How was participating in a clinical trial first brought up to you after you received your diagnosis?
I actually approached my healthcare team. My end goal was to live, and I began doing research on clinical trials. I didn’t have a clue about how they worked, or how they were presented to a patient, but I did my research and I presented it to my healthcare team. They looked at me, stepped out of the room, and came back and said, “That’s not suitable for you, but we do have one for you.”
I was for it; whatever assistance was going to help me live. That was the purpose: living, getting the right kind of care. At the time, they didn’t have literature to hand me about that particular clinical trial to read. I was just open, and because I trusted that team, I was okay with whatever they presented to me.
What did you know about clinical trials before that?
It’s amazing, when you hear “cancer” attached to your name, you begin doing research on what that looks like, what that means. I had an aggressive diagnosis. I was triple-negative, Stage III breast cancer. What does that look like for a person of color? How does that work?
Cancer, cancer, cancer – that’s all you hear. I just wanted to help them to help me.
"I just wanted to help [my healthcare team] to help me."
What would you urge patients who might be receiving a diagnosis like yours to think about as they’re considering their options going forward?
Since becoming a community ambassador for Fox Chase, we’ve put together a pamphlet with these amazing questions to ask when someone approaches you about a clinical trial. The goal is to know things like: “Does anything have to come out of my pocket?” “If I decide I no longer want to participate, can I stop at any time?” “Who is the study for?” “What is the goal for the clinical trial?” “Who is sponsoring the clinical trial?” “Do I have to think about it?” Those are questions you want to know about the clinical trial. Those things are extremely important.
When did you decide to become a community ambassador for Fox Chase?
Evelyn González, who is the director of community outreach at Fox Chase, reached out to me. She received my name from my doctor. I was two days out of chemotherapy. They were looking for an African-American woman who had just gone through a clinical trial to speak or sit on a panel for Susan G Komen’s “Sisters for the Cure” – a group of women of color. At that time, it was about 2,000 in attendance. I was asked to come and sit on a panel with an African-American oncologist. I said yes. That was my initiation into sharing my story and speaking to people of color.
From there, Evelyn decided to do the community outreach program; I was in the first class of that new program.
"I wondered how much more tailored my treatment plan could be if we had a better, more diverse representation of women with breast cancer or the same diagnosis. I knew that I wanted to pay it forward however I could."
You’ve spoken about the need for representative data, particularly when the predictive datasets are not representative of you as an individual. Can you tell us more about that?
When I was getting my hereditary risk assessment done, I heard the statistic that 42% of people of color are dying at an elevated rate than our white counterparts of curable cancer. That hit my heart; I couldn’t understand what that meant. Why were they dying of curable cancer? Then, when I was getting my treatment plans and options, it was based on data on my white counterpart, not a representation of women of color with the same diagnosis. So in my head, I felt my team crossing their fingers and hoping that the same treatment regimen that my white counterpart went through would work for me as a Black woman with the same diagnosis.
I wondered how much more tailored my treatment plan could be if we had a better, more diverse representation of women with breast cancer or the same diagnosis. They can tailor it better with better outcomes. I knew that I wanted to pay it forward however I could. The goal is always to decrease that elevated number; no way in the world should we be dying at 42% higher rates of curable cancer. That’s unacceptable. And so you want to sound the alarm, you want to share your story, you want to jump into the game, you want to do whatever it is you can to help decrease that number.
How do you talk about trials as a community ambassador?
You try to speak in plain language. There is so much fear in the Black community when it comes to clinical trials. You hear the phrase, “I don’t want to be a guinea pig. I don’t want to be used.” You hear about Tuskegee. You have to meet them where they are. You don’t want to talk over their heads; speak in plain language.
Through our training, we begin with talking about things that people use in their everyday lives. Tylenol, Midol, toothpaste – those things were clinical trials at one time. A group of people went through, tested them out, and now it works, and you know it works.
I try to give them that plain language, and then give them the benefit of being in a clinical trial. You’ll get this personalized team that will check on you. They focus on you, and you’re not falling through the cracks. If you’re not on a clinical trial, that’s not to say that you would fall through the cracks, but the team is so accessible to you. They meet you at the door.
At Fox Chase, on my first day of chemotherapy the intern on my team was there before I got there just to greet me. They’re there to sit me down to ask me questions, or to give me a call, “What was chemo like today?” or “How was your treatment?” I had to go back in 48 hours to get a shot to boost my immune system.
It’s just the additional, hands-on care that you receive while being on a clinical trial. If you have any questions or any concerns, they are right there.
Which data points and results from your trial matter to you?
I would want to know the aggregate, and how the majority of the people on the trial did. I would also want to see if that particular treatment had gone to market, and was making a difference in the lives of Black people and people of color – if they’re having better outcomes with a diagnosis. I want to know if it’s helping them throughout the treatment.
I want to know, “Did you reach the outcome you were looking to reach?” “Is it making a difference?” and “Are you able to help the masses?” That’s what I’d like. Not even a thank you. But did it help?
"You understand, you meet [patients] where they are, and you agree with their pain and how they feel. You validate it. You point them to what’s on the books and how that can never happen again, and tell them that they are in total control.”
What can sites and sponsors do to build relationships and diversifying participation in clinical research?
Everything is relational. I get calls and texts and emails monthly on “Can you speak with my cousin? My friend? My family member?” People who have been newly diagnosed. “Can you chat with them? Can you help them? They’re having a rough time.”
They trust me enough to have that conversation with their loved ones, who they are trying to help.
Within the community, you have individuals who already have their finger on the pulse of the community. They know what they’re looking for; they know what they want. Don’t send in someone from a pharmaceutical company trying to reach the community, because guess what? The community is going to think that you have a hidden agenda. But if you take time to develop a relationship with the individuals who are already in the community, and you have them have a chitchat, you’ll have more participation from the community. It’s that relationship piece. It’s all based on relationships.
I had mentored a young woman who was diagnosed two years ago. I had never met her; we did all our chitchatting over the phone. I helped her and gave her some words of encouragement to ask the appropriate questions to help her. Unfortunately the cancer came back, and she invited me to her appointment to get the answers that she was looking for. We met in the doctor’s room for the first time face-to-face. That’s a relationship.
I call them my pink brothers and sisters; I go above and beyond for them, because I know how I felt when I heard the word “cancer” attached to my name. Any sponsors looking for participation, they will be wellserved if they create and develop a relationship with the community leaders or ambassadors, and begin to get into the community that way.
"If you take time to develop a relationship with the individuals who are already in the community, and you have them have a chitchat, you’ll have more participation from the community."
How have you approached discussing some of the negative experiences that Black people have historically experienced in clinical research, while encouraging them to participate in research?
You let them speak their piece, but then you also want to point them back to the laws that are in place that prevent, for example, another Henrietta Lacks. There will never be another Henrietta Lacks because of the laws that are on the books. That can never happen again.
You understand, you meet them where they are, and you agree with their pain and how they feel. You validate it. But at the same time, you point them to what’s on the books and how that can never happen again, and tell them that they are in total control. If they decide to participate on one day, and then decide that they no longer want to participate, they can stop the whole thing and walk away. They are in total control.
What were some of the tangible things that made your trial experience a positive one?
I never had to guess where I needed to be or what I needed to do. Everything was so laid out. I never had to go back and ask, “What am I supposed to do today? What’s happening?” It was always laid out to me and I was given it in black-and-white, where after they shared it with me, I could also read about it. I never had to wonder what my next steps were.
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