Episode 1: Promoting Breast Health Equity
With guest Laura Crandon, Founder and President of Touch4Life
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Transcript:
[00:00]
LC: “So really to take what some would call a tragedy given my metastatic condition and take that and turn it into a triumph so other people can learn from what I’ve been through.”
LW: Hello, I'm Dr. Lauren Weinand, and welcome to the MD Newsline podcast. If you're a health equity-minded health care provider or health advocate, you've come to the right place. MD Newsline is a health equity-focused educational platform. Our mission is to improve patient outcomes for vulnerable and underserved populations by connecting health care providers and health advocates with relevant medical research and resources that empower, enlighten, and engage.
Today we are featuring Laura Crandon, a former health care executive, two-time breast cancer survivor and thriver, strategist, innovator, keynote speaker, entrepreneur, and the founder and president of Touch4Life.
Touch4Life is a nonprofit organization dedicated to promoting breast health equity. Its mission is rooted in Laura's experiences as a Black breast cancer survivor, driving the organization to educate, engage, and empower individuals within the community to actively prioritize and embrace lifelong breast health.
Through its programs and initiatives, Touch4Life strives to bridge the gaps in breast health awareness, screenings, and support services for marginalized communities to provide every person, regardless of their background or circumstances, with equitable access to quality breast health resources and care.
With a focus on education, Touch4Life aims to empower women of color with accurate information, dispelling myths and misconceptions surrounding breast health, and providing essential knowledge about breast health awareness, breast cancer risk factors, genetic and molecular testing, and the importance of regular breast cancer screenings to provide for proactive and informed decision-making.
In these ways, Touch4Life works to empower women of color with the tools, resources, and support they need to navigate their breast health journeys confidently, take ownership of their health, seek appropriate screenings, and engage in self-care practices.
In hearing Laura's story, we’ll get some insight into her patient journey, what motivated her to develop Touch4Life, and how we can work together as healthcare providers, clinical researchers, patients, caregivers, and health advocates to promote breast health equity. It is my pleasure and honor to welcome Laura Crandon to the podcast. Hi, Laura, how are you?
LC: I'm so great. Thanks for having me.
LW: Thank you so much for joining us, Laura.
I'd like to start with your story. Can you share with us a bit about your breast cancer journey—from screening to diagnosis and treatment?
LC: Sure. So that really started in 2016 when I had what I thought was an all-clear mammogram. It said, “dense breasts,” and I thought, “cool.” But I didn't know then, and I know now that means the radiologist can't see. And although I should have had additional screening—MRI or ultrasound—I didn't get that. But that's the case for about 50% of women of color.
But fortunately, I did self-exams. And so, I found something unusual on one side that wasn't on the other. And it turned out to be breast cancer and pretty aggressive. So, I had all the things. I had chemo—my hair fell out, of course—radiation, surgery, and then because I had this molecular testing called biomarker testing—which told the doctors which mutations were really driving my cancer—I had personalized medicine for that.
And then, about a year later, at my brother-in-law's 50th birthday party, I had a Cîroc and cranberry. And although my professional drinking cousins prescribed a lot of remedies for this headache that I thought was a hangover, it just wouldn't clear. And it turned out that the cancer had spread to my brain.
And so, I've had three brain surgeries. I've participated in a clinical trial. I’ve had the benefit of biomarker and genetic testing to know which mutations were driving my cancer. And then, because I'm metastatic, I'm on some kind of medication for the rest of my life. So basically, I go for treatment every three weeks, and then I go for scans every three months.
Of the three brain surgeries that I've had, the latest one I had was in March of this year. But this time, they didn't have to crack my skull all the way open. It was in-and-out surgery, but brain surgery, nonetheless. But that's my journey with breast cancer and metastatic breast cancer.
LW: Thank you so much for sharing, Laura. And I know, you were mentioning that your experience wasn't what it should have been, especially at the start. And we just wanted to comment on how guidelines are evolving, and they aren't one size fits all. And breast cancer risk assessment and screening guidelines are evolving too to support a more personalized, risk-based approach based on new and more inclusive research.
Now, how did your patient journey inspire you to create Touch4Life?
LC: Yeah, you know, the more I went through my experience, the more I discovered the disparities that exist for Black women.
So, we die at a 41% higher rate from breast cancer than our White sisters. We get triple-negative breast cancer, which is pretty aggressive, at two to three times the rate, and then die at two to three times the rate versus our White sisters under the age of 35.
You mentioned the guidelines. And the guidelines exist, but they're not always followed for us, unfortunately, or even made for us. And that brings me to another disparity, which is that we're not in the clinical trials. And we're not in the biodata. So, we only represent about 3% of the clinical trials. So, when the drugs come out, they don't necessarily work on us, but upstream because our tissue isn’t tested, we're not in the biodata.
So, when the researchers and the scientists are looking for what's driving cancer, and in particular, the cancers that are killing us, we're not even in the equation. So, the therapies that are targeted and developed, really don't have us in mind.
And so that, coupled with my own experience, made me want to do something about it. I was really compelled to not keep my experience of being a unicorn—having had the biomarker testing, having gone through the clinical trial—I realized I'm this unicorn, and so I had to do something about it.
And that's why I started Touch4Life, to go out to the community and educate the community about the health care that they deserve, the risk that they face, and the screening guidelines that are more specific to them as being high risk. And then also to go out to the provider community and challenge them, put a face to the disparity. And lastly, to work with policymakers to make sure that policies are fair and equitable for the community.
So really, to take what some would call a tragedy given my metastatic condition and take that and turn it into a triumph so other people can learn from what I've been through.
LW: Wonderful. Yes, so, so important, Laura.
And we know when it comes to promoting breast health equity, we can all make a difference. How does Touch4Life help support patients, caregivers, and health advocates in their fight for breast health equity?
LC: Well, it first starts with educating the community about the treatment that they deserve. I mentioned the guidelines, so making sure that the Black and Brown communities understand the guidelines as it pertains to them.
For example, the American College of Radiology declared just being a Black woman means you’re high risk. Or the recent guidelines that came out on screening that lowered the age from 50 to 40. But that's if you’re average risk. Below the headline, it says, “Oh, wait, but for Black women, you're high risk. So, you should have a risk assessment at 30.” And so, amplifying that which looks like a footnote to us, but amplifying that in our community.
So that's where it starts. And we provide tools in order for the community to document their family health history, which is really important in understanding your risk factors, and when you should be screened. We provide tools, like what to ask your doctor about the different tests, whether that's genetic testing, or the molecular testing, biomarker testing. We provide guidelines on how to contact a genetic counselor, and we go out into the community, really, to educate folks.
We also have one program that's a direct service program called B-FRESH, where we educate the community about nutrition, and the role that nutrition plays in a breast cancer journey from whether that's the immune system or boosting energy. And we train people on how to be advocates with their legislators. So those are the things that we do in the community to help support [breast health equity].
Lastly, we have a program that airs every fourth Saturday called S.O.S. And it's not rescue, but it's called Soul-filling Our Sisters, where we bring experts to the table to talk about topics that are important, specifically around Black Genes Matter. We bring experts to the table to talk about topics that are relevant to the community. And we have people with lived experience for about an hour, and it airs on Facebook and YouTube to cover these topics.
And so those are the ways that we really support the community to make sure that they have the fair and equitable treatment and quality of life that they deserve.
LW: So wonderful to hear. We’re so, so glad you're doing the work that you're doing, Laura.
And how might health care providers and clinical researchers partner with Touch4Life to help promote breast health equity?
LC: That's a great question, because what the data show is that it's not really social determinants of health that's the main barrier for driving these gaps in care and these disparities. It's that your doctor’s not ordering the tests or offering you the clinical trial.
And so, one of the things that we do is go around to academic symposia and conferences where the doctors are and put a face to the disparity and talk about what they can do differently. And so, one of the ways that doctors could partner with Touch4Life is invite us out if you've got a conference.
You know, we spoke at the brain metastasis colloquia at Duke University this year. We spoke at the women's malignancy center at NIH. We spoke at Johns Hopkins. We spoke at two medical schools, as an example. Invite us out. Let us put a face to the disparity and talk about the implications of treatment disparities. And then we also have some ideas on how you could really—as physicians, researchers, and research sponsors—close the gap that we see in equity.
So that's another way that we could partner together.
LW: Fantastic. We're so glad to have you share all of that wonderful information, and we really hope it will become more of a reality that health care providers and clinical researchers will take advantage of.
Finally, is there anything else you'd like to share with our listeners before we sign off?
LC: Yes, thank you. You know, we really want to make sure that the listeners know about this movement that we started. It just launched, but it's going around the country. It's called Black Genes Matter. And we launched it with Party With a Purpose—wear your black jeans to learn about your Black genes.
But most importantly, it's a movement to make sure that our community is educated on the importance of understanding genetics and genomics. These are two different terms. And they mean two different things. But knowing your family health history, knowing your risk for cancer, and then if you've been diagnosed, really getting these tests that can help guide your treatment, because precision oncology is the way of the future and we don't want them to be left out.
Finally, if any of this resonates with you, and you feel compelled to support Touch4Life, please join our community. Or certainly we would accept your financial support to help make sure that the programming that we just talked about is sustained, and our impact gets amplified.
LW: Absolutely. Thanks so much, Laura, for coming on the podcast and sharing with us your breast cancer story and empowering work with Touch4Life to promote breast health equity.
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