Unexpected Financial Burdens of Metastatic Breast Cancer

[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

Continuously increasing treatment costs for patients with metastatic breast cancer can create financial hardship, which is known as financial toxicity. According to the Kaiser Family Foundation, more than 50% of women delay or avoid breast cancer care because of the associated cost. Financial toxicity can lead to difficulty accessing nutritious foods and paying bills, as well as keeping up with the cost of basic living expenses.

There can be many other hidden costs that add up quickly, including the cost of childcare during medical appointments and gasoline for trips to the doctor. All these stressors negatively impact cancer care by affecting patient’s health, medication adherence, quality of life, and mental health. Here today to talk about these unexpected costs associated with MBC diagnosis are Komen Scholar and professor of medicine in epidemiology and director of the Breast Cancer Program of the Herbert Irving Comprehensive Cancer Center, Dr. Dawn Hershman, and an incredible woman who has been living with MBC for 18 years. Deborah Croskrey. Ladies, welcome to the show. 

[00:01:29] Dr. Dawn Hershman: Hello. 

[00:01:31] Deborah Croskrey: Hi. Thank you for having us.

[00:01:33] Adam Walker: Thank you for being here and so happy to be talking about this. It’s such an important thing. I think it’s something that a lot of people are very concerned about. So, Dr. Hershman the most obvious financial stress for a patient living with MBC might be thought of the thought of growing medical bills, but from the big picture perspective, what are some of the other most common further reaching financial repercussions that they might face as they progress through treatment?

[00:01:59] Dr. Dawn Hershman: Yeah, I mean it really can be a downward spiral I think for a lot of patients. because most people’s livelihoods are affected. So most people get insurance from their jobs. If they are not well enough to be able to continue their jobs, it can affect their insurance as well as their, their ability to pay bills, their rent, their mortgage, really the global cost for their children and everything else. And so sometimes we focus on big ticket items like the cost of their drugs, which is enormously expensive or scans and other things. But we don’t pay a lot of attention to the other hidden costs; as you mentioned before, transportation, parking tolls.

Every time you come in for treatment, you’re missing a day of work you aren’t paid for that. And you know what end people end up doing is they have to make choices. Some of those choices are, do they have money to pay their rent or not? Do they have money to pay for food or not? Can they afford the costs of their supportive care medications or even their other medications for chronic conditions such as diabetes or hypertension? And so the, the repercussions are pretty widespread. That can affect other aspects of their health and wellbeing as well as the wellbeing of their family. 

[00:03:35] Adam Walker: Yeah. Wow. I never really thought about a lot of those things. I really appreciate you sharing that. So, Deborah, I understand you were diagnosed with I think de novo metastatic breast cancer 18 years ago, which is just remarkable. Can you tell our listeners a bit about the experience of your diagnosis, and did you start aggressive treatments immediately, or tell us more about that? 

[00:03:59] Deborah Croskrey: Sure. I was diagnosed on April Fool’s day of 2005, and it was sort of a quick diagnosis. I went in for what was supposed to just be an ultrasound. I had never, I’d never even had a broken arm in my life.

That is how blessed I was from a medical standpoint. So to be thrown right into a breast cancer diagnosis was definitely out of my line of sight at the time, at age 30, and we didn’t know. Immediately they did not run a scan to see that it was metastasized to my lung. I had distant lymph nodes that were impacted, but I did not have any lung scans at that point until we did a mastectomy and like two weeks later, before I started chemotherapy, we did a scan that showed it had metastasized already.

So I did the mastectomy first, and then I did dose dense chemotherapy I did Adriamiacin and Cytoxan, then directly after that, I went straight into radiation. During that time, I had gone on a short-term leave of absence from work. I was working for a big box retailer. I was on a career path to become a district manager with them. And this sort of derailed my career path. And I did return for a little bit, and then we had bone metastasis. So I went back into treatment and left work Thanksgiving of the year after. So it was a challenge. And then I was on Herceptin and Zometa and Faslodex for seven years. I had a hysterectomy to help with treatment. I did the Herceptin, Faslodex and Zometa. It resolved everything and I’ve been no evidence of active disease for over five years. 

[00:05:53] Adam Walker: Wow. That’s fantastic. That’s great news. 

[00:05:55] Deborah Croskrey: Isn’t that crazy? 

[00:05:56] Adam Walker: That’s a, that’s amazing news. 

[00:05:58] Deborah Croskrey: When I wasn’t supposed to make it. 10 months, here I am, 18 years later. 

[00:06:01] Adam Walker: Wow. Well, love that story and I appreciate you sharing with us, so 

[00:06:06] Deborah Croskrey: I love it, too. 

[00:06:07] Adam Walker: I guess my next question then is what sort of financial challenges have you experienced because of MBC and treatments? Anything you didn’t expect there? 

[00:06:15] Deborah Croskrey: Right off the bat, I went from having one doctor to a team of eight and every doctor was a specialist, so it was a $50 copay every visit and some doctors, I was having appointments up to three times a week with various doctors. So if you can imagine that copay. And then during treatment, I had to do a copay for anytime I went in for chemotherapy. And whenever I went to radiation, it was a copay for every radiation treatment. So if you can imagine 40 straight days of $50 copays when you’re not working, and at the time my employer required a second opinion on virtually everything. So I would have my own team of doctors, and then I would have my second opinion doctors, and they delayed my long-term disability for.

More than six months. I don’t remember right off the top of my head. I know we were behind in our house payment, $10,000 and once with interest and everything, we ended up losing the house because of we chose treatment over the house and a little bit later we lost a couple of cars. 

[00:07:32] Adam Walker: Wow. That’s tough. And so how have you been able to cope and find support, through all those challenges? 

[00:07:39] Deborah Croskrey: Back then there wasn’t a lot of social worker help through the hospital system. You kind of just had to figure it out on your own. I have since recently found there’s a mental health kind of organization in the area that has a social work team that you can apply for help through, and the social worker will help you with the forms and get everything faxed for you. Back in the day, you had to pay some of other hidden costs. You had to pay to get your records. You had to pay for your doctors to fill out the leave of absence, paperwork, and the paperwork, getting it all faxed.

Sometimes some offices would charge you a per page fax. So it was interesting. It was interesting, all those little hidden fees that you’re like, “I owe $30 for what?” And they’re like, “Oh, we received a fax from this doctor.” And so I would have to pay before I would really be seen. And I did have a conversation, like one, one chemo trip, I sat down and she goes, “You owe us $15,000. How are you going to pay for that today?” And I was like, “I’m not, I don’t have it.” So- 

[00:08:53] Adam Walker: Wow. 

[00:08:54] Deborah Croskrey: Yeah, that’s it was interesting that, 

[00:08:56] Adam Walker: That’s gotta stop you in your tracks right there, man. 

[00:08:58] Deborah Croskrey: Oh, it does. 

[00:09:00] Adam Walker: Oh, okay. So, so then Dr. Hershman back to you. I understand you’re leading a research study on interventions to reduce food insecurity and patients with MBC. Can you tell us more about that study, what you’re hoping to learn, and how this research will ultimately help patients? 

[00:09:19] Dr. Dawn Hershman: Yeah, of course. We’ve done a lot of research over time, focusing on this issue of financial toxicity and there are quite a few trials that are underway that focus on financial navigation to try to help ease that burden because part of it is connecting patients to services that may be available one way or the other to try to help.

Mitigate some of these factors. What we’ve found, I take care of patients in New York and Washington Heights and we have very high levels of poverty the catchment area of the hospital around Columbia Presbyterian Hospital. And we sometimes, we’ve done series of investigations that have found some really key social determinants of health, such as food insecurity, have rates upward of 25% in our metastatic breast cancer patients. And we know that nutrition is key to being able to tolerate and mitigate side effects of therapy can be really important in terms of, tolerability of the medications that we give. We also know that, ironically, that patients that are more food insecure have a tendency to sometimes even have higher obesity rates because they don’t eat healthy foods. People eat foods that are less expensive, which have a tendency to be higher in fats and sugars. And we know that obesity and nutrition are key in terms of cancer outcomes. So, one of the things that we are doing is looking at ways of providing what we call food navigation to our patients that have evidence of food insecurity, and people say, “Well, what is food insecurity even mean?” So you know, we sort of define that and others have defined it as really running out of food before you get your next source of funding money from SNAP or other benefits and not having enough to last you throughout a month. And so the thought is that for patients that do identify with some source of food insecurity. Can we use a payment structure through food delivery services to link community-based organizations and also to directly provide food? Because one of the things we’ve seen is that, our patients that have high food insecurity have higher rates of emergency room visits and hospitalization.

Now, that may be multifactorial, but it also may be related to all of the different stressors that are going on financially. And so the thought, the first thought is, can we engage patients to an intervention that focuses on food and nutrition, but not just saying, you need to eat better, but here’s the food to eat better and does that have downstream effects in terms of improving the quality of care that we give? 

[00:12:32] Adam Walker: That’s great. And so are there any additional resources or specific resources you can point that, share with us about where you point MBC patients that are having sort of that difficulty either paying for treatment or handling basic expenses?

[00:12:46] Dr. Dawn Hershman: I mean, I think every community has its own community sources of, whether they’re publicly or privately funded, community-based resources, and we partnered with a delivery service that well where we will pay them to give. But there are a number of other community-based organizations that work through, not just through our hospital, but through our surrounding community.

I think that people exist. I mean, it is tragic in the world that we live in with so much excess, so much waste that we live in an a time where 25% of our metastatic breast cancer patients don’t have enough food to eat, right? That’s a solvable problem as as I’m concerned. Some of these other problems can be overwhelming to solve, but that is something we should be able to solve. And so sometimes it’s asking because if you don’t ask, you would never know. And so the first step is universally asking so that you can connect people to the services that are available to them. 

[00:13:55] Adam Walker: Yeah. That is a solvable problem, and I love that you’re taking steps to help support that community along those lines. So, Deborah, last question to you. What advice do you have for others that may be in your situation or situation you’ve walked through already that are struggling? Is there anything tangible that they can do today? 

[00:14:16] Deborah Croskrey: I would say to start off, first and foremost, ask for help. Don’t be afraid to ask for help. Find out what resources are available within your community and within your hospital network. Also, there are some things like talking to your congressman and your representatives to get more grants and funding in place for these services and reaching out to them because lot of them whenever I spoke with them in advocacy sort of way, they don’t really see that disconnect in services and so we, the more voices they hear, the more apt we’ll be able to get reform and things changed. There is a bill up for conversation and it is to get rid of or do away with the two year wait for Medicare and the five month without employment to wait before you file. So they’re looking for metastatic breast cancer patients to be able to narrow down that wait time on both of those. I know I have a dear friend that she didn’t even try to get on to disability because she had to, she felt like she had to work full-time to keep her benefits and that she couldn’t, and she ended up dying before there was any sort of reform available to that.

Another thing is to check with your mental health services in your city or state to see if you can qualify for a social worker to help navigate through all the things. They usually have more insight to what programs are available in your area, and it helps to have a navigator on board. 

[00:15:57] Adam Walker: That’s great advice.There are people working on this problem, there are programs to help alleviate this problem. And like you said, reaching out for help is that first step. So reach out, ask and hopefully there are programs available in your area. So, Dr. Hershman Deborah, thank you so much for joining us on the show today. Thank you for the great work that you’re doing. 

[00:16:22] Dr. Dawn Hershman: Thank you. 

[00:16:23] Deborah Croskrey: Thank you. It was a pleasure.

[00:16:28] 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 at AJWalker or on my blog adamjwalker.com.