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Women of Color With Breast Cancer Advocate for Change

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Published on May 11, 2020

When it comes to a breast cancer diagnosis, women of color are advocating for essential needs like, “How will I get to chemotherapy today?” “How will I afford it?” And, “Can I leave my job for a few hours to go?” Fortunately, there are organizations that can help.
 
Angela "Jersi" Baker, founder of Angel in Disguise, Inc., and Maimah Karmo, founder of the Tigerlily Foundation, recently sat down with Patient Power’s Andrea Hutton to share how their organizations are helping women of color. They discuss logistical barriers to treatment, mental illness and the importance of self-advocacy. Watch now to learn more.

This is the second of two parts. Watch or read the first 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.]

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Transcript | Women of Color With Breast Cancer Advocate for Change

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Recorded on May 1, 2020

Andrea Hutton:
Hello, I'm Andrea Hutton. I'm a breast cancer patient and advocate, and I'm very happy to have joining me today, Maimah Karmo, who is the founder of the Tigerlily Foundation, and Angela "Jersi" Baker, who is the founder of Angel in Disguise. Ladies, thank you so much for joining us today to talk to us about women of color and the experiences they're having with breast cancer, and all the work that you're doing to support these communities. Thank you, ladies, for joining us today.

Maimah Karmo:
Thanks for having me. I'm happy to be here and to share as much as possible.

Andrea Hutton:
Can you talk to us a little bit about what you're doing? And you can even sort of talk about why you were late, because you're actually out in the field right now.

Angela “Jersi” Baker:
Yeah. So first I would like to say thank you for having me, and I, myself, am a three-time breast cancer survivor. I'm currently living with stage IV metastatic breast cancer, and it recently metastasized to my liver. I was initially diagnosed in 2003, 2010, and became metastatic in 2011. And once I became metastatic, I still worked, but in 2014, some ladies were like, "Why are you still working?" And I really didn't understand that, because I didn't know a lot of people that look like me. And I was like, "Because my son and I still need to eat." But I went home, and I figured it out. And once I did that, I was like, "I can't sit home and do nothing." So I started handing out business cards to take people for errands and things of that nature.

And an organization called me and said there was a lady that needed to go to treatment, and they said she didn't have any money to pay, and she lived about 30 minutes from me. And I said, "Okay, that's fine." So I got in a car and went to get her. She didn't know me, and I didn't know her. Well, five hours later, two doctors’ appointments later, I was like, "This is what I'm supposed to be doing." If there are people like her who can't get to their appointment, because her kids were at work, there have to be other people that need these services. I just started a non-profit organization, and I've been doing it ever since.

And even with COVID, I haven't stopped, because I spoke to you guys yesterday and I was in the car, and then after I finished with—I call them vidas, I don't call them patients, because vidas means life. And after she finished her appointment yesterday, she had a little card and she was like—she's recently out of surgery and she said one of her breasts, it was swollen, it was filled with fluid. And she said, "They said I have to go to the hospital tomorrow to get an ultrasound and to have it drained." And I mean, what am I going to do? I can't just leave her, knowing she doesn't have a ride. So I put my computer in my backpack, and I took it with me and I said, "I'll get on the line like that." But unfortunately, technology didn't work out for me, but I'm here now.

Maimah Karmo:
This is how Tigerlily started. To Jersi's point, we can't wait to get better just to help other people. And I think that many people think, "I'm going to wait later when it's more convenient." And some people never have that convenience. There are patients who are needing screening, whose breasts are swollen, who are suffering, who's—getting a ride back to the doctor's office could save her life. And so, one of the reasons why I do admire her so much is that she's in it with her own situation and giving back to other people. And to her point, there are people that are facing that and don't have a car to get the treatment, they may not have food.

And so, there are so many issues that we want to fix systemically, with access to trials and people not getting screenings and people not getting, just getting diagnostics, and so forth. But there are simple things like, "How am I going to get to chemotherapy today? How am I going to afford it? If I am working a job where I'm essential, not essential, but I'm sorry, working a job in some kind of way, I have to leave my job for a few hours to go, how am I going to get there without a car, or will I lose my hours?" And so what people like Jersi are doing, these are really, really critical programs that need support.

Andrea Hutton:
So, Jersi, how are women finding you? Are you and Maimah working together? And how did you meet, and how is your community finding you and finding each other?

Angela “Jersi” Baker:
People are finding me by referrals from the doctor's office. About two weeks ago, the news did a story on me, so now more people are finding me—social media and from my website.

Andrea Hutton:
So, Jersi, what are you finding in terms of your own experience being treated, and the women that you're bringing to the hospital? What kinds of conversations are you having now about how hard this is?

Angela “Jersi” Baker:
Well, and I told my vidas that I was with today, I was like, "I'm probably going to talk about you." She's not working. Her job doesn't have short-term disability, which means she's not getting any assistance, any insurance. She's not getting a short-term disability paycheck. She has children she needs to feed, and it's just mentally hard. And like I was telling someone the other day, some people like me, I'm dealing with this fine. I'm dealing with COVID fine, and I'm still in the streets, and I don't worry about it, even though my mom really worries about me.

But for some people, this, on top of breast cancer, is going to be the straw that breaks the camel's back, because they can't cope with this. As African American women, we're worrying about how we're going to feed our children and pay for these doctor bills and things of that nature, so sometimes treatment is the last thing that we're doing and taking care of ourselves. And when that happens, your cancer, like Maimah said, may be in your body for a few months, and you don't even know it. And instead of dealing with it, and maybe helping yourself, you may be hindering yourself because of transportation or whatever issues, finances. That's just our reality. It's difficult.

Maimah Karmo:
Well, also, many women, are single parents as well. And I'm the biggest advocate, but there are times when I'm raising my—my daughter, she is 17 now, but she's had—has chronic health issues, and I'm trying to run an organization and empower other people. And I may be like, "I'll go up tomorrow, or I'll go next week," and I do go to my appointments. But the women who are in a different situation, who are working an hourly wage, they're facing some real challenges around, "Do I make this choice of going to get screened or follow up with my treatment? Or do I feed my one or two kids? Because I have no husband." I don't have a husband. I don't have any way to pay my bills if I don't pay myself or work my work, I don't get paid.

So there are things women are facing that are way in a place that is much more stringent than mine. But also to Jersi's point, people are going through mental health issues, because they're alone, and they're stressed. And then when I was in treatment, my daughter was 3 years old when I was diagnosed, I was working a full-time job, working a part-time job, building Tigerlily, raising a toddler, and I was so freaking stressed out. Some people already have mental health issues. They're already dealing with anxiety, depression, panic disorders. They might have other things like schizophrenia, God knows whatever. And those are real, real challenges. I have friends who are facing those. And you compound that with the breast cancer diagnosis and/or you're in treatment. You compound that with the fact that maybe now you're metastatic, and then you add on top of that COVID. People are cracking.

I see a therapist now, because I have people I love who are metastatic and are dying all the time. And at first I thought, "I got this. I'm a strong black woman. I don't need to go to therapy." And then one day, I was like—my body said, "No, you're done." You got to get—you take care of yourself, put on your own mask first. But there are patients who are facing real mental health crisis that's not being addressed because of COVID and the lack of access. And by the way, therapy's expensive.

Angela “Jersi” Baker:
Very.

Maimah Karmo:
Most therapists charge you between $90 an hour to two something per treatment. $90 an hour could be somebody's food budget for the month.

Andrea Hutton:
Right.

Maimah Karmo:
So I believe beyond just these clinical trial issues or financial or access, we need to really change how we see mental health. It's just really jacked up. Well, how can a patient who is going through something like this pay $90 an hour for therapy? She just won't do it. And she could end up being depressed, because she's being abused at home maybe. She could end up becoming suicidal. We have one patient that we talked to who was suicidal and she was like, "I can't do this," because she's adding all these things. And all the compounding things are now happening. So one of our things I want to bring up still to those who are watching is, how do we address people's mental health issues? Because it is real. And even every morning, Jersi, I'm sure, has—sometimes she's stressed out. I get stressed out, because we want to see our patients getting the help they need. So that's another thing for food for thought.

Angela “Jersi” Baker:
Yeah, I totally agree. And actually, I talk about it all the time, because I'm on Medicare. So Medicare pays for my health insurance to see a physician, but it doesn't pay for dental, vision or mental—mental illness. And then I say, "We need therapy."

Andrea Hutton:
I do want to hear kind of your—each of you, your call to action for women of color who are watching this. What can we do to help? And what can patients do to advocate for themselves now, during this crisis, and also just in general? What are some of the advice pieces that you have for women of color who are facing a breast cancer diagnosis?

Angela “Jersi” Baker:
For advocating for themselves, I say be more like me and use your voice as much as possible. I mean, if you don't—you don't know what you don't know, but if you don't ask any questions, then you're never going to know. And if you don't agree with something, then you say, "No, I don't agree with it." Or if a doctor's telling you something and you're questioning that, get another doctor or get a second opinion.

Andrea Hutton:
I think that's really important to empower women to get a second opinion, because if you're not comfortable with your doctor, then you are not going to get the best care. So that's a really, really important point. You have the right for that. You have the right to ask for that.

I want to thank our guests, Maimah Karmo, the founder of the Tigerlily Foundation, and Angela "Jersi" Baker, the founder of Angel in Disguise. Thank you so much for the work that you're doing in your communities and for joining us today. I'm Andrea Hutton with Patient Power. And remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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