[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.
[00:00:17] Welcome to the Komen Health Equity Revolution podcast series on Real Pink. Each month we invited in patients, community organizations, healthcare providers, researchers, and policy advocates to discuss strategies and solutions that drive the healthcare equity revolution forward for multiple populations experiencing breast health inequities.
[00:00:37] I’m your host, Adam Walker, and today we’re tackling a topic that is often not talked about but deeply impactful, the cost of care during a breast cancer experience. From treatment and medications to unexpected expenses like transportation, childcare, emotional support, and lost income, breast cancer can come with a steep price tag.
[00:01:00] And for so many these costs create major barriers to care. Our guest today is Toni Lee, senior manager of the Patient Care Center at Susan G Komen. Toni and her team work every day to connect patients with financial and emotional support services. She’s here to talk about how navigators identify and address financial barriers and help ensure no one faces breast cancer alone.
[00:01:25] Toni, welcome back to the show.
[00:01:27] Toni Lee: Well, thank you, Adam. I’m excited to be here today and talk about this important topic with you.
[00:01:33] Adam Walker: I’m excited to have you I said this before we started recording. I’ll say it again. Talking to you and your team are some of my favorite.. I just love and so appreciate the work that you do, and it’s so critical and it’s so important and it provides such an amazing service.
[00:01:51] To so many people. So I just want to start with just thank you for what you’re doing. It’s amazing.
[00:01:56] Toni Lee: Well, thank you so much for that, Adam. We enjoy being here and being able to share the work that we do in the Patient Care Center.
[00:02:04] Adam Walker: Well, we love it. We love it. We love you. We love what you’re doing. So thank you.
[00:02:07] So let’s, but let’s start with the basics. This is a tough topic. For those who may not know, can you explain financial toxicity and what kinds of financial challenges people face when they’re diagnosed with breast cancer?
[00:02:22] Toni Lee: Yeah, great question. Financial toxicity is defined as the negative financial consequences experienced by patients and their families due to the high cost of medical treatments and some of the contributing factors of financial toxicity, you know, may include things like out-of-pocket expenses such as copays or deductibles, or the cost of prescription medications.
[00:02:47] It may come from, you know, a reduction in income as a result of less work hours or job loss due to treatment. Patients may also incur debt or borrow money to cover medical expenses and then the emotional distress, or that stress and anxiety as a result of financial hardship due to medical costs. And people, you know, diagnosed with breast cancer can have a wide variety of financial challenges.
[00:03:15] A few of those, you know, challenges that have been reported by people navigated through our Patient Care Center you know, have been insurance barriers. You know, maybe patients don’t quite fully understand their plan or their coverage. You know, they’re not sure what their financial portion may be or what they may have to pay out of pocket.
[00:03:36] Maybe they don’t have adequate coverage for a breast cancer diagnosis. Maybe you were healthy and you’re thinking, I don’t go to the doctor. I don’t need that kind of coverage. And then an unexpected, you know, cancer diagnosis comes along, or those that actually are uninsured or lack health insurance.
[00:03:53] We often see, you know, again, a potential reduction in income due to you know, the diagnosis and really, you know, an example could be those living with metastatic breast cancer or stage four, you know, they’re often no longer able to work due to treatment and the impact on the quality of their life.
[00:04:11] Yeah. We have patients who work more manual or physically demanding jobs and so they may not be able to continue working. And then some folks are in roles or positions where, you know, they don’t have those protections in the workplace such as, you know, FMLA or short or long-term disability benefits that could be available to them.
[00:04:34] And so we know breast cancer is one of the most expensive cancers in the US to treat. And you know, with a breast cancer diagnosis comes various treatments such as surgery, chemotherapy, radiation. While those like direct costs can vary from the stage and the type of cancer one has at the end, those can be several hundred thousands of dollars.
[00:04:54] And lastly, Adam, you know, looking through a health equity lens as part of Komen’s Stand For Her initiative work that we do. You know, financial toxicity from cancer treatment is a growing concern that hits some people particularly hard, including groups such as, you know, younger women. You know, maybe they’re earlier in their careers and they don’t have that financial reserve or those savings to cover a cancer diagnosis.
[00:05:18] Those in underserved communities we know often lack access or resources to high quality healthcare. Folks who are already lower income, were already struggling to pay the bills, now have a cancer diagnosis that really just kind of compounds these expenses. And then, you know, those who are uninsured or lack insurance are at greater risk of experiencing financial toxicity.
[00:05:45] Adam Walker: So let’s talk for a minute about the hidden costs of cancer treatment. Like I, I think, many of our listeners think about like the regular, like, you know, healthcare, they think about like the cost the medical cost. They think about the medicines or whatever. But there’s a lot of hidden costs that people don’t expect, like transportation, like getting childcare when you have to, you know, have your children taken care of when you’re going to get
[00:06:08] treatment or lost wages. So can you talk about some of like these lesser known burdens and how they show up and when you work with your patients?
[00:06:15] Toni Lee: Sure. So, you know, like you just mentioned with a breast cancer diagnosis, I think, you know, the perception may be that the only expenses incurred will be related to those medical treatments.
[00:06:26] Right. But I think however, you know, after, you know, someone has received their treatment plan and they now see like this could be potential months long treatments or the frequency of the treatments. Those practical barriers tend to come up, and so individuals often reach out to the Patient Care Center for assistance with these logistical barriers.
[00:06:50] And so, for example, you know, an individual may not have adequate transportation. Maybe they do have a car, but we often hear it’s older and may need some repairs. And so, you know. They need to get it fixed before they can use it, or they’re worried that, you know, daily radiation treatments will put some strain and could be an extra expense.
[00:07:11] Right? We have folks that utilize public transportation, which, you know, can make it harder to get to and from, you know, weekly appointments for chemotherapy or, you know, you don’t want to necessarily use that after having surgery. If you’re in chemo, you could be immunocompromised and you’re in the public, and you may have to take two buses to get to your cancer center, depending on the distance.
[00:07:34] Right? You know, we’ve seen a rise in gas prices. And so, you know, again, the number of increased appointments, that becomes expensive. It really is an extra expense. And if someone has a reduction in income or lost wages it becomes harder to meet the needs. And you mentioned childcare. You know, they may need more childcare because they’re at, you know, a three hour chemo appointment.
[00:08:01] Or even after treatment due to the potential side effects because you’re experiencing fatigue or pain and nausea and you can’t quite, you know, tend to your kids as you could before your diagnosis. So you might need help even when you’re not in treatment and you’re at home, you know, the rest of the week.
[00:08:17] Those side effects have really got you down.
[00:08:20] Adam Walker: Yeah. Wow. I mean, those are great examples. And I think, again this tends to go so much deeper than I think a lot of people realize. So, you know, Komen often talks about removing barriers to care. Can you explain how financial barriers might prevent someone from even starting or continuing treatment?
[00:08:41] Toni Lee: Yes. So I think, you know despite major advancements in breast cancer treatment, I think many breast cancer patients continue to struggle to access care due to financial barriers. And I want to back up just a little bit earlier in the breast cancer continuum of care particularly at the diagnosis stage, we often see those insurance barriers or financial barriers, such as having to pay a copay or a coinsurance.
[00:09:13] Or if now a biopsy is involved where they want to confirm if it’s a cancer diagnosis, patients have to now, you know, potentially meet and pay their deductible, which can be costly. That often delays care or patients will forego care. So I think I just want to, you know, bring it back just a little bit earlier in that diagnostic stage that we’re seeing those barriers kind of pop up.
[00:09:37] But then we see similar barriers arise when someone’s, you know, accessing treatment or trying to stay in treatment. You know, you have to pay a deductible. Or again, if you don’t have health insurance, you know, that can be costly. And we hear patients, you know, say when we’re navigating them, they need to pay thousands of dollars upfront before they can start treatment.
[00:09:58] So again, as a result, you know, they either delay care incurred debt until they find the means to pay for these expenses, which again, ultimately affects their health outcomes. And then we also hear, you know, like we just talked about, there’s increases in transportation expenses. Basic living expenses still have to be paid.
[00:10:19] You know, life is still going on in the background where rent and utilities, you have to eat. And then the additional expenses related to maybe you now need to purchase a wig because of hair loss from chemotherapy. Maybe you need mastectomy supplies after your surgery or you need a prosthesis. And sometimes it really becomes, for some patients, a choice between having to pay for basic living expenses or paying for treatment, which leads to these disruptions or delays of care, which again, ultimately impact their health outcomes.
[00:10:53] And then lastly, I just want to tie in our advocacy work through Komen Center for Public Policy and the work that they’re doing to really, you know, help alleviate that financial burden. You know, while patient navigation can really help facilitate access and connect to resources, I think it’s also important to mention that we need to have policies in place.
[00:11:15] Or change at that systems level to help, you know, prevent financial toxicity upstream. And that includes advocating for policies that, you know, would eliminate that patient cost sharing for those, you know, medically necessary diagnostic and supplemental breast imaging services. So when. You have an abnormal screening and now you need a diagnostic service that costs really, you know, can prevent people from getting that care.
[00:11:41] Or let’s remove insurance barriers related to cancer treatments, like out-of-pocket costs, prior authorizations, you know, copay accumulators. So I just wanted to tie it back that not only is it important to get critical resources to patients for that immediate need. We also need to be looking at ways that we can prevent financial toxicity from occurring in the first place.
[00:12:04] Adam Walker: Yeah that’s right. Now I know there are, you know, financial assistance programs that that people can get on. Are there times when those programs close or are not available to breast cancer patients and can and why does that happen?
[00:12:20] Toni Lee: Yes, I mean unfortunately, you know, there are times when financial assistance programs are not available for breast cancer patients.
[00:12:29] And in the US like I mentioned previously, you know, breast cancer is, you know, one of the most expensive cancers to treat. You know, we’re also seeing these rising costs of health insurance, and you know, right now there is some economic uncertainty in the backdrop. And so with more than 300,000 people each year diagnosed with breast cancer and an estimated, you know, 155,000 living with metastatic breast cancer, which we know is more costly and is ongoing, the need is just more than the philanthropic community can fully.
[00:13:06] And so, you know, due to those resource constraints, programs do close from time to time due to that overwhelming demand. And then, you know, programs, you know, will also review their eligibility criteria to ensure that they can really serve those who are experiencing, you know, the most intense financial pressures, which, you know, often come during when someone’s in active treatment or you know, those who are living with MBC.
[00:13:33] That’s an ongoing expense. And so I think you know this really only highlights the need for patient navigation more, that not only, as I mentioned, we do, we connect to those, you know, critical cash assistance programs, but our navigators can really work to find more sustainable options, like making sure someone is utilizing their existing insurance or that we’re optimizing their current insurance.
[00:14:01] Our navigators can really research insurance on, you know, state exchanges or on the federal marketplaces. We assess patients for Medicaid eligibility so that we make sure that they have like comprehensive coverage, or we work with financial departments at cancer centers so that we can really tap into resources that may not be so broadly known but are only available to people that, you know, get their treatments through a specific cancer center.
[00:14:27] So we take, you know, more of a holistic approach of, yes, connecting to resources is important. But also, again, looking at those more sustainable options that help prevent financial toxicity. Should a recurrence occur or should another serious health condition come up, our patients are now better equipped to navigate the healthcare system in general.
[00:14:49] Adam Walker: Right, right. So you’ve already mentioned a couple of examples of things that the Patient Care Center does to sort of provide support. Is there, are there any other examples you have of how. You help remove financial barriers for patients?
[00:15:03] Toni Lee: Yeah. You know, our navigators provide support to remove financial barriers in many different ways.
[00:15:11] And again, it depends on the specific barrier, each patient reports. And since navigation is so individualized or personalized you know, there’s different ways that we can do that. But in general, I think our process, our navigators complete a barrier assessment in which the navigator really identifies, you know, what financial barriers the patient is experiencing.
[00:15:33] And then we work with the patient on setting goals and a plan to address that barrier. So again, depending on the barrier, it could look like, are we educating them on insurance optimization? What about educating them on employment rights? You know, talking about are they eligible for FMLA? Are they eligible for short term or long term disabilities?
[00:15:57] What about reasonable accommodations in the workplace where you may not have to, you know, quit your job or stop working? You may have some accommodations that can protect you during your cancer treatment, we can connect to financial counselors and finding out, you know, can you make payment arrangements for your medical bills that, you know, maybe you’re paying a small amount over a length of time, but that helps protect, you know, things going into collections or bankruptcy.
[00:16:27] And of course, you know, researching and connecting to those, you know, financial or cash assistance programs for basic living expenses such as rent, utilities, transportation programs. And then also I think what’s, you know, important, particularly with some of the new treatments with your oral chemo meds or your immunotherapies, those drugs are very expensive.
[00:16:49] But our navigators can assist with prescription assistance programs or copay assistance programs. And so they really, the navigators were research resources, you know, on the national level down to the regional and then, you know, connect with also local resources in patients’ community.
[00:17:08] Adam Walker: Alright. Okay. So it occurs to me that, you know there’s the physical side of this, there’s the financial burden of this, and that comes along with some like emotional needs, emotional distress as well.
[00:17:28] How do you, can you talk about a little bit about how you help navigate that also?
[00:17:33] Toni Lee: Yeah. Well, I think as part of the initial barrier assessment, our navigators will also inquire about cancer related distress through a distress screen thermometer you know, for individuals who are experiencing high emotional distress, and the patients will self-report on a scale of one to 10.
[00:17:56] And we often hear that, you know, those that are experiencing high emotional distress, that one of the contributing factors is the financial strain or pressure due to the breast cancer diagnosis. So it’s very stressful not knowing if your rent’s gonna be paid or if you’ll be able to buy groceries or afford your medications.
[00:18:15] You know, that can really increase stress and anxiety in breast cancer patients. And so our navigators, you know, also address these emotional needs by, you know, having a trained staff member follow up with a patient. We connect with social workers or counselors at their cancer center or you know, in their community to get that more long-term emotional support.
[00:18:38] We can connect patients to support groups like Komen’s, you know, Facebook support group or local support groups, or some patients we connect with more of that one-on-one peer-to-peer support program. Those things can all be very helpful. And our navigators can work with a patient as long as they need.
[00:18:58] And in fact, you know, during Komens last fiscal year the data has shown on average a 14% decrease in both financial and emotional cancer related distress after working with a Komen patient navigator.
[00:19:15] Adam Walker: Fantastic.
[00:19:16] Toni Lee: Yeah. And this data really speaks to the value of patient navigation in that, you know, navigators not only connect to critical financial resources, but it’s also helping to reduce that emotional cancer related distress.
[00:19:29] It often comes with those financial barriers, which is just as important. And so again, navigation looks at, takes more of a holistic approach. And we’re seeing that it’s working and having a reduction and improving quality of life.
[00:19:45] Adam Walker: I love that. I love that. All right. So, so right now what would you say to someone that’s listening at this moment that’s overwhelmed, that’s trying to figure out how they’re gonna pay for everything that’s feeling stuck?
[00:20:00] Toni Lee: Yeah. Ask for help. Don’t be afraid to ask for help.
[00:20:04] Adam Walker: Yeah, that’s right.
[00:20:05] Toni Lee: I’m a breast cancer survivor myself, so I can understand. That overwhelming feeling that comes with a breast cancer diagnosis. But ask for help. And you could start by asking, you know, for a social worker or a nurse navigator or a patient navigator at your cancer center or you may want to talk to a financial counselor at your cancer center.
[00:20:32] And, you know you’re re you know, beginning to receive bills, you’re receiving all these resources. So you can always also like ask a trusted family member or friend to kind of help you organize or sort out all of that information and expenses that are being thrown at you. Right. And then, of course, contact, you know, Komen’s Patient Care Center to get connected to a patient navigator so that we can help get connected to financial resources and education.
[00:21:00] You don’t have to go through this alone, and Komen is here to support. And if you don’t have a patient navigator at your center again, Komen’s program is virtual and that we can help fill in those gaps. But definitely ask for help and don’t go through this alone.
[00:21:19] Adam Walker: That’s right. You’re not alone.
[00:21:20] That’s that’s one of the most important things. Every time I talk to you or one of your team you’re not alone. And that’s why the patient navigators are here.
[00:21:28] Toni Lee: Yeah.
[00:21:28] Adam Walker: So is there a story or a moment from your time working at the PCC that really highlights the impact that this kinda support can have on a person’s life?
[00:21:41] Toni Lee: Yeah. So I have been here since 2021 when they launched the Patient Care Center. And I have to say like over the years really just receiving and seeing all of the positive feedback from our patients really warms my heart. Our patients are so grateful for the assistance our navigators provide and, you know, we often hear things like, you know, Komen has been a true blessing in my time of need.
[00:22:08] My patient navigator helped me stay in my home and stay in treatment for two months because we got them rental assistance or, you know, my navigator helped me get financial assistance for my medication. So now I don’t have to choose between buying food or paying for my medications this month. And I think, you know, as we’re, when we’re speaking with patients and you know, we’ve gotten them connected to resources, you know, you can really hear their smile over the phone or you can sense that
[00:22:37] feeling of relief that comes over them when they hear that they’ve gotten some, you know, assistance for, you know, whatever it is, their medical bills, basic living expenses. And so I think, you know, overall the work that we’ve done through the Patient Care Center and just really hearing some of this great feedback just really touches my heart.
[00:22:54] And it knows that we’re helping folks, you know, bringing people along during their journey, knowing that they’re not alone. It’s just, it’s very overwhelming and I’m so honored to do this work.
[00:23:06] Adam Walker: It’s rewarding and amazing and important work. It’s so, so important. So, so Toni, then how can our listeners reach out if they or a loved one need help, either financial, emotional, or just figuring out next steps in their breast cancer journey?
[00:23:22] Toni Lee: Yes. If anyone listening needs help or know someone who is in need of assistance. They can contact Komen’s breast care helpline by calling 1 8 7 7 4 6 5 6 6 3 6 or email helpline@komen.org to get started. And the helpline is available Monday through Thursday, 9:00 AM to 7:00 PM Eastern time and Friday, 9:00 AM to 6:00 PM Eastern Time.
[00:23:48] And they also have bilingual Spanish navigators for those needing assistance in Spanish.
[00:23:55] Adam Walker: That’s right. That’s fantastic. Well, well, Toni you’re amazing. You’re doing amazing work. Please keep up the good work. You’re helping so many people and it’s, it has such an impact on this community. So thank you for what you do, and thank you so much for joining me on the show today.
[00:24:09] Toni Lee: Thank you, Adam. Thank you for addressing this topic.
[00:24:13] Adam Walker: And for anyone listening, whether you’re currently in treatment or supporting a loved one or you just want to learn more, please know that help is available and you can reach out. Thank you for joining another episode of the Komen Health Equity Revolution podcast series.
[00:24:29] We will continue to galvanize the breast cancer community to support multiple populations experiencing breast health inequities. To advance and achieve breast health equity for all. To learn more about health equity at Komen, please visit komen.org/health equity. And to learn more about resources and support, please call our Komen Patient Care Center at 1 8 7 7 4 6 5 6 6 3 6, or email helpline@komen.org to get started today.
[00:25:06] 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 at Susan G Komen on social media. I’m your host, Adam. You can find me on Twitter at AJ Walker or on my blog adam j walker.com.