americans and tend to get it at a younger age. (Image from Myeloma Link website)

By Nadine Matthews
Special to the AFRO

Suffering from a lingering ache in his back, Virginia resident Kelvin Yates chalked it up to “just getting” old or maybe having somehow pulled a muscle. Finally, after it became too much to bear, he went to the hospital where he was shocked to find out the true source of the pain. “They told me that I actually had multiple fractures in my back and that it’s usually caused by cancer,” he told AFRO  in an interview. Specifically, Yates has myeloma, or cancer of the blood. He says the news briefly sent him into a “downhill spiral” after realizing that, “this is a battle I would have the rest of my life.”

There is no cure for myeloma, the second most common blood cancer in the U.S. and the most prevalent among African Americans. It’s a type of cancer with the highest racial disparity in incidence and prevalence. Blacks are at twice the risk of developing myeloma than White Americans and tend to get it at a younger age. According to the National Cancer Institute, per one thousand Black males, 7.5 are diagnosed with myeloma versus four per 1000 for White males. As perhaps another symptom of the structural health disparities in America, Blacks are also the least likely to be offered the latest treatments or clinical trials.

Myeloma is stealthy. “People tend to find out after they break a bone or have multiple fractures and when they go to get that checked out. Or sometimes people go to the doctor for something that requires blood work like anemia and they find out that way,” Yates explained.

To address some of the systemic shortcomings that leave African Americans at a disadvantage when dealing with myeloma, the Leukemia and Lymphoma Society (LLS) launched the national outreach program Myeloma Link in 2017. Via community education, including church outreach using trained volunteers, education for healthcare providers, and collaboration with partner organizations, Myeloma Link also provides information about the disease, helps patients access care and more effectively obtain optimal treatments. 

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Yates adds that part of the work that Myeloma Link does is advising on what to look for as indicators they may have a myeloma. They also encourage the community overall to get regular annual checkups where it may be screened and caught earlier.

As a volunteer with Myeloma Link, which also partners with the University of Maryland Marlene and Stewart Greenebaum Comprehensive Cancer Care Center, Yates admits that his work has been immensely gratifying. “Just being able to reach out to them and give them information that I didn’t have when I was diagnosed feels good, because I didn’t know where to turn when I was first diagnosed.”

Because it can be such devastating news, there is the possibility that the person receiving it may need mental health counseling. Heather Burneson,  LLS’s senior manager, Patient & Community Outreach, said “In terms of what LLS can do, one of our jobs is to connect with all the local organizations so that we can be a resource to help people find that if the hospital does not provide that for them.”

Myeloma Link provides oncology professionals, available Monday through Friday, who can walk people through the whole process. They can also provide lists of local hematology oncologists that will guide patients to sources of financial assistance if necessary. “A lot of people don’t realize when you have a blood cancer, it’s not just going from your primary care physician to an oncologist, it’s going to a hematology oncologist. You really need that specialty,” Burneson said. 

To get involved with Myeloma Link please visit www.lls.org/myeloma-link