Published on June 8, 2020
- Women of color who are diagnosed with breast cancer face racial disparities; the coronavirus pandemic is amplifying these issues.
- Barriers to clinical trials include distrust of the healthcare community, lack of childcare and financial resources, and the inability to travel to a trial or take time off work to participate.
- The Tigerlily Foundation educates, advocates for, empowers and supports young women, before, during and after breast cancer.
“If you don't discuss things openly and honestly, and share their pain, and share your hopes, and dreams, and goals, you won't build a bridge,” says Maimah Karmo. As Founder and CEO of the Tigerlily Foundation, she explains the importance of collaboration when addressing racial disparities in healthcare.
Maimah, who was diagnosed with breast cancer at age 32, recently sat down with Patient Power’s Andrea Hutton. They discuss the impact of the coronavirus pandemic, barriers to clinical trials, unique challenges women of color face and what the Tigerlily Foundation is doing to help. Watch now to learn more.
This is the first of two parts. Watch or read the second part here.
[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]
Transcript | Disparities in Breast Cancer Care for Women of Color
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Recorded on May 1, 2020
Hello, I'm Andrea Hutton with Patient Power. Thank you so much for joining me today. I'm a breast cancer patient and advocate. I'm very happy to have joining me, Maimah Karmo, who is the founder of the Tigerlily Foundation. We're very happy to have Maimah here today to talk to us about women of color and disparities in breast cancer.
Thanks for having me. Happy to be here and to share as much as possible.
Right. Can you talk about your foundation and what you're doing right now to help women of color in dealing with their diagnoses as well as their specific issues happening right now because of the COVID situation?
Well, first I'll say, women of color have been facing disparities for many years. Women of color, we have a 40 percent higher death rate from breast cancer than our Caucasian counterparts. When you're facing disparities that are already unaddressed or not resolved, as you go into COVID those things are amplified. What we've been working on is to provide women of color with access to programs, with access to trials, to helping them to break down barriers around clinical trials, things that are already problematic right now accentuated. One of the things I've told my team, and we all committed to doing, is that our work around women of color is not going to stop. We have to be laser-focused on our mission.
We're still focusing on our mission, which we discussed at San Antonio, I believe, or at the Alliance meeting. We have a cohort of women from 20 cities that have the highest death rate from breast cancer for black women in the country. That cohort is actively being trained. They're being engaged with social media. We're having training on understanding clinical trials, understanding MBC (metastatic breast cancer), and that work is still going on. We're actually planning our ASCO events that will be online in June as well, so we're still mission-focused. However, people are facing some really, really harsh challenges right now. Whereas the mission is still going on, we are pivoting in many ways to meet these new needs.
What kind of advice do you give people who don't have access to you necessarily? What are the unique challenges that women of color are facing? You mentioned if you don't have a phone with video, or you don't have access to a computer, what other things can people do for outreach to get connected with other resources in their community? How can they get best access to care right now? What are some of the suggestions that you have?
Well, some things we don't have answers for yet. I spent my entire day, that's probably why I'm getting a little bit hoarse, I'm on the phone constantly, because it really pains me that patients are not having access. One thing we want to be able to see doing is how do we get patients phones or iPads, where they could have an iPad shipped to them or pick up one at a store, so locations where they could have access. We want to be able to see if we can get these big companies like Sprint or Verizon, I don't want to call anybody out, but they're providers that have money, a lot of money. Why can't they give people hotspots in certain areas? Some people are doing that, so putting a hotspot in a school where you can just drive by and have access to wifi, free wifi, or putting it on a bus, or putting it in a church.
I'm literally calling people out and saying, "You all have money. People are dying that don't have access to screenings, don't have access to clinical trials.” The new trials are delayed by the way. People that could get the treatments that would be resulting from trials will not be getting those treatments. It's hurting patients now, and it will hurt people who could have those drugs in the future. We're really working to ensure that—we are talking to people who are leaders in the community and saying, "What can you do to help to change some things systemically now to give patients immediate access to triage these problems?" I don't know all the answers, but we're working on it every day, all day.
Yeah. I mean, you talk about clinical trials, I know from my work with the Metastatic Breast Cancer Alliance, how difficult it is to enroll women of color in clinical trials. Can you talk to me a little bit about what those barriers are, in general, not just right now, but what can we do? What are those barriers? How can we break them down?
Well, there are many barriers. I think people think that people of color should sometimes forget that there are racial issues, but those things happened in the past and they're still happening. I live in a very affluent community, and I have been stopped by the police for being out late or driving too slow. People who have been abused for many years, not just systemically, but even in the healthcare system, people have been given trial drugs without being asked to be a part of a trial. They've been experimented on in ways that are, to be honest, inhumane. Those are some issues that we're having around people of color enrolling in trials.
Also, sometimes, I think people of color don't see—they don't trust the physician. There's a mistrust around the healthcare community. There's mistrust because of the historical issues around race. There's dishonesty around people being experimented on in the past or around trials. Then when you look at the media, I mean, I watch many ads, and they're talking about clinical trials, and there's some woman who is older, white, doing it in a yoga outfit, getting a latte or running, and that is not how a patient looks that is facing a challenge and needing a trial. The people that I work with, that I know and love, they are not happy. They're being positive, but they are needing to get into trials. When you see an ad that doesn't look like you or talk to you in your voice or your demographic, you think it doesn't really matter, and that's the problem.
There's also a lack of—people are living in rural areas where they have to get on a bus to go on a trial and leave their job for maybe a period of time. If you're facing disparities, or you have multiple jobs, or getting paid minimum wage, how can you leave your job for a couple of hours? We're looking at ways to get people to bring trials to patients, or pharma, can they do that? That's a discussion we've been having with partners. There's a myriad of issues that I mentioned. Financial access, travel, who's caring for your kids when you're gone? Just many other issues, and so we've been doing a lot of listening. One thing that's important to me as a person who became a patient is to not forget where I came from. We literally go back to our patients for everything we ask. We ask our patients, “What are you feeling? What are your needs?" We've been doing listening summits as well as doing some Twitter chats to ask questions.
The barriers are, again, financial, travel access, mistrust and so forth. There's a very, maybe this is too metaphysical, but people have pain body issues around topics. If you have a deep mistrust of an issue, the chances of you enrolling and trusting that will work for you are tenfold. Again, part of our work has been to bring patients together with scientists like we did at San Antonio. We brought women of color, the largest ever that were brought to San Antonio, to meet with scientists, and clinicians and oncologists to talk about these real issues. I think that if you don't discuss things openly and honestly, and share their pain, and share your hopes, and dreams, and our goals, you won't build a bridge. We're about honesty, building trust, and with trust comes these aha moments of, "Okay, they don't want to kill us. They want to help us. How do we work together and collaborate?"
That's what I spoke to when I first began talking, that our work is not going to stop. As we work to triage the COVID issues, we're still going to go forward with our women of color initiatives, our disparities work around our cohort. Our next major event will be our ASCO online activation in June.
Please explain to our viewers what is ASCO and why is it important for patients, women of color, to understand what is happening? It's a medical conference, so why is it important for us to connect there? What do we bring back from there?
I'll take a step back. San Antonio is the largest gathering of anybody, any of the who's who around breast cancer. ASCO is the largest gathering of physicians around all cancers, and oncologists, and researchers, and doctors and advocates. It's like cancer advocates, and empowerment, and everything alive at one point in time, one place for a week or so. As we talk about disparities, we want to ensure that people of color are at the table. For many years, I go to San Antonio, and I've been to ASCO a few times, and I would keep hearing about disparities, and about getting people of color involved in trials, and getting young women involved enrolled in trials. I look around the table collectively, the table, meaning the entire conference, I'd be in partner dinners, or presentations, or just meeting people, and I don't see maybe but two people that look like me in this room, or maybe 20.
Let me go back, even a few that are young women of color, that are advocates, that are here to talk about what we're going through, and how do we end disparity. How in the heck do you reach people that you want to connect with to enroll them, or just to build a trust, when they have no idea what San Antonio or ASCO is? The problem you're trying to fix is multiplied, because you're not engaging people that you want to reach in this space. I said, "I'm tired of coming to these conferences. You're saying you want to reach black women. You're saying you want to help black women, and you really mean it. People really want to help, but why aren't they at the table?"
With San Antonio, we brought together women of color with partners to begin building the bridges, and talking and so forth. The women that we brought were so overwhelmed. Some women, some black women that came, had not met another patient who was of color, who was metastatic in her entire experience. Some women did not even know they could touch a scientist that would be making the drug that they were on. If you're going to empower a woman, put them at the table and build the relationships that they need to have to continue to go back home and build those bigger community-based relationships.
Maimah, thank you so much for joining us today. I appreciate all of your work that you're doing with your organization. I know that the information that you've provided today will be incredibly helpful, so, Maimah, thank you so much for joining us today.
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