[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Current law requires insurance companies to cover the cost of annual mammograms for women over the age of 40 without any cost to the woman. Unfortunately, individuals at a higher risk of breast cancer or those requiring follow-up imaging due to an abnormal mammogram result will likely be facing hundreds to thousands of dollars in patient cost sharing.
Komen strongly supports policies that eliminate the out-of-pocket cost of these medically necessary tests. Today’s guest was diagnosed with breast cancer after having to pay nearly $2,000 out of pocket for diagnostic tests all before she even got treatment. She was grateful she could afford it, but now wants to help other women to make sure they have the resources they need to get their appropriate diagnosis. Renee Williams White is here today to share more about her story, the importance of screening, and how she recently played a part in helping Susan G. Komen Center for Public Policy passed legislation in Maryland to do just that. Renee, welcome to the show!
[00:01:18] Renee Williams White: Thank you very much.
[00:01:19] Adam Walker: It is so great to have you.
Your story is kind of, well, I want to say I thought your story was unique. I’m realizing now your story’s not really unique and that’s kind of the problem. So tell us a little bit about yourself and how you were first diagnosed with breast cancer.
[00:01:33] Renee Williams White: Well, as you said, my name is Renee Williams White. I am happily married to my husband, Ken. For the past 15 years, I have had a wonderful almost 30 year career in banking and I enjoy my life very much. So I was quite surprised last May, and I woke up with this amazing pain in my left breast and it was nothing like I’d ever had before. And when I was looking, I noticed that there was some discoloration around the areola. And normally what I would’ve done is just, Dismiss it, find a way to say, ah, it’s nothing. But this seemed to feel a little bit different. So I called my doctor, I was able to get an appointment on the following Friday and went to see the doctor and in they, by that time, the pain had subsided and so they didn’t see anything, didn’t feel anything, but he did say that I was overdue from a mammogram from 2019. And so I had missed the past three years. So I, he went ahead and scheduled the test. I went to get a mammogram on May 13th, and the first thing that happened when I called for the appointment was that they told me how much it was. And I was a little surprised because we’re talking about something that I didn’t think there would be a cost to right off the bat.
The doctor also ordered a diagnostic, which said to me that he thought that there may be something. It was $1,850, and they wanted me to know that upfront. And thankfully, like you said in your introduction, I did have the money to be able to pay for that. And then they also added on a sonogram as well.
And so they wanted me to pay for that in advance. And so I, again, I had the money, so I was able to do that. And during that appointment, it was unlike any of my previous appointments that I had for mammograms where it, each time that they took some pictures, the technician said, I need to show the pictures to the doctor. And I thought that was unusual. I mean, I’m a woman of a certain age, and so I’d had mammograms and usually it’s about 10 to 15 minutes and they tell you, okay, we’ll see you next year. So I knew that this was a little bit different and it went on for about 45 minutes and each time she’d say, I have to go show the doctor.
And at the end she walks me down to where I’m going to have my next series of tests, and that’s the sonogram. And so the technician does the same thing. She starts taking pictures and she says, okay, “I need to go show the doctor.” She came back, takes some more pictures, and then she pulled out a ruler.
And I’m like, well, that’s in my brain. I’m like, “Well, that’s different. Never had this happen before.” So I’m sort of understanding that something appears to be amiss. And at the end she says, okay, so the doctor would like to speak with you. Well, again, that had never happened and I’d had several mammograms over the years and the doctor comes in and he says, Gwendolyn, which is my first name, we have identified some mass. Mass is in your breast and under your arm. We’re not certain if it’s in your lymph notes, but we need you to get a biopsy right away. Do you have any questions? I can barely speak yet. Alone formulate any thoughts And all I could say was thank you. I called my husband and I called my mom and said, “Hey, this feels a little different..”, I didn’t want anybody to be worried.
It took until June 28th. To be able to get a biopsy scheduled simply because it was so busy at all of the clinics. And it wasn’t until the doctor who spoke with me at the conclusion of my testing said to me he called me and said, “We’re waiting for your biopsy results.” And I said, “I can’t get an appointment.” And he said, “Okay, let me make some calls.” And he was able to make a call, and I was able to get the appointment on June 28th. And at the onset of the biopsy, the first thing I hear again is, here’s how much it’s going to cost. And again, I’m just like, well, at this point it’s even if I didn’t have the money and I’d have to find a way to get the money, but again, thankfully I have the money, so I was able to pay for it.
And they told me, because July 4th was coming, it was going to be a few extra days. On July 6th, 2022, the biopsy surgeon contacted me and said, Gwendolyn, once again, when you hear people call you by your first name, you know something’s a little amiss. And she said, “I have good news and bad news. Good news is it’s not in your lymph node. Bad news is you have breast cancer. Do you have any questions?”
[00:06:15] Adam Walker: Wow.
[00:06:17] Renee Williams White: And again, you really can’t formulate any thoughts. I was at work in my office. I once again contacted my husband and my mother and I started thinking what am I going to do? Well, I called the breast cancer center. I, they asked me to gather all of the testing and everything, and they set an appointment for me two days later. And that day led to my meeting, my breast cancer surgeon and my plastic surgeon and everybody else, and my nurse navigator and everything that could have been through that appointment went incredibly well and I was very hopeful during the appointment. And they make you feel like family. And so I knew, my faith told me I was going to be fine. And September 14th, the surgery went well. I woke up and I was like, “Is it still today?” And the nurses were like, “Yes, it’s still today.” “Well, can I see my mom and my husband?” And they’re like, “You have to recover for a couple more hours and then you could see them .” And that’s the journey.
[00:07:23] Adam Walker: Yeah. Wow. That’s an amazing story. Amazing journey. And as you were talking, earlier in that story about how when you called to schedule the mammogram, the first thing they said was the cost. And then you called to schedule that next one. The first thing they said was the cost. Like, it’s wonderful that you were able to continue to push through and do that in spite of the cost, but man, it’s terrifying how many people may have made a different choice in that situation and said, “You know what? It’s probably nothing. I can’t afford that. I’m not going to do that right now.” And what, how much worse the prognosis would’ve been down the road.
So, which is, I guess why o obviously why we’re here to talk about it, right? So, let, so, moving on into your story a little deeper, it sounds like early detection was critical to treating your breast cancer. I mean, is that correct? Can you tell us a little bit more about that?
[00:08:07] Renee Williams White: Yep.
Absolutely. I would say that I am so grateful that I listened to my body and that I immediately contacted my doctor and that the, my doctor was able to schedule the test. I was a little taken aback that there’s so much of a financial cost that’s mentioned to somebody that’s in a very difficult situation.
I’m grateful again that I had the resources and it wasn’t a concern for me, but I started thinking, well, what about women who don’t have these resources. I’m a banker and as a banker, everything has the financial cost to it. And I was, that’s all I could think about. I was consumed with what happens to a woman who doesn’t have the money to be able to pay $1,800 or $2,000 out of pocket before they even have gone to any kind of treatment.
And that was the thing that really prompted me to say, “Yeah I just don’t understand this and I need more information. I don’t want to form an opinion. I want some information and there’s gotta be some resources that I can look at to see how do we get, how do we do something?” I didn’t know what could be done. I just knew that I didn’t want any other woman. Again, because I’m a banker and I know people’s finances and I didn’t want anybody to be put in that position. If you’re somebody and you don’t have any savings, what are you going to do? You’re going to go back to work.
[00:09:29] Adam Walker: Yeah. That’s all you can do. And so we need bills in place to advocate for people so they don’t have to deal with some of that stuff.
So, are there any other barriers to care that you experienced? I mean, other than, just the, that sort of, again, profoundly frustrating, upfront barrier of it costs this much. Are there any other barriers that you had to overcome for this?
[00:09:55] Renee Williams White: There were, a couple of little things that occurred along the way.
I remember at that first initial appointment that I had with my gynecologist and the office said, “Well, pain is not really a symptom for breast cancer.” Now, had I listened to that I would’ve just dismissed it potentially and been in the position where a couple of years later, The outcome is very different, but I’m thankful that they ordered the test.
But part of the testing was because I was three years overdue. Had I not been three years overdue, I wonder what would’ve been the outcome when I was having my biopsy.
[00:10:37] Adam Walker: Now that’s a great point.
[00:10:38] Renee Williams White: And the surgeon said to the assistant, “Well, the lymph nodes look rather unremarkable.” Do you? And then the doctor says to me, “Do you want me to still do the biopsy?”
And I was thinking to myself, “Well, what does the doctor’s order say? Says, do the biopsy.”
But then I started wondering what happens to women who say, “Yeah, don’t do it.” And then it turns out that potentially there’s something that’s wrong. And now you’re in the point of, well, you, you were your decision maker.
And those kinds of things that I went through, I’m just like, okay, Renee, there’s some things out here. And again, I don’t want to ascribe anything to these things, but it just seems, is this an experience that a lot of women have? And if we’re having these experiences, why are we having this in 2022? Why are we still having a doctor say, well that’s, pain is not a symptom of breast cancer.
When I started doing my research and it was a symptom, How many times are we dismissing women who say things and they’re not able to get the testing that they needed? We haven’t even gotten to finances yet. We’re can’t even get the test. So I just started thinking about these things, right? And as I started to go further into my treatment, so once I was, had recovered from surgery and I knew I was going to be going through the radiation, I decided to go to the public library and just be in there for 3, 4, 5 hours so I could be used to sitting up and being active and paying attention.
All the things that I hadn’t been doing when I was recovering. And I started going to resources and over in my mind was going back to the Susan Komen website. Because I had done breast walk years ago and had given, donations over the years, and I’m like, well, let me go to this thing.
I don’t really know much about Susan Komen other than other women who’ve had breast cancer. There’s no breast cancer in my family, no history. So I really didn’t know a whole bunch about it, but I wanted to make myself knowledgeable. Not for, well for me, but for my younger relatives. And for the women in my family and for the women that are I work with and for my friends, I didn’t, if I could do something to prevent somebody from being in that situation, that’s what I wanted to do.
Or if they became involved in the situation, or as I call it, the journey, I wanted to help them on the journey. Because I didn’t feel like I had anybody who was helping me because they didn’t have the information that we need to have in the middle of my thinking, one of my good friends called me.
And she, because I’d been telling every woman I know, get a mammogram. That’s the, hello, get a mammogram. Before I could even say anything else, that was my new, mantra. “Hello, how are you feeling, Renee? I’m feeling great. Get a mammogram.” I was, that’s all I could kept saying. And so one of my good friends was, realized she was overdue and went to get a mammogram and she shared the experience with me of sitting in the lobby.
And there is just her and another woman. The other woman gets called over to the side where you pay and she hears the, they say “It’s $1,500. And the lady says, “I don’t have that.” And they said, okay, “Well let’s reschedule.” And the lady says, “Well, it’s probably going to take me about a year to save that.” And my friend recounted this story to me. And I thought, oh my goodness, what if there’s something going on in that lady’s body? And when she goes back to the doctor, what potentially could have been stage zero, stage one, stage two, even stage three has now become stage four, because she didn’t have the means and resources to pay for a diagnostic mammogram. And I realized, okay, there really is something to this.
Yeah.
[00:14:47] Adam Walker: Wow. That’s, wow, that’s an amazing story. So, in light of that let’s talk a little bit about some public policy work that you’ve partnered with Komen on. So, I know that you’re helping Komen Center for Public Policy change this in Maryland and you succeeded, I think it was Senate Bill 148 and HB 376 was signed to the law by governor Westmore. Can you share a little bit about your experience in providing testimony to law lawmakers and what that was all like?
[00:15:19] Renee Williams White: I certainly, so let me go back for a moment. So when I was looking at the Susan Komen website, I saw that they had something called an advocacy ambassador, and I was kind of intrigued by that and I started reading about it and it really is somebody who they teach you and empower you to go and meet with your representatives at state, local, and federal. And then in January we had one day summit in the, our state capital, and I live in the state of Maryland and so in Annapolis, Maryland and for the one day summit, they had set multiple meetings for us to meet with our representatives. They tried to have it be that we met with representatives from our own legislative districts and in some cases we, that, that took place. And due to the number of meetings, we were also able to meet with other legislators. And so it was absolutely great to go in there with the lobbyists. And the Susan Komen representative to be able to meet the representative who sponsored the bill and to understand that this is going to be a great start for women in the state of Maryland.
It was an amazing day. At the end of the day, we debriefed, we, because once our meetings were over, we then went to as many offices as we could with as many flyers as we could, and talked to them about just very quickly, here’s what’s going on. Can we get your support for the bill? Just straight to the point and they were incredibly supportive. And a few weeks later I had the opportunity to go and testify along with Susan Komen and on a panel with the sponsor of the bill, along with the, to get the bill out of committee so I could go to the entire Maryland state rep, the legislative representatives. And it was an awesome opportunity to put a real face and a real person to the cost that you hear about when you’re in the middle of a journey that can be one that unfortunately could have you lose your life. ANd for them to recognize “Okay, it’s going to help a lot of women in this state not have to have a financial burden as they’re having these diagnostic mammograms.”
It wasn’t a wonderful day, and then it was waiting and waiting and waiting, and I was trying to track, okay, “When’s the bill coming up for a vote?” And Komen is so great because they keep you up to date. So I knew when the bill was coming up for a vote. And once the bill came up for a vote, then it was, fingers crossed. And I’m like, okay, there’s no way this bill’s not going to pass. And it passed and it was absolutely fantastic to then get the opportunity to go back and be a part of Governor Westmore signing the bill. Representatives need to see the real faces of women who are in the struggle, who are on the journey. And so I am glad that I was able to represent women in the state of Maryland and be able to use my voice to say, okay, we’re here. We’re not going anywhere. We need your to take care of this and sign this for the women of our state. And I’m excited to know that we’re one of 15 states that has now passed the bill.
[00:18:42] Adam Walker: Yeah. So could you go into a little detail, like what does the bill do for the women in Maryland?
[00:18:46] Renee Williams White: Because mammography is the initial early step for early detection, and it’s not only the only thing that’s used to diagnose cancer, but it does help with early detection.
And because there are 12 to 16% of women screened with digital mammography, they require additional testing, which is diagnostic imaging, diagnostic mammograms, breast ultrasounds, and breast MRIs. It’s going to help def-defer the cost with your commercial insurance, the insurance company will pay for it 100%, no out-of-pocket cost.
[00:19:27] Adam Walker: Why is this legislation so important to addressing health equity?
[00:19:32] Renee Williams White: When you have black women that are dying at a 40% greater rate than our white counterparts, clearly there’s something happening with health equity and taking away the cost, the burden, the financial burden for a woman who is on that journey is significant.
That’s about creating health equity that will allow more women potentially to be saved because they’re going to get the chance to get the detection earlier. The earlier we know the earlier you are detected with breast cancer, the greater likelihood that you’re going to survive. Once you start to get to stage four, it’s that doesn’t mean you’re can’t survive, but it’s a much more difficult journey. And so the fact that we’re able to say that women taking this burden away from you, you don’t have to make the decision between bills and health. I don’t have to make the decision between my mortgage or my rent or I can’t take off from work. I mean, this is vital because none of those other things matter if you don’t have your health.
[00:20:41] Adam Walker: That’s right. That’s right. So, is there anything, is there any movement on this type of legislation at a federal level that you can tell us about?
[00:20:49] Renee Williams White: So in June, it’s really fantastic; all of the advocacyambassadors are going to be on Capitol Hill, and so we’re going to have an awesome day to be able to talk to as many legislators, congressmen and senators as we can to be able to be the face again of breast cancer, to look at them, let them hear our story in a two to three minute version, along with a public policy advocate.
To be able to say, Hey, we need you to support this national nationwide. It can’t just be the 15 states that have passed it. We’ve, we’ve gotta get this on a national basis. That every woman should be able to know that there is not going to be a financial burden when they have to have a diagnostic mammogram. And for myself, After having been diagnosed with breast cancer for the next five years, all of my mammograms are diagnostic mammograms. So because I don’t typically meet my my copay for the testing, that would be each year, those are going to come outta my pocket. In the state of Maryland, it’s about $2,000.
The costs vary from state to state. Komen has put together a commission to study that said the costs are between $234 and $1,021 while I live in the state of Maryland, which is right outside of dc and this is an expensive part of the country, so the tests are a little bit more expensive, but I’m thankful that I won’t have to have that financial burden. Over the next five years. That’s why it’s important, even after you’ve been had cancer, and then you have to continue to have diagnostic mammograms for a number of years. It’s nice that you don’t have that continued financial burden.
[00:22:40] Adam Walker: Absolutely. Absolutely. Well, so, so policy and advocacy work is so important in this field.
The work that you’re doing is going to affect so many lives, and I so appreciate the work that you’re doing. Let’s say there’s a listener that’s listening in that wants to get involved in advocacy work. How can they do that? Where can they go?
[00:22:59] Renee Williams White: Absolutely. Please do what I did google Susan Komen Foundation, go there, read the information. It’s got terrific resource. It’s not just about the policy, but just the shared stories. The knowing that you are not on this journey alone. That every day there are women that are being diagnosed with breast cancer. We all have a common story. We’ve all been diagnosed with breast cancer. We all want to survive and not only just survive, we want to thrive.
It just makes you feel better. It makes you know that you are connected to something and you’re going to be connected to it for the rest of your life. It’s an awesome feeling to know that you are impacting your legislators in your local area, in your state, and nationally to be able to hopefully continue to move forward in the fight with breast cancer. And if we can take away the financial burdens for women, I can’t think of anything that’s more powerful than doing that. So you can focus on getting well, reclaiming your life, doing the things that you love to do, but saying I want to be able to help somebody else on the journey that I’m on.
[00:24:12] Adam Walker: That’s so important. I’m so glad you’re doing that. I’d also mentioned that if you’re so inclined, you can also email policy@Komen.org. That’s policy@Komen.org and get involved that way as well. Renee, you’re an inspiration. So glad you’re doing well. So glad you’re doing this work, and thank you so much for joining us on the show today.
[00:24:33] Renee Williams White: Thank you.
[00:24:38] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit real pink.komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.