[00:00:00] Speaker A: Foreign.
[00:00:08] Speaker B: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experience mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope living beyond cancer, you find hope, healing and empowerment.
Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:01:12] Speaker C: Hello, everyone. This is Gail, AKA Sunshine.
Today we have Valerie Trum joining us around the campfire and we're going to do episode one today of a two part episodes our series. So, Valerie, thank you so much for joining us.
[00:01:28] Speaker A: Awesome. Thank you. Thank you all for having me. I'm excited to be here.
[00:01:32] Speaker C: So we're going to be talking about clinical trials. In both episodes today, we're going to focus on more understanding challenges and root causes of inequities. So just to kind of give you a taste of where we're going. So, Valerie, what I'd love to do first is just get to know you a little. So can you tell us a little bit about yourself and if possible, please include one fun fact.
[00:01:54] Speaker A: A fun fact.
Well, I am Valerie Trainum. I live just outside the suburbs in Chicago, Illinois.
I'm a country gal at heart, originally from the Virginia southern part of Virginia area.
I've been here for about 12 years now. Kind of gotten used to everything in the Midwest except the traffic and the cold weather.
So it's kind of a warm day out today. So I'm excited about that.
But I am a multiple myeloma and breast cancer thriver. I've been on my cancer journey for about 10 years, celebrating 10 years this year of the myeloma. Thank you. And six years of the breast cancer right now. I do a lot of patient advocacy work and just making sure that the patient voice is heard, educating communities of color, particularly about clinical research.
You know, we think about cancer statistics and, and you know, just that underrepresentation that we are looking at. So I try to get out and educate those communities on clinical research and, you know, get them involved so they understand what it is, but also what it is not there. So, yeah, in my free time, I enjoy being out in the woods doing a little hiking, biking.
I do a little reading.
And I'd say one fun fact about me is I like anchovies on my pizza. I know a lot of people like anchovies, but I'm like, yes, bring them on.
[00:03:40] Speaker C: All right, well. And that is the first time anyone has Shared that fun fact, as far as I know, on our podcast. So thank you, Valerie, for sharing that.
[00:03:49] Speaker A: Of course.
[00:03:50] Speaker C: So I want to go back to what you were just kind of saying.
What are some of the historical, systemic social factors that have contributed to the ongoing disparities in health care access and particularly for what we're talking about, clinical trial participation and also specifically for racially diverse communities and people with disabilities?
[00:04:14] Speaker A: Yeah, so I think about, you know, when it comes to medical mistrust, you know, in these groups that you just mentioned, it's deep rooted, you know, it's, you know, historical, it's systemic and it runs deep.
It runs from a legacy of, I would say just exploitation, neglect, exclusion, those types of things, you know, in healthcare and medical research.
And we think of some of the more common ones that come to mind. Some of the common examples that come to mind are the Tuskegee, the Tuskegee Syphilis study.
This was a study where black men were essentially deceived and denied treatment.
Another that comes to mind is the Henrietta Lacks, you know, the unauthorized use of her sales that are currently been used in health care for many, many years.
Also things like the forced sterilization of women. Those types of things come to my mind when I think of some of those pass hurts and things that in a combination of just implicit bias that we don't even think about the unequal treatment and lack of representation in Clin trials.
[00:05:47] Speaker C: When you say lack of representation, I don't know if it's a conscious or unconscious decision on the part of the doctors, but are they basically not asking people of color or with disabilities to participate?
[00:06:00] Speaker A: Yeah, yeah, it is a combination of that.
We do find that some patients are not asked if they want to participate in a clinical trial. And again, it's because of bias. It's that assumption that, oh, well, you're too busy or you may not be able to get back and forth to the treatment site and I didn't think you would be interested. It's those types of things.
Yeah, yeah.
[00:06:30] Speaker C: So you mentioned this, that there's some deep seated mistrust and I'm wondering how we can fix that. Basically, how can institutions and clinical researchers work to build more equitable and trusting relationships?
[00:06:49] Speaker A: Yeah, I say that it ultimately starts with just knowing that trust.
It's about that trust and trust is earned. When communities feel seen, they feel heard, they feel respected and they feel empowered and not just studied.
There are a lot of times when it's, oh, we want to get you involved in this so we can Raise our numbers so we can reach without ever thinking about the person behind what you're trying to do.
So I always say trust building is that very first step.
It's so important, I think that those harms that I just spoke about, they have to be acknowledged. You have to acknowledge those openly.
Because until you acknowledge those and actually say, hey, yes, this happened, we know this happened, and then talk about the things that are in place to keep those things from happening again.
I think you have to also include community voices at every step of the way.
You can't just swoop in and say, hey, we're doing this trial and we need you to be a part of, involves involving these people in the study design, in that decision making process and, and just at every step of the way is what I say. You know, make sure that you have culturally relevant educational materials and things of that nature.
Another thing that I think is very important is investing long term.
Don't just come in to get our information.
Come in, get to know us, really get to know what our needs are within the community and let's work together on meeting some of those needs versus just coming in, souping in, getting what you need and then we never see or hear from you again. So invest in the long term. You know, come in and connect with our community leaders and tell them what you need, but don't just tell them what you need.
Seek to find out how you can help to make the community better. Because when the community is better, individuals are going to be more likely to help and say, yes, I'll participate because I see the value that it could bring for me, if not for me, my loved ones down the road.
[00:09:36] Speaker C: Today's episode is brought to you by Lilly. Cancer changes lives. Clinical trials can change cancer.
To learn more, Visit cancer clinical trials.lilly.com that's cancerclinicaltrials.lilly l I l l y.com and would you say that involvement, just that, that asking, that talking are those ways to make them feel seen and heard? And would you add, would you add more examples of how to do that?
[00:10:10] Speaker A: Yeah. So you know, getting involved in the community, coming in, finding out what, what goes on in the community, finding out those needs that the community needs, getting to know the people that you're trying to reach? Because we are people, you know, we, we want to be seen and heard and, and, and we want our opinion to, exactly, to count as well.
[00:10:40] Speaker C: Yeah, that's exactly the word that just came to mind is your opinion, your thoughts and feelings on the matter.
What would you say, are some common misconceptions and concerns that you've encountered that have discouraged participation in clinical trials.
Yeah.
[00:10:58] Speaker A: So, you know, just speaking from experience, you know, prior to getting on this journey, I had my preconceived notions about clinical research.
It was a last ditch effort. I thought that I did too. Yeah. It's like, wait, I'm, I'm not dying, am I? Aren't. Aren't there other things that could be done?
Things like helping people understand that medications that have come to market that have not been tested on these populations may not work as well. You may not see the same type of results that you're seeing in other populations.
Just making sure that people understand that there's a reason that we want you to be in the clinical trial. And I'm going to go back even a step further. We think of clinical research and a lot of times we think of, I don't want to be that guinea pig.
And I thought that too. I didn't want to be a guinea pig. You know, what is this? I didn't want to get a placebo or sugar pill. You know, I often thought about that.
But then once I learned that everything, even that Tylenol that I take, that ibuprofen that I take, it went through the process of a clinical trial. It didn't just appear on the market.
So I think about, yes, it's been around for years and years, but it had to go through that same testing to be brought forward there. So it's just, I call them myths. You know, you have to debunk the myths in order to make things come alive.
And most clinical trials, people don't understand that you're not going to get a sugar pill. You're going to get the standard of care, you're going to be guaranteed to get the best, and then you may get something that's even better.
So I think when people have understanding of how that works, they are more likely willing to participate in a clinical research.
[00:13:05] Speaker C: Yeah, you mentioned myths. Do you think there are any myths in particular that stand out with the communities that we're talking about? Are there any others?
[00:13:16] Speaker A: Yeah. So I think about, you know, how, how am I going to make this happen? A lot of times it's, you know, you have to go to work, you can't. If it's something that you have to take off, you know, there's this myth, well, I'm going to have to be laid up in the hospital the whole time or, you know, things like that. And that's not the case. There are so many trials now. And, and, and when I say clinical research, we have to understand that it isn't always a trial. It could be something as simple as a study, an observational study or, you know, a questionnaire that you complete. All of that is a research as well.
It's just a clinical trial piece that is going to really make change when it comes to new medications coming to the market.
So it's just addressing all of those things.
And I said, you know, the myth about it being the last result, the myth about you getting the sugar pill, the myth about, you know, it's going to cost you out of pocket. I, you can't pay, you know, what it costs out of pocket to have that done. All of those are myths, untruths.
Wow.
[00:14:35] Speaker C: Yeah, I have, I've learned so much about clinical trials from you today and from the other episodes we've done in this series because like you, I thought it was a last ditch thing. I didn't think it was something.
I didn't think of it in terms of being able to help advance science, research and all of that. And I think that's an important distinction.
Is there anything else that you'd like to share just in terms of kind of the background, the root causes, the underlying challenges in terms of clinical trials in these communities?
[00:15:11] Speaker A: Yeah. So, you know, I think of the challenges and a lot of them are, you know, the, the disparities that these communities deal with. A lot of times it may be a language barrier, it may be a transportation barrier, it may be an access barrier or something of that nature. But all of those things have to be kind of addressed before we can kind of move on to even say, would you consider being in a clinical trial?
And I say that to say it's, it's about educating the community because these communities, a lot of these communities want to actually participate and make a difference. They just don't understand what the process is and, and they have difficulty with, you know, getting over some of the barriers that are, that they do face.
[00:16:06] Speaker C: Yeah.
Well, Valerie, thank you so much. I get to spend another episode with you, but we're going to bring this one to a close. Next time we're going to take, take it a little deeper. We're going to talk about breaking barriers and creating change in clinical research. So, Valerie, thank you so much. And we'll see you on the next episode.
[00:16:26] Speaker A: Awesome. Thank you.
[00:16:28] Speaker C: Until the next time we gather around the campfire, keep living beyond cancer.
Thank you for listening to this episode of Campfires of Hope. Living beyond cancer. For more information about Epic Experience and our programs, or to donate, please visit our
[email protected] Music for this podcast is provided by Moonshiner Collective. If you enjoyed this episode, please rate and review us so we can share our story with more people. Also, be sure to subscribe wherever you get podcasts so you'll know when new episodes are released. We hope you come back and join us for our next episode.
[00:17:12] Speaker A: America's Fine.
[00:17:19] Speaker C: Woes. We will rise once again.
