Tigerlily Foundation and Empowering Patients Through the Power of One With Maimah Karmo
In 2006, after being diagnosed with breast cancer at the age of 32, Maimah Karmo decided to dedicate herself to empowering women with breast cancer to serve as advocates for themselves, resulting in the creation of Tigerlily Foundation. In this interview, Ms. Karmo shares more of her story and her passion for amplifying the patient's voice, increasing awareness of and access to screening, ending disparities for underserved communities, and emboldening nurses to champion breast cancer care for their patients, including highlights of her keynote address at the 2023 Oncology Nursing Society (ONS) Congress.
Oncology Data Advisor: Welcome to Oncology Data Advisor. I'm Keira Smith, and today I'm joined by Maimah Karmo, President and CEO of Tigerlily Foundation. Maimah, thank you so much for coming on today. I'm looking forward to learning more about your story and about Tigerlily.
Maimah Karmo: So, Tigerlily was founded when I was in treatment. I was diagnosed with breast cancer at 32 years old. I found a lump in my breast at 31 and was told it wasn't breast cancer, and to come back in my forties. Thank God I had a great provider, and she helped me advocate for getting mammography. Insurance wouldn't cover it, but I kept pushing, and she helped me finally get it.
Then it came back clean. They were like, "Well, you should be happy." I said, "I'm not happy because I can feel what's in my breast, but you can't see it. Your technology must be wrong." And the radiologist laughed at me. I said, "Well, you can laugh all you want, but it's not your body. And whatever choice I make could save my life or end my life."
The lump kept growing over time, so I began to push for a biopsy. For over six months, I was denied a biopsy. I finally I got it, and it was triple-negative breast cancer (TNBC). There's no treatment targeting TNBC in an early-stage setting – not then and not now, 17 years later—so they threw whatever they had at me and said, "We'll help you just live your best life and go out there." As a young woman that was extremely terrifying. It was overwhelming psychologically, physically, mentally, and spiritually. I had a young child who was three years old, and I had to raise her while navigating cancer care. There was nobody who looked like me, age-wise, color-wise, single parenting.
Imagine you are on a plane to a beautiful location called life. The world's your oyster, and you're thinking you're going to get to this place, maybe it's Paris, or let's say it's Bali. You're all packed up and you're doing all the right things. And you land someplace where there are bombs going off and people torpedoing stuff at you, and you can't speak the language and you don't understand anything and you're facing a death sentence potentially. There's nobody telling you how to navigate this journey. That's what I was facing.
Then when treatment ended, no one said, "You had treatment, but now here's how we integrate you into general care." It was more like, "You're done. Go see your primary care provider (PCP)," who doesn't treat you like a cancer patient and you're at risk. I was at very high risk being I was young and Black and triple-negative. I was depressed, I was scared, and I was overwhelmed. For me, there were a lot of things that were wrong. There should not be the fact that women who are younger aren't taught about the importance of breast exams, because if you can't get mammography until you're in your forties and you don't do your own breast exam, you could die. And many women have died.
At the time, a lot of other groups were totally against me telling women who were younger to do breast exams. But if they couldn't get a screening per the "guidelines," then what could they do? Additionally, there was nobody telling moms about the importance of talking with their daughters about their bodies. Then when you went to a doctor when you had a problem, they would blow you off because you were under the age of 45. And mammography wasn't working. Now there's more—there are ultrasounds and other things. People are aware of dense breasts, but at the time I had all those things happen to me, there was no support for that. By the way, the body of people that make up the guideline committees, particularly the United States Preventative Task Force, are mostly White and older. No patients who are of diverse backgrounds serve on their committee, so how is it equitable in that they can create guidelines for us, without us?
So, I had to figure out, how do I educate young girls, educate moms, and tell doctors they're going to be wrong sometimes? Doctors were never wrong back in those days—never wrong. I was chastised many times when I would say that in the past, but I would push back.How do I get better screening for women who have denser breasts like me, and why aren't there treatments targeting my kind of cancer?
I kind of lay in bed, thinking that if I have a limited time to be here, what can I tackle that could be a transformative way to change these systems? Everyone told me, "You can't save the world. You can't boil the ocean. You don't have any money. You're a single mom. You don't know how to run a nonprofit." But you know what I had? I had a passion that I knew I couldn't live without doing the right thing, which was to start someplace and do something. I also had a vision and a will. I knew that it was already done.
That's when I first created our Advocate Now to Grow, Empower, and Lead (ANGEL) Advocacy training program. I began to go out to schools on my time off work and during evenings or lunches and train young women on how to understand their breast health. I went to health fairs and hospital centers and churches. There were so many people coming to me and saying, "I wish I knew you a year ago. My daughter just died. She had breast cancer and was dismissed for years and she was 25." Or, "She was 18." Or, "I'm metastatic now—I wish I knew to do what you were talking about early. I wish I'd done what you did." There were doctors who were saying, "Oh my God, yeah, I could be wrong." But they couldn't say that out loud, right? Then there was this screening piece where women didn't know how to advocate for themselves.
So, ANGEL program was launched, and it's a program that's evolved into a national program that's going global now as well. It really is about educating women to be their best advocates, know their body, know their health, know how to speak truth to what we call power, and know how to say, "I'm not going to accept this as an answer. I'm going to either fire you and find somebody else, or you're going to do what I tell you to do, right? Because you work for me." We help train women on different topics, but they're now also equipped to get involved as advisors in clinical trials. They're ready to be involved in policy and science and research. They're going out in the community and building out these huge frameworks for community engagement, because they live in the communities and they're trusted and they are primed to be leaders where they live, work, play, and pray.
The program's growing exponentially. One of the things we did was establish and ANGEL LEAD Program that is embedded in the community. We established the program piloting leads in 5 cities. These patients were able to reach millions of people digitally and hundreds of patients and community partners. Our ANGEL Program has grown nationwide and now is growing globally.
As I realized how much of a gap there still was–17 years past my diagnosis—I knew that I had to dream bigger and be relentless when it came to putting in place goals that were tactical and measurable.And it was urgent.People said, "you can't do everything at one time." I didn't care – people were dying. I had to stop that from happening as much as possible. That's all I care about. I just put it out there and people said, "How are you going to do all this stuff?" And I just said, "Watch me." And it's done.
For example, we thought, who's paying their bills when they're in treatment? So we established a financial assistance program. Even though they're in an oncology center and they have a warm blanket and they have somebody there, an oncology nurse, they're using a blanket that's been washed before and somebody else has used it maybe, or they're not getting a warm touch. We created these Hope Box Programs, with blankets, scarves, a journal and educational resources.
We kept hearing about barriers that existed, so we created our Barrier Toolkits that are now distributed nationally. We then thought, how do we make these barrier toolkits actionable, to support patients in overcoming barriers? Working with patients, we created RAISE, a platform that provides direct support to help patients take care of logistical and financial needs so they are more likely to adhere to treatment and clinical trials.
We are laser-focused on helping women to navigate the journey with knowledge and power, but also to tell them, "You're capable of doing great things despite what's happening to you now and what could happen to you." No one's getting out of here alive, but how do you get out of here doing epic things? So, that's what we did. We built out an awesome infrastructure of giving people a safe space to come to where they can exhale, where they feel safe, and where they feel trusted and heard.
We are laser-focused on helping women to navigate the journey with knowledge and power, but also to tell them, "You're capable of doing great things despite what's happening to you now and what could happen to you." No one's getting out of here alive, but how do you get out of here doing epic things? So, that's what we did.
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We designed with the patient in mind. Being that I was a patient, everything we do is designed by the patient, from our BREATHE TV show to our MY LIFE magazine that's now distributed in centers across the country, oncology centers that are small community centers, larger health care centers/systems, and they're also going to patients. They're going to underrepresented communities as well, to really provide people with the patients' voice, focusing on Black, indigenous, and people of color (BIPOC) patients as a demographic.
Also, because we train the patients in our ANGEL Advocate curriculum, they're now knowledgeable on science and research. They're talking with sponsors in clinical trials about how to design equitable clinical trials and what they should be doing the right way. They are getting involved in policy that's changing how we approach patients and provide equitable care and treatments for TNBC. They're lobbying, and they're out there writing articles and blogs and speaking. This year, we literally recruited 350-plus advocates who are all over the country now doing something epic. That's the power of what we do.
I see a lot of people say, "We can't find Black patients, we can't reach Black women." That's ridiculous.
We tell people, "Stop saying that, because this is not true. The truth is that they're not important enough for you to invest time in finding them. If you can't find them, I have them, come to me. No more excuses." While Black women are primarily our focus right now, our whole goal is to focus on inequities for all people who are getting unjustly treated in the health care system.
When I was first diagnosed, we focused on the immediate disparity I saw—women and girls who were young, who were in their teens, twenties, and thirties—who were not getting access to screening, proper care, proper treatment, psychosocial support and all that. We were able to transform that landscape advocating for recognizing and advocating for policy change, like the Breast Cancer EARLY Act,Once that legislation was passed, and the work was being done, we moved onto working on the PALS Legislation—focusing on lowering the screening age.And then we're onto the next disparity. I'm always looking towards what is next that we could tackle that would make a powerful and life-changing impact for patients.
We saw that women who are metastatic were being ignored because they were the elephant in the room. Nobody wants to see a patient who's dying on a billboard or national TV; they want to see women who are survivors, who are their feel-good stories. I think that's ridiculous too. Those women didn't choose to be metastatic. They may have been dismissed, denied, or ignored and gotten delayed in treatment just like I was. The only difference is I persisted and then I got diagnosed early.
We began to campaign to get more money for metastatic breast cancer (MBC) research, but we challenged our sponsors and said, "Can we do a campaign on national TV for Breast Cancer Awareness Month (BCAM)? So don't do just women who look like me who are healthy and fine, but get my sisters who are metastatic on national TV." We partnered with a sponsor to support a campaign with Good Morning America that launched during BCAM. It was so powerful. It was all about MBC. I think I was one of the only patients, if not the only one who was not metastatic. People say, "Why do you care so much?" I say, "Because that could be me, and those are my sisters. I have to care. That could be you too." That really transformed how people valued and recognized and listened to Black and Brown patients.
I tell patients that cancer, while challenging is an opportunity to learn how to adapt your mind to a mentality that's pushing you towards manifesting your soul purpose, not thinking that you're just a cancer patient. Cancer taught me what I was capable of doing. I did not know that all of this was inside of me before my diagnosis. We all have a unique gift that we bring into the world, and no circumstance can stop you when you focus on letting it propel you to use that gift to make a difference instead.
Oncology Data Advisor:Thank you so much for sharing your story. I know there are so many gaps in care for breast cancer, and these are some really incredible ways to address those and really prioritize the patients and put them first. So thank you again for telling me all of it.
Ms. Karmo: You're welcome.
Oncology Data Advisor: Going back a little bit to your keynote address from ONS Congress, since a lot of our audience is nurses, what are some ways that nurses can tap into their potential to promote change and improve their patients' wellbeing, as well as their own wellbeing, using the power of one?
Ms. Karmo: I believe that each person has the power to transform the world one thing at a time. Nurses touch patients every day, whether they're patients who have cancer or not. Can you imagine if every single nurse who touched a patient taught them about the importance of perhaps being an ANGEL Advocate and knowing their power? That could change that patient's outcome because they now can empower themselves and their families and their friends—even before they have a disease. If every nurse knew their power when they reach the patients and get them educated, those patients could now be involved in creating better treatments or being able to change health care policy or being able to advocate within their community as well.
We also have a ton of toolkits, like our BARRIER Toolkits. We have our MY LIFE Magazine. We have so many robust tools that we can engage with nurses on to get them out to patients. But also, I want to see nurses become Tigerlily ambassadors or ANGEL Advocates, to be that ambassador in the community. If they were more involved in an organization like ours, they could then take what we are building and be able to own it—because it's not for us to own—and be able to recruit advocates on their own. The nurses could be ambassadors, or they could be helping us to touch each patient who's in treatment or before treatment to empower them to be their best advocates.
Oftentimes in health care, when you have a problem—an earache, a backache, your chest hurts, whatever—you come for the problem, and they give you your prescription and tell you what to do and you go home, and that's it. There's no in-between care. There's no training on what you could do between now and then to better treat yourself in a way that could make you feel better. We have a focus that really bothers me on treating chronic or terminal care and not on risk reduction. The focus is on treating sick people versus helping well people not get sick. This has to be changed. When a patient goes in and they're not feeling well, the doctors say, "Well, what's wrong?" They look at your ears, your eyes, they do all those things, check your heart and pulse. "Well, you seem fine to me." They don't always look for the root of the problem.
When a patient's empowered, the nurse is an empowered ally for her patient. She can help them to go beyond that, because most doctors have a 15-minute window or so to see you. They come in, and they're looking at their chart—"What's your name? What's your birthday? Okay. What's your..." And then they just say, "Okay, here's what my nurse said. Tell me what's wrong." That's a two-minute conversation. Then they write it down in the system and say, "Well, okay, here's what we can give you medication-wise," or do the screening and then they're gone. There's no interaction. There's no knowing what your background is, your personal situation, what impacts your life. Even if you were to be asked to come back for a follow-up screening, "Do you live far away? Do you have insurance? Do you have childcare? Is your job one that you can leave to come back?"
If you can empower nurses, they can be the best allies with their patients to help create adherence, understanding, empowerment, and trust, and to save people's lives. I'm still friends with my oncology nurse. We're on Instagram together, Facebook, and TikTok. And my surgeon came to my birthday party two months ago. I'm really a fan of keeping my health care team close.
My doctor who's my primary care physician right now, when I first met him after treatment, he was telling me that I was hypervigilant—"The cancer is gone, you're fine." I said, "Look. Listen. You need to stop. Put that iPad thing down and look at my face. If I was your daughter, how would you talk to me? Is that how you would talk to me and treat me? So you're going to stop, you're going to call the nurse back in here, you're going to give me your full attention. You're not going to rush me. I'm paying you, but you also took an oath to protect me, protect my life. That's the oath you took as a doctor. So you have to give me your time and attention."
Over the past 17 years, when I call him or I email, he gets me in; he doesn't blow me off. He takes me seriously.But I had to train him, and he was open. There are things that I found myself that weren't going right with me that he had ignored, but they were chronic issues that popped up due to my cancer treatment. Now, he doesn't dismiss, ignore, or delay patients getting treatment access or follow-up care. He's a different doctor. This can apply to nurses too, or they can help their doctors be more intentional when treating a patient.
Oncology Data Advisor: Thank you. That's definitely a really important message, and it's incredibly inspiring to hear about what one person can do through the power of one.
Oncology Data Advisor: Well, I don't give up. I'm relentless.
About Ms. Karmo
Maimah Karmo began pioneering breast cancer advocacy after being diagnosed with stage 2 breast cancer at 32 years old in 2006. After undergoing treatment, she founded Tigerlily Foundation, a nonprofit organization that provides breast health, wellness, and empowerment programs to young women and works to end age, stage, and color disparities in breast cancer care. In 2011, Ms. Karmo was appointed to the Federal Advisory Committee on Breast Cancer in Young Women through the Affordable Care Act, which develops initiatives to improve breast health and breast cancer knowledge for younger, at-risk women. In 2015, after Tigerlily Foundation advocated with members of Congress to increase access to breast screening, House and Senate support for the Protecting Access to Lifesaving Screening (PALS) legislation was doubled, and the bill was signed into law. Ms. Karmo has partnered with the Centers for Disease Control (CDC) and the Office of Women's Health, and she has appeared on Good Morning America, the Today Show, the Oprah Winfrey Show, FOX, ABC, CBS, and in numerous magazines and other media outlets. Under her leadership, Tigerlily Foundation has launched a myriad of initiatives working to end health care disparities nationally and globally.
For More Information
Tigerlily Foundation (2023). Available at: https://www.tigerlilyfoundation.org/
Tigerlily Foundation (2023). ANGEL Advocacy Program: Available at: https://www.tigerlilyfoundation.org/programs/angel/
Tigerlily Foundation (2023). BREATHE TV. Available at: https://www.tigerlilyfoundation.org/programs/breathetv/
Tigerlily Foundation (2023). MY LIFE Matters magazine. Available at: https://www.tigerlilyfoundation.org/programs/my-life-program/
Karmo M (2023). Opening ceremony and keynote address: the power of one. Presented at: 48th Annual Oncology Nurse Society Congress. Available at: https://ons.confex.com/ons/2023/meetingapp.cgi/Session/5078
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.