Oya Gilbert Urges Self-Advocacy, Emotional Support for Patients With Myeloma

Self-advocacy and culturally relevant communication are critical for patients with blood cancer, particularly those from underserved communities, said Oya Gilbert during an interview with CURE at the 2025 Annual Blood Cancer Heroes event.

Gilbert, who was diagnosed with multiple myeloma in 2017, reflected on being nominated as a blood cancer hero, calling the recognition unexpected and deeply meaningful. Drawing on his background in hip-hop, he explained how music and storytelling can help health messages resonate more authentically than traditional outreach methods.

He also shared his experience being misdiagnosed for two years, and encouraging newly diagnosed patients to ask questions, seek second opinions and bring support to appointments. Now nearly eight years post-diagnosis, Gilbert emphasized patience, emotional well-being and informed decision-making.

CURE: What was your initial reaction when you found out you were nominated as a blood cancer hero?

Gilbert: Shocked. Definitely shocked. The person who nominated me had to tell me about it. I said, “No, not really,” which you wouldn’t expect. Then she said, “I think I’m going to nominate you,” and I replied, “Don’t waste your time. I’m not going to win.”

So, when I got the call, I thought it was a spammer. We played phone tag for a bit, and when we finally spoke, she said, “No, this is real.” I was very surprised and really delighted. I’m very excited to be here.

What part of your work do you hope this nomination helps highlight for patients or families who may not know your story yet?

I hope it shows that thinking outside the box matters when trying to reach communities and families. I came into this space with a hip-hop background, and as I joined steering committees and advocacy groups, I noticed the messaging still felt antiquated. We had flyers, some animation, maybe representation, but it still wasn’t truly reaching the community we said we wanted to reach.

Hip-hop and R&B have been the soundtrack of my life, and that culture touches every part of the world. I realized it could be a tool, a vehicle, to communicate health messages in a way that resonates more directly, especially with the communities we are trying to reach. I hope organizations can look at this approach and consider how to connect more authentically.

Your journey included years of misdiagnosis. What do you want newly diagnosed patients to know about speaking up and pushing for answers?

Please be your own advocate. You have to be your best advocate. I was misdiagnosed for two years and saw just about every type of specialist you can imagine. None of them got it right.

What’s unique about my story is that I was not diagnosed by the medical professionals I was seeing. I tried to increase my life insurance policy because I was on death’s door, and the insurance company discovered the issue. I then took that information back to my doctors. By that point, I was on my fourth doctor.

If I had listened to the first answers I received, we wouldn’t be having this conversation. Don’t take the first information you get as the truth. Even if the answer turns out to be something serious, it’s better to know what’s really happening so you can address it.

Your foundation blends hip-hop creativity and advocacy. As a musician, how does this approach resonate with people living with myeloma?

It’s very new to this space, even though it feels like it should have existed already. I did a small, impromptu rap about myeloma with the International Myeloma Foundation. It wasn’t a full production, but I did it with intention.

When it was posted, the reaction from the myeloma community was overwhelming. People felt seen. They said, “We’ve got our own rap song.” It created a different level of engagement and awareness.

Our foundation uses hip-hop to address broader issues affecting Black and other underserved communities. While I have myeloma and we naturally lean into that space, our mission goes beyond one disease.

You’ve been vocal about disparities in myeloma, especially among Black American men. What barriers do you see most often?

To be completely honest, one of the biggest barriers is us as men. Historically, we are not great about prioritizing our health, and that’s especially true for Black men. We have to change that mindset.

Many of us were raised to “tough it out,” not show emotion or seek help. That thinking is harmful. It’s OK to go to the doctor. It’s OK to seek mental health support. Changing that mindset is the first step before we can even talk about clinical trials or advanced care options.

How do storytelling, humor and creative expression help patients feel seen and supported?

Laughter is powerful. Music, not just hip-hop, has a real effect on how we feel. There’s science behind it. Music can motivate, uplift and connect people.

Hip-hop, in particular, comes from the same underserved communities we’re trying to reach. At its core, it’s about storytelling. That makes it a natural fit for health advocacy. It helps messages resonate because it reflects real life.

For someone newly diagnosed, especially from an underserved community, what early steps do you encourage them to take?

Bring another set of ears with you to appointments if you can. You won’t catch everything, and it’s overwhelming. If no one can come with you, ask permission to record the visit so you can listen back later.

Ask questions. There are no dumb questions. Don’t be afraid to challenge what you’re told or to seek a second opinion. You’re not discrediting your doctor. In cancer care, there are no perfect decisions, only sound ones, and those require information.

Give yourself grace. It’s OK to feel upset, scared or overwhelmed. Just don’t stay there. Your world changes when you’re diagnosed. I’m living proof that survival is possible. I went two years without treatment, and in a few weeks, I’ll mark eight years since my diagnosis.

What conversations with patients or community members stay with you the most?

Talking with patients keeps me humble and grounded. People often say I inspire them, but the truth is those conversations are cathartic for me. They remind me how grateful I am and why this work matters.

Some people don’t have the strength or mobility to advocate for themselves. Knowing I can help be a voice for them makes the work meaningful, even on days when I just want to step back and be a patient.

What progress do you hope to see in equity, awareness and support for myeloma over the next decade?

I want to see more investment, not less. We are closer than ever to better treatments and, one day, a cure. Collaboration is key. The myeloma community is strong, but organizations need to work together more and focus less on branding and more on patients.

Progress will come through funding, participation and partnership.

What does being here tonight allow you to reflect on about your advocacy journey?

This is deeply personal. I never expected recognition for this work. At first, I just wanted a diagnosis. Then I wanted to be a patient. Now, I’m an advocate.

This moment feels like confirmation that the work mattered. My daughter is here tonight, and she was with me at every appointment early on. Seeing this come full circle means everything to me.

I’m grateful and humbled. There are so many people who have been doing this work longer than I have, but I’m thankful for the opportunity and the recognition.

Transcript has been edited for clarity and conciseness.

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