Facing Myeloma: Yelak Biru & Kent Oliver on Fighting Cancer, Community, and the AI Future of Care

Yelak Biru:
I'll start with question for you. Kent, you were diagnosed with myeloma in 2015, at the age of 34 with two little children. I, too was diagnosed very young with this disease at age 25.

For me really, being that young and being diagnosed with an incurable cancer called multiple myeloma, I really felt a mix of emotions, fear, uncertainty, and really also related to that, a very stubborn determination to fight. There were also a profound sense of isolation.

How is the diagnosis experience for you at a fairly young age?

Kent Oliver:
You mentioned in reference we had two young children at the time. So at the time we had a six-month-old girl and a 2-year-old girl. And so it was a real, I mean, I think back to that, it was a real gut punch from a standpoint of you're at that phase in life where you're starting so many things. You're starting the idea of growing a family. You've got the opportunity to see them take their first steps, and have their first words, and all those things.

And so getting that diagnosis was such a difficult thing at the time, just given the uncertainty of what is this going to look like for these girls? What is this going to look like for us as a family?

And so from that perspective, it definitely was probably... That was the most difficult thing. You mentioned isolation, and I definitely felt like that was, even though Candace and I obviously had each other, there was just a lot of uncertainty around what does this actually even mean long term? How do we fight this disease? And determination certainly set in.

There was some fear, and there was some other emotions probably, that certainly took over. But I think there was that aspect of, well, what now can we do to make this experience one that hopefully we can all grow from, and become stronger and closer as a result.

Yelak Biru:
Kent, you give back to the myeloma community in so many ways specifically and especially in your community and also to the myeloma community. One of the ways is the love for life stand-up comedy benefit in your hometown of Hattiesburg, Mississippi, the IMF is a great beneficiary of that event. And you and Candace through Laughs 4 Life, have funded several Brian D. Novis junior and senior grants totaling almost half a million dollars. Why did you decide to do this fundraiser at all?

Kent Oliver:
Initially, so I had a stem cell transplant in the spring of 2016, so several months after my initial diagnosis. And it was at that moment, as I was recovering from that stem cell transplant, that Candace and I had a few different folks that came in to be caregivers, at the time we were in Nashville doing that. And for the first time in a while, being around those that we truly, just truly cared for, we laughed. And there was a recognition, I think that it had been a long time since we had truly laughed kind of an unencumbered laughter. And so as I thought about what do we do to take this and do something, because I'll be honest, whenever you're diagnosed, you want to control what you can control. And there's an aspect of that that is, "Hey, I'm going to put my all into this and do the things I can physically and emotionally and whatever it might be to control that."

But then there was also an aspect of, "Hey, I want to be able to make a difference somehow, even a small difference." And so I think that is what ultimately kind of triggered our hope, and being able to do something that would bring the community together truly in laughter, and do so in a way that would raise awareness for obviously myeloma research and what we could do around that. But then also in many ways, almost think those that kind of had been there for us in those difficult times to hopefully generate some smiles long term.

Yelak Biru:
You also give to a local hospital and you and Candace have funded what you call a smile storm. Tell me about that.

Kent Oliver:
Yeah, so we started recognizing, we had a couple of real close friends who had been so supportive of us early on, and they had a child that was born with a heart condition that's very rare and very serious. And so they quickly had to go through open heart surgeries at very young ages. And it made us very aware of just all those feelings we talked about, about isolation and about fear and uncertainty.

And then I started, I think the connection was, "Gosh, what is that like whenever you're a child and when you're the parent of a young child?" And so we started brainstorming ways we could take this concept of laughter and smiling and help that play out and other avenues.

And so Children's of Mississippi is the state's only children's hospital, and so we're really proud of what we've done there. We have a child life space that is really whimsical and unique and allows hopefully children and families that are going through those difficult times and feeling that isolation and that fear, to be able to again smile. And that goes a long way.

Yelak Biru:
I think, I don't know how many people outside of your community come to see the event in your community, but my experience is Hattiesburg shuts down for that Friday and everybody really is coming to your event. So kudos to you and Candace and everyone else who is participating and supporting you in this journey.

Kent, you Sylvia, our VP of Development, and I met last fall in Hattiesburg, and we talked, and I remember you asking, "How can I do more in terms of raising funds for the IMF and giving back to the myeloma community?" What struck me in that conversation is that you didn't just want to raise funds, you wanted to ensure that your efforts would be transformative. What does it mean to you to make transformative change?

Kent Oliver:
I think about transformative, and you used a word in that conversation that really stuck out with me. It's about truly being disruptive. Disruptive in a way that can really change outcomes for people. It can change outlooks for people as well. And so you think about medicine, medicine's got a lot of things that I think we would all agree, probably need to be transformed. Some of those are just on the basic level, on a communication and other things. Some of those are access related.

All that to be said, really transformative change is that type of change that not only impacts individuals now, but it impacts their doctors, their nurses, all those that are part of that overall care team in a way that lasts well into the future. And I think that's one of the things that I'm most interested in is how do we make a lasting difference in a very profound way.

Yelak Biru:
You are here in Los Angeles with Candace this past weekend, giving out your grant to one of the junior grant recipients of the Brian Novis grant. And one the things that you said stuck in my head with that, you may not necessarily be the beneficiary of a cure yourself today, but the research you hope will be transformative and be able to help someone down the line. Talk a little bit more about that.

Kent Oliver:
Yeah, so I think that it comes down to... There is a lot of really positive traction around the space of myeloma, and that's encouraging on so many levels. I think that in many cases we kind of decide, "Hey, what is the one thing that's going to change outcomes?" And in many cases, it's not the one thing that's going to change outcomes, it's the collective effort that's going to change outcomes.

And so research from an individual grant recipient coupled with grant recipients all around the globe. And I think that's one of the things that really is intriguing about what the International Myeloma Foundation does, is it brings together minds and researchers and those that truly care about this disease, in a way that can have that transformative difference. And so all those things collectively are much more beneficial than just one individual research grant and one individual project for that matter.

Yelak Biru:
I come from a technology background, having worked for Fortune 50 companies focusing on data and analytics. Kent, you too have a passion for technology. So when we were in Hattiesburg in that small restaurant, and you asked me about making a transformative change through your fundraising efforts with IMF, we discussed the potential of using data, machine learning and artificial intelligence to help create a more personalized experience for the patients that we serve.

But our focus was not necessarily the technology or the use of the technology, but to ensure that patients don't feel alone. Access in the rural America was also as equal as it was in non-rural America. And we talked about the technology that we were wanting to bring, the Myeloma Knowledge Platform, which was built through partnership with others, and we are now gearing up for a soft launch of MKP.

This platform really digitizes patient information with their consent, and that information is then used to create a more personalized recommendation nudge, and experience for myeloma patients on our website.

I'm very excited about the Myeloma Knowledge Platform. It's potential really to close this time to hope gap, and the guiding force it will become for myeloma patients.

Are you excited as I am for the Myeloma Knowledge Platform, and why?

Kent Oliver:
Yeah. This is where we get to geek out together. I am truly, I think about, we talked about some of the challenges that exist in medicine, and one of those is just the ability to get good access in an efficient time, and really when you need it most.

On a daily basis, I utilize generative AI for a variety of things to help me become more equipped, to be better at my job, better, honestly, even as a husband and a father. Things about things that we're thinking about long-term. And so the idea of being able to capture some of that technology and to be able to utilize that for patients and caregivers that are truly in that isolated moment trying to figure out what is it that I can do next? And to have it be more than just, gosh, we've all taken part in, been on a website and had a chat bot that just seems like it doesn't answer our questions, right?

I am so excited about what has happened with the development of this, and thinking through how do we truly make it transformative in a way that benefits those that need it most at the time in which they need it most.

Yelak Biru:
So when we are launching the Myeloma Knowledge Platform, we'll be launching also this chatbot that you mentioned, called Myelo. Myelo is the first AI-powered responsive chatbot to provide compassionate support to patients, their care partners, and also healthcare professionals. Myelo will respond to queries in multiple languages by leveraging advanced natural language processing techniques and machine learning algorithms.

Basically, any patient from around the world can visit the IMF website, Myeloma.org, and ask a question. Myelo will respond in the patient's preferred language. Myelo will also navigate the IMF website to find most pertinent, most relevant information for each visitor's questions. When Myelo needs assistance, it can always point visitors to the IMF's fully staffed info line for an in-person call.

So talk a little bit about more of your excitement about Myelo, and if you are going to get Myelo for the first time, what would be your first questions for this chatbot? You and I have seen Hello World as being one of the programming language outputs. What would be your first question for Myelo the chatbot?

Kent Oliver:
That's a great question. And so for me at this point in this stage, and I guess my... I would love to ask what are reasons I should be hopeful about the future of Myeloma? And so that's the type of thing that I feel like for me now where I've become more, I guess, educated about what is happening out there. I'd love to see Myelo give me some of those reasons.

And I think it's pretty apparent in just some of the initial tests that we've done that this is going to be a really game-changing type of thing. It's a type of thing that doesn't, I mean, obviously this is specific to myeloma, and I think that's what makes it even more unique, but also think that this is the type of thing that has the ability to change medicine in the way that so many approach whatever disease they may be battling.

So I think that just the idea of myself, Candace, even the girls at some point, as I think about, as they grow up and they start to get more and more aware of maybe some of the things that I've got going on inside of me, they can be better equipped with answers from sources we can trust. I think that's a huge component to what Myelo is going to bring to the table, is this idea of getting good relevant information from those that know it the best. And I think that's something that's really exciting about.

Yelak Biru:
My final question for you, Kent, is you alluded this towards the beginning of our conversation. Why, why give? Why should anyone, including yourself and others touched by the IMF give to the foundation?

Kent Oliver:
Yeah, so obviously the IMF holds a special place in my heart for the things that it does. But one of the things that I'm, I guess I'm most thrilled with in terms of my relationship that's continued to develop here.

When I give to any organization, I want to know that those dollars are being used in a very specific way, an intentional way. That they're done so in a way that has the ability to not only address maybe the symptom, but also thinking long-term. And those are all things that have been captured within my own personal giving to the International Myelo Foundation.

As I think about others and what they can do, I think about just like this, we're not afraid to be disruptive. And I think that's something that I think any of us that give to an organization and want to see change as a result of that, you want to see the recipient of that be willing to take on the ability to be disruptive, and to make some changes that potentially allow for truly profound and groundbreaking type of outcomes.

And so from that perspective, gosh, there's no better organization for me personally, to obviously be associated with. And obviously I'm very thankful for those that have given through Laughs 4 Life to the International Myeloma Foundation. I'm encouraged about what we can continue to do to grow that partnership, and to grow the outcomes that come from all the things that y'all are doing.

Yelak Biru:
Thank you for your time today, Kent. Let's keep the conversation going virtually offline and into the future, through Myeloma.org, through Myelo, and through the Myeloma Knowledge platform. Thank you.