Oya Gilbert: Raising Awareness of Multiple Myeloma Disparities

Age: 54Waynesboro, Pennsylvania

Oya Gilbert was diagnosed with multiple myeloma the day after Christmas, 2017.

“It wasn’t an easy road to diagnosis,” remembers Oya. It all started in 2015 when he experienced what he thought was a heart attack, but when he went to the hospital, he was told he was having an anxiety attack. Oya followed up with his primary care provider, who didn’t pay attention when he said he wasn’t experiencing anxiety and was sure something physical was causing his “episodes.”

“As the years progressed, I started having more of these episodes—they were more frequent, more violent—with shortness of breath, fatigue, and tremendous pain,” Oya recalled. This continued for several years, affecting his work, quality of life, and relationships. Oya went through a series of doctors, including specialists, looking for answers. “At some point, they just labeled me a hypochondriac and started prescribing me anxiety pills,” Oya said. As a result, the medication made him extremely tired (on top of the fatigue he was already experiencing from the not-yet-diagnosed blood cancer) and he ended up having a (minor) car accident.

“Eventually, I wound up feeling like I was just going to die because nobody was giving me an answer, so I tried to increase my life insurance policy to put my children in a better financial position,” Oya said. It was the insurance company’s doctors who discovered the protein markers in his blood and urine, which led to a bone marrow biopsy, and his diagnosis of multiple myeloma. While it was devastating news, Oya was relieved to finally know what was wrong. “It was validating. Two years of making me think I was going crazy, but I knew that these symptoms were real,” he said.

Oya reflects on his oncologist delivering the diagnosis. “I remember saying to myself, did this guy just say I have cancer? And then did he just say, it can’t be cured?” recalled Oya. “It was overwhelming. I did a little crying. I just wanted more time.” The doctor explained to Oya that, even though his disease was in stage I, they needed to get him started with treatment as quickly as possible. “I was diagnosed in December of 2017. I started treatment on February 1st, 2018.” Oya’s treatment included a combination of bortezomib (Velcade), lenalidomide (Revlimid), and dexamethasone, also referred to as the VRd regimen. Within a month or so of starting treatment, his cancer markers were decreasing and he began to feel better.

As the next step of Oya’s clinical care, his oncologist discussed a stem cell transplant. It was explained to him that, while not a cure, the transplant could extend his life. “I told the guy, if this is something that could give me an opportunity to live longer, I want to discuss that further and pursue that.” Once he qualified for the procedure, Oya had to travel more than an hour away to a major medical center in Hershey, Pennsylvania, for the transplant.

Oya’s cancer is currently under control. Throughout his journey with multiple myeloma, Oya has never experienced full remission, but he feels a lot better now than he did prior to his diagnosis. He does experience neuropathy as well as shortness of breath and back pain at times. “My biggest challenge is trying to figure out if it is associated with cancer, chemo, or just getting old,” he said. “I’m alive, so that’s good news. And I am healthy-ish, which is also good news.”

He continues to receive Revlimid to keep the cancer under control. However, as he’s educated himself more about his disease and its treatments, Oya made the decision to minimize his treatments. “I decided not to pursue trying to reach zero for a disease that cannot be cured.” It didn’t make sense to Oya to continue with the harsh treatments because of the trauma they were causing to his body. “Let’s talk about that if the disease starts progressing again.”

Looking back at his journey with multiple myeloma, Oya sees many missed opportunities. “Just different things I discovered that were just not handled correctly. The communication wasn’t really that great. I was just given a pamphlet and left to figure it out on my own. Clinical trials were never discussed.”

When Oya learned about the higher rate of multiple myeloma in Black people, he was stunned. “I live in a rural area—predominantly White. It’s difficult for doctors to know anything about African Americans if you rarely see them, or maybe have some prejudgments about them. When I look at the disparity in my particular case, it leans to geography and the lack of education for the doctors,” Oya said. “This region is known for prescription addiction,” he added, “So, they were thinking that’s what I wanted. They just didn’t listen. If they’d listened, I think we could have gotten past a lot of those issues leading up to my diagnosis that just got brushed off.”

Because of the way Oya’s been treated during his journey and some unsupportive conversations he’s had with his medical care team, he’s had to replace several providers. He recognizes the importance of advocating for himself and for other patients like him who don’t know what they don’t know.

Drawn to make a bigger impact, Oya proudly launched a nonprofit in 2023—the Health, Hope, & Hip-Hop Foundation— to close the gaps and improve the medical mindset of our communities of color. His mission is to bring health education and equity to underserved communities across the US through honesty, transparency, and the uniquely connective power of hip-hop. This foundation will address health disparities at the grassroots level, driving them all the way to the White House.

“I don’t think you can have true sustainable change without policy changes.” He wants to remind our policymakers that people get late diagnoses, suffer, and die unnecessarily while new policies to reduce cancer disparities are debated.

“We now understand a lot more about cancer disparities. We also have the brightest minds and researchers from all over the world who are trying to address these disparities. But we are still here—still talking about it,” Oya said. “We must start acting. I come from an urban community—a horrible childhood—all the way to this point, trying to contribute to society, and raising my children. I’m talking to you as a multiple myeloma patient who happens to be African American—please get something done.”