With Hope and Hip-Hop, a Father Finds New Purpose After Multiple Myeloma Diagnosis

When Oya Gilbert received his diagnosis of multiple myeloma (MM) the day after Christmas in 2017, it was, without question, devastating. However, the diagnosis also provided Oya a sense of relief because it came after a long stretch of deteriorating health, unanswered questions, and frustration with the healthcare system.

“For nearly two years, I went from doctor to doctor searching for answers as my health continued to decline,” recalled Oya, who lives in Waynesboro, Pennsylvania. “Instead of being heard, my symptoms were repeatedly dismissed. I was eventually labeled a hypochondriac and even accused of seeking drugs. Meanwhile, I was sick every single day and honestly believed I was going to die.”

The diagnosis came thanks to his life insurance company. Fearing the worst, Oya had sought to amend his life insurance policy so that his three children would receive a larger benefit upon his death. As part of the underwriting process, Oya had his blood and urine checked, and the insurance company found abnormalities in both. Oya took the findings to his fourth primary care physician. A few months later, he learned that he had MM, an incurable but treatable cancer of the bone marrow’s plasma cells.

Oya’s experience has made him sensitive to the challenges others face in their health journeys, whether it’s getting answers or access to care. The challenges, he noted, can be especially acute for individuals who come from communities that have been underrepresented or underserved in the healthcare system. Studies have shown that the incidence of MM in the U.S. is higher among Black populations than in white populations.

Oya sees ongoing and robust federal investment in medical research as vital to addressing such disparities and, more broadly, enabling further advancements in treatments.

“The treatments available today exist because previous generations invested in scientific research,” Oya said. “Continued investment means better treatments, longer lives, and hope for millions of Americans facing blood cancers and other serious diseases.”

Oya’s own treatment included a stem cell transplant in 2018 and ongoing maintenance therapy. Early in his blood cancer journey, Oya relied on Medicaid for access to care. Today, he depends on Medicare.

As Oya sees it, federal investment in access to care is just as critical as the investment in medical research. “Federal healthcare programs help ensure patients can actually benefit from those breakthroughs,” he said. “One without the other isn't enough.”

Oya said his diagnosis has given him a new purpose in life. He is the founder and CEO of the Health, Hope & Hip-Hop Foundation, a nonprofit organization that uses hip-hop culture to address health disparities and empower individuals to become stronger advocates for their health. He is also the host of the podcast, Hip Hope Hooray! Men Talkin' Health. He has served as an MM patient advocate, talking to policy makers and others about blood cancers.

Said Oya: “Instead of allowing cancer to define me, I chose to let it refine me.”