The Patient Perspective: How to Create Real Investment in Diversifying Research Participation
Maimah Karmo discusses how her journey with breast cancer led to becoming the founder and CEO of the Tigerlily Foundation, to educate, empower, advocate for and support young women affected by breast cancer.
When in your own treatment journey did you found the Tigerlily Foundation?
After my second treatment, I was struggling. I couldn’t foresee this being my life for a long time. And being that I had triple-negative breast cancer, for which there was no treatment, I didn’t know if the treatments would work.
So I got into bed one night and I prayed to God. I said, “If you can help restore me in a way that I can make a difference for other women, I’ll do that.” That was Tigerlily. I didn’t know what it would be yet. It was just this thing in my gut; I knew that I couldn’t go back to my life as it was before. That there would be other women talking about their breast health, that there would be other women finding lumps or discharged, going to see their doctor and being told they were too young to have breast cancer. That there would be women getting mammograms that would be wrong and that they would believe. There were things that I knew I couldn’t live with if I didn’t work to change and speak about.
When your first physician dismissed the possibility of breast cancer, was your reaction to get a second opinion?
My first reaction was, “This is off.” I had been taught to know my body and be my own advocate, do all the right things, like breast examinations, and if I found a problem, to go see my OB/GYN, and ask for a mammogram. I was doing the things that I was supposed to do. This doctor, who was supposedly one of the best in the state, was telling me that I was wrong, that I was wasting her time, that I was hypersensitive, and to come back in six months to a year, or better, in ten years. Back 10, 15 years ago, the standard was that women were screened between 40 and 50; it was not 30 years old.
I said to her, “I know my body, and something is wrong.” You cannot assume because of the standard that something’s not wrong with me. If the lump is not aspirating, something is in there that’s not a cyst. It was a concern, and I refused to take no for an answer.
"We’re helping to change the narrative around clinical trials, building trust in communities, bringing patients to trials earlier and consistently."
Was participating in a clinical trial ever brought up by your healthcare provider?
I had surgery – lumpectomy – and then I had chemotherapy, but I was never talked to about clinical trials. I say this because I had triple-negative breast cancer. TNBC, until a few months ago, had no treatment. The treatment that has been created is for people who are metastatic TNBC patients. It would’ve behooved me to know that there were clinical trials for triple-negative breast cancer, even as an early stager, but no one ever mentioned clinical trials to me.
I began to ask questions. I would go on Google and see something about a conference, and I would fly there. And people would say, “I saw you at the last one,” and the one before that. I would learn. I thought it was fascinating, but also devastating, because people don’t know what exists. Why would you not offer a TNBC patient, even though she’s early stage, a clinical trial to see if she wants to get involved? She could be a part of developing a trial for early stagers to not become metastatic TNBC patients. There are things that I could’ve been involved in that could have made a difference for myself or others. Thank God that I’m fine 14 years later, but some people don’t have the same outcome as I did.
Does Tigerlily ever promote clinical trials?
Organizations evolve. My organization began with me as an early stager, and what I faced in terms of disparities. Then I began seeing a lot of my friends have recurrences. We were taught early on that if you find the cancer early, then you’ll be fine. That’s not true. If you find it early, it’s a good thing but you have to stay vigilant, keep getting screened, watch your lifestyle. So we began to veer into MBC and help people who are metastatic. We began looking into how some patients were living longer. What helped change those outcomes? It was the trials that they were on, that could help prolong their lives – three months, six months, a year, five years. And so we evolved to look at trials.
Then I discovered that Black women had 40% higher death rates than their white counterparts, and we’re facing multiple barriers to care. Now we’re heavily focused on clinical trial engagement, and really working with communities that are underserved to figure out how to get them to understand trials. With the medical mistrust, many people of color – and Black people in particular – don’t trust the healthcare system, scientists, researchers and definitely not clinical trials.
Part of my vision is to make trials less clinical. There’s a saying in our community, “Use what was meant for your harm, for good.” In the past, trials were used for Black people’s harm, but not any longer. People are working to save lives. We’re helping to change the narrative around clinical trials, building trust in communities, bringing patients to trials earlier and consistently.
"I always encourage pharma: if you want to create a solution for me, create it with me, walking beside me. Don’t make me a meal that you think I should be eating."
You touched upon the notion of bias turning into barriers for diverse participation in trials. Can you expand on that?
I was thinking about how disparities start. A person has a bias, and the bias leads to separation – exclusionary behavior – that becomes part of your system. It’s the entire system that creates barriers, and the barriers create disparities, and the disparities create death. Through our inclusion pledge, the whole goal is to back from disparities through these healthcare systems to the bias that started it, and working with organizations that have systemic biases that they might not even know about.
What conversations would you encourage systems to have to confront their biases and enact that meaningful change?
We all have biases, whether they’re for good or bad. The key is to examine our biases, and how those biases can create separation or exclusion, and how that can create systems that exclude people of color and create disparities.
It’s being vulnerable. It’s saying, “Here is what I was taught to believe, and maybe I could be wrong. And if I am wrong, that could impact someone’s life.” Versus feeling a sense of “I can’t be racist,” or “I can’t be biased.” Think about how to use your privilege for power. If there are barriers, work to eliminate them. It’s really looking out of your comfort zone. I always encourage pharma: if you want to create a solution for me, create it with me, walking beside me. Don’t make me a meal that you think I should be eating.
Where do you see Tigerlily evolving towards?
I want to be at the forefront of the next best thing for patients, not where it’s popular. I want to make sure that we keep this conversation about disparities at the forefront. I want to hold people accountable. Working by yourself in a silo is not ending the barriers. Collaborate with the Black patient population and Black advocates and leaders. I want to see that the work you’re doing is working to end barriers. Just saying that you have a health equity initiative or you’re hiring a D&I person, or you’re focusing on disparities, means zero to me. What matters to me is how what you’re doing is ending barriers for people that have these high death rates.
Is there anything you’d like to end with as a call to action?
I want to see true investment with the patient population. That means being on the ground, in those communities, working with them. I think people will often say, “Here’s an advocate that could speak on your panel,” and they’ll want somebody who’s more polished, articulate, presentable. That’s part of the bias: wanting somebody who will fit in, look like you, talk like you, right? It’s not our job to switch our behavior or culture to fit into your paradigm because you think it’s not intelligent or that we don’t understand. But by denying us that right to use our voices in the way that’s true for us, it harms those who are not being heard in communities that are facing the worst disparities. That’s part of the bias that we have to face.
We have to talk to those people; we have to engage with them; we have to speak their language. We have to hear what their problems are and then co-create solutions. These are hard conversations, but they have to be had, because at the end of the day, they save lives.
