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Video
BETA Why is clinical enrollment low in the black population?
Posted by
HealthTree • August 7, 2024
Transcript
So, in terms of clinical trials for the myeloma population, I think even without thinking about myeloma itself, we first have to kind of take a broader lens and ask who is actually enrolling in clinical trials more generally. And we see that nationally, if you look across all cancer types, that Black patients continue to be underrepresented. They represent only about 7% of those who are enrolled in clinical trials, and that number is pretty similar for myeloma, especially myeloma-related trials. The reason for this, I think, is multifactorial. I really think it begins with, one, not having the knowledge and awareness about when a trial may be appropriate for them. And so, this comes down to education and so whether or not we are in the communities educating African Americans about the role of clinical trials in their care. The other part that it comes down to is thinking about the role that the providers play when thinking about who should be offered a clinical trial. We looked at this earlier at ASH. There is a potential role of discrimination on the part of the providers where they make assumptions about patients that may lead to them not offering patients clinical trials. So, with those two things, I think those really drive why we see this differential ability for Black patients in particular to enroll in trials. There's other factors that we always have to think about, and those include things like trust. And so, a long history of medical mistrust really limits the Black population or the African American community from really trusting the medical research. And so, that may make them less reluctant, more reluctant to actually want to engage in medical research. So, in order for us to really think about strategies to build, bridge this gap, we need to be thinking about strategies on multiple levels. We need not only to be thinking about how we build trust with individuals, but we also need to think about ways in which we make our institutions more trustworthy that patients will feel comfortable coming to us and seeking out trials. We also need to be focusing on increasing education and awareness, especially in the African American community, so that they recognize the value of participating in clinical trials and recognize that their input is truly necessary. Number one was fear of randomization, that they're going to be randomized to a placebo. In myeloma, when there's a randomized trial, it's either the best possible care, best care available versus the best care available plus a bit of icing on the cake. And so, if you're enrolled in a clinical trial that's randomized, you will receive the best possible care. There's no way that will, any other way that will happen. And you might get the other drug, you might, I'm sorry, I meant the other drug, the best possible care plus a little bit extra. Is that little bit extra going to help or is that little bit of help just going to keep things the same? That's the point of the trial, but you'll get the best care no matter what. The other thing that people worry about, they're going to be a guinea pig on a clinical trial. The African Americans worry about the atrocities that happened, you know, decades ago, which is still very prevalent, still very in the minds of researchers, but we've done a lot of work to ensure the safety of the clinical trials, that there are no ones a guinea pig anymore. Guinea pigs are little fuzzy animals, they're super cute, but they're no longer involved in clinical trials, that we take clinical trials very seriously. There's lots and lots of training to participate, to be an investigator in a clinical trial. You have to go through training and training and training and training to be absolutely certain the clinical trials are safe and that no one's a guinea pig. You're receiving the best care on a clinical trial for sure. The other worry is will my family, you know, the community engagement, and so talk to, if you're going to go on a clinical trial, talk to your family. Don't just make that decision by yourself, talk to your family, engage your family, and show them what the clinical trial and get their input. We want to hear that. When I see it, I don't like seeing a patient and talk about clinical trial when they're alone, because I know that's a lot of information. Bringing people around, engaging your family is so important and makes doing the clinical trial so much easier.