Insurance and Financial Issues
In this section we explore the experiences that the people interviewed had with paying for their treatment and other expenses. Those with insurance talked about what it was like to work through insurance issues and paying for treatment. Those who were not insured or whose insurance was not adequate described how they struggled to get needed treatment and to cope with the costs of their care. Both those who were well insured and those who weren’t talked about the emotional toll of dealing with financial and insurance issues. Our Resources and Information page includes organizations that can help people with breast cancer deal with financial issues, including things like out-of-network care.
Insurance is Important because Treatment is so Expensive
Sharon, who had what she called “wonderful” health insurance, estimated the total cost for her breast cancer treatment, including mastectomy, reconstruction, and chemotherapy was “well over $300,000.” She said, “most of us don’t have $300,000 just laying around…when they say cancer treatment really impacts a person’s financial well-being, they’re not kidding.” As Amy noted, it’s “horrifying when you look at the dollars and cents and realize…what that might mean if you are indigent.” A number of the people we interviewed had no insurance, inadequate insurance, or a family history of poor coverage.
Maria de Los Angeles was turned away from a clinic because she was uninsured.
Maria de Los Angeles was turned away from a clinic because she was uninsured.
So, I waited a few weeks for the results, and they called me and said that they wanted to speak with me in person, and then they told me that it was cancer. Yes, it was hard. I was worrying because we didn’t have the means, the money. And as a Hispanic or Latino, well, one worries, right? That what if the medical insurance. We searched for information. They sent us to a clinic where, by the way, since I didn’t have insurance, they rejected my first appointment.
Entonces esperéunos,unas semanas para los resultados y me llaman que, pues que querían hablar conmigo en persona. Y, pues me dijeron que era cáncer. Sí fue duro. Era preocupante. Porque no teníamos los medios y el dinero. Y uno como hispano o latino, pues se preocupa, ¿no? Que tal vez que el seguro médico. Pero gracias a Dios, es de, pues me ayudaron mucho. Buscamos información, nos mandaron a una clínica donde, por cierto, por no tener seguro, me rechazaron la primera cita.
Asante has good insurance, but her mother, who died of breast cancer, did not.
Asante has good insurance, but her mother, who died of breast cancer, did not.
You mentioned having really good insurance. Anything to add about that? You totally don't need to, but just opportunity if there was anything?
The difference between getting chemotherapy in the facility that you have insurance and the difference between giving it in the clinic.
Yeah.
That's life or death.
Yeah.
You know? And I do feel like if my mother had better health insurance, that she would be alive today.
Learning How to Use Health Insurance
The breast cancer experience of many people we interviewed included hard lessons about dealing with health insurers. Insurance covers medical expenses, but policies often come with deductibles (a certain amount that the insured person must pay themselves before the coverage kicks-in) and cost-sharing (a percentage of each bill that the insured person must pay). Both deductibles and cost-sharing caps typically start over with each calendar year, so that how much people must pay out of their own pockets depends on the time of year at which expenses happen. These complicated policies are hard to understand and can make financial problems related to breast cancer worse.
Alice didn’t realize one of her treatments was only partly covered by insurance.
Alice didn’t realize one of her treatments was only partly covered by insurance.
This hospital served me papers because I did not know that my radiation was only 80% covered. And they sent me this ridiculous bill, which I just kept putting under papers and things. And then, finally, I get this very legal looking thing saying you're being sued by this hospital. I was like, “Wait a minute!”
Another common problem described by patients is the amount of work it took to manage their insurance companies’ rules and procedures related to referrals to additional clinicians, prior approval for treatments, or changes in employer-based insurance plans. As John said, “you have to stay on top of it. To me, that’s kind of crazy because you’re dealing with your illness…it’s just, it can be overwhelming.” Other people we interviewed ran into issues with accessing the services they needed in their town because they were not covered by her insurance.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
Denise had limited options, due to her rural location, but advocating for herself proved helpful.
OK. So, in the town that I live, it's a small town, but they do have a place where they do sell prosthetics. My insurance wouldn't allow me to go there, so while I was getting treatment, there was a place there in that town; however, they kind of closed that up. Then at that point, they said, "Now you need to go to [LOCATION] to get your prosthetic." [INAUDIBLE] First and foremost, I don't even have time to take off work to go bra shopping or go get prosthetics. Come on, people. So, I walked into my local place, and I just started crying, and I'm like, "I don't get this. I don't understand this. You're right in my back door. Help me out." And so, that's when a phone call was made, and they made it work magically. I don't know how, but it broke, it broke, again, it had to break all the way down and then voila. It's like, come on. You shouldn't have to fight just to feel like a human being.
Peggy describes the many steps involved in getting her medication.
Peggy describes the many steps involved in getting her medication.
You didn't really have too many issues with your insurance. How has that been now with this re-diagnosis?
It's been decent. There was a little hiccup with the medication at the beginning, because they didn't want to approve it. So, it took an extra couple days, which, you know, seems like an eternity to me. To them, it's nothing. But they finally approved it. But they only approved 15 days' worth for the first three months. So, then you had to keep calling every other week to have it mailed to you, because I can't run to [LOCATION] for a prescription every other week.
Is that still what's going on? You have to have it renewed, or did they…
No, after the first three months, now I can get it monthly, which is nice, because one- there was one issue, where I was getting it every other week, where they sent it out late. And then they told me- then I had to sign for it, which they didn't tell me I had to sign for it, because every other time, I didn't.
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So eventually, I got it. But that was like, I'm the person that I would call every day if I don't get a call back.
Some patients are able to rely on their doctors (and doctors’ staff) to help them deal with complicated insurance paperwork. Victoria’s doctors, for example, told her “focus on your health and everything about payment and all that, we will help you to apply.” Others found their doctors’ offices didn’t deal effectively with insurers. As Lisa S. noted, incorrect coding of treatment can lead to insurance denying payment.
Employer-Based Health Insurance
Many of the people we interviewed were covered by private health insurance linked to their employment. For some, this insurance offered good coverage. Sally, for example, said her insurance was “awesome,” noting that she “never saw one bill.” Similarly, Alison, whose coverage was with a large HMO, explained “as soon as I was diagnosed, all of the co-pays went away, all of them.” Michelle is pleased that her insurance “even is covering [her nipple] tattooing,” allowing her to “go to the premiere tattoo-er here in town who has this amazing practice for medical patients.”
Others, however, described problems. Although in the United States as of 2020 the federal government mandates coverage for some aspects of breast cancer treatment, one problem we heard about was insurance limiting people’s choices about the care they would receive. As Maria H. observes, “insurance is what’s in charge, yes or no.” Lisa S. found that her insurance dictated what kind of implant her surgeon could use for her reconstruction. Denise’s insurance covered only certain doctors and facilities, meaning she “had to travel an hour to get treatment,” and be the go-between to assure procedures were covered. For patients concerned about hereditary breast cancer risk, insurers were inconsistent in determining whether they should be covered for genetic testing.
Another problem people described is the cost-sharing required under many employer-based plans. For many of the people we spoke with, the high costs of treatment meant that paying even a relatively small percentage of costs was stressful and difficult.
Michelle used smart timing to reduce her out of pocket costs.
Michelle used smart timing to reduce her out of pocket costs.
I had gotten smart and moved my mammograms from December to January because that first go-round, I had to pay my out-of-pocket maximum in two different years. So, in December, I had to pay it for 2012. And for 2013, I had to pay it because of all the different procedures. So, I got smart and moved my mastectomy, or excuse me, my mammograms to January. Several people described ways in which their insurance companies had difficulty dealing with anything out of the ordinary. John, for example, found that his insurer initially rejected his breast cancer expenses: “they see a man's name and a breast cancer diagnosis, well, that can't be. We're not paying that. What's wrong here. Without investigating, they just dismissed it.”
Several people described ways in which their insurance companies had difficulty dealing with anything out of the ordinary. John, for example, found that his insurer initially rejected his breast cancer expenses: “they see a man's name and a breast cancer diagnosis, well, that can't be. We're not paying that. What's wrong here? Without investigating, they just dismissed it.”
Casey, who is trans, experienced issues with his insurance company.
Casey, who is trans, experienced issues with his insurance company.
They just were all confused over, “What?” Because I told them male, and all my records say female because it has to be. I mean, unless I change it, but I'm still going to because I had female breast cancer. So, it wasn't male breast cancer. It was female breast cancer.
So what was that like, in terms of having to do that, having gone through the transgender kind of surgeries and so forth?
And then—
And then having to switch back?
Oh, it sucked. It sucks because you should, I shouldn’t have had to do that, my opinion. It should have just, but that's a whole gender issue thing. That's a whole another stuff going on. But once I told them, and then it confused them for a little bit. I mean, on the phone, “What? Wait. What? What?”
You said it confused them and it kind of sucked. Was it a morass, or was it a lot of haggling or hassling?
No. No. It was just to tell them. They were confused. Because everything was he, you know. If I had any other appointments prior to this, it was all he and everything else. And then they get the claim for female breast cancer, and they went, “We're denying this.”
So, I had to call them up because they denied it, and that would've been hundreds of thousands of dollars.
Right.
And I was not going to pay hundreds of thousands of dollars. I don't have hundreds of thousands of dollars to pay for this stuff. I mean, I was only halfway into it, and they denied it all, and I went, “Crap.”
Medicare and Medicaid
Several people we interviewed received their insurance through Medicare or Medicaid, which are the two main forms of public health insurance in the United States. Medicare provides coverage to people after age 65, and some people with disabilities, while Medicaid covers people whose incomes fall below a certain level. Additionally, in all fifty states special Medicaid funds will cover the costs of breast cancer treatment for individuals who are otherwise uninsured. Janet B.’s experience with Medicare, which she receives because she is disabled, had not been as good as the “regular” insurance she had through her job when she was still working. Kim, on the other hand, found that Medicare provided her with good coverage, though she did pay extra for a “premium” policy that allowed her to keep her own doctors and would cover a “$9,000-a-month medication that I may need at some point.”
Katrina worries that being on Medicaid meant receiving lower quality care.
Katrina worries that being on Medicaid meant receiving lower quality care.
I don't know. I don't know if they, I don't know if they do them different or not. You know, it just, you just, I just sometimes you hear, “Ooh, they on Medicaid,” you know? I don't know what that means. Is it supposed to be a different type of care, you know?
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So, I just, even if you visit hospital, you know, you can just overhear stuff, and be like, “Oh, that, yeah, they on Medicaid.” And just, does it matter? Do Blue Cross matters from them? Or do they go first? Do they put Medicaid last?” I just be, really wanting to know. I just really want to ask. I just, it makes me upset. Because I have been on both sides and it don't feel good on Medicaid. And sometimes I could, I do can tell a difference. Like, I might be last. Like, more people have been, like if I been there sitting, and I'll go ask, you know, “When is my name being called? I was here about 30 minutes ago.” And this person, they tell me something or whatever. But I just be, I don't know.
The Limits of Insurance Coverage
Whatever the source of insurance, with expensive medical procedures out-of-pocket costs often add up quickly. Janet B., for example, lived on a fixed income and “literally cried” when she was told how much her co-payments would be. Managing medical bills can also be difficult. As Nikki put it, “you’re literally fighting for your life… To have to worry about insurance and bills, it’s crappy…Nobody wants that stress.” In some cases, even the most creative efforts to cope fail–and the only way to deal with accumulated medical expenses is to declare bankruptcy or take other drastic financial steps.
Nikki set up payment plans to deal with her accumulating bills.
Nikki set up payment plans to deal with her accumulating bills.
I think, I mean, insurance is insurance. No one likes that, right? You get all these bills coming in and people calling me, and I just kind of put my foot down and was like, "Well, you all get 20 bucks a month." And they said, "That's not enough." "Well, you can have nothing if you want." But—so, I set up payment plans, everybody was getting a set amount every month. It was just—and then they're fine. They really are. You know, the hospitals are fine with it. You know, I think the insurance kind of usually would push a little bit. But, you know, you have so many people and so many appointments, and so many doctors, and so many bills that it was just like, OK. I made myself a chart. I said, "Everybody is getting this amount whether you like it or not," like, "I'll start paying, but you're not getting the farm."
Even though Carrie had insurance, undergoing treatment led to bankruptcy.
Even though Carrie had insurance, undergoing treatment led to bankruptcy.
What was your insurance like and how has it been over the course of all these episodes?
Well, when I worked retail, it was a little less comprehensive. So, we basically were responsible for 20% because we were considered out-of-network, that was a lot. And also, it was, there was a recession, and there was, there was just a lot going on. And, you know, I was hourly, so then when I did take off for FMLA, my job was safe, but I had no income. And my husband's a private contractor, and again, it was a recession. And so, he was working in manufacturing and, and that wasn't going great. And, like I said, 20%, we were responsible for 20%. We did work with the hospital on their community care program and got some grants and some of those things were given. But in the end, we had to file bankruptcy, or we were going to lose our house. We had to coach our kids not to pick up the phone when the debt collectors were calling. It was, it was an eye-opening and humbling experience to go from a solidly middle-class family, and then just through the illness and the recession. And, it was kind of a perfect storm of things to go to where you're saying, “Don't pick up the phone, kids.” And, and looking at, at your balance sheet and going “The only way we can save our house is to file for bankruptcy.” And that's really hard. That's really hard to do when you've been brought up, you know, that you take care of yourself and you pay your bills and that's the right thing to do, so, it’s been, that was a really difficult part of the ride.
A Payment Patchwork
Many of the people we spoke with described cobbling together coverage and other sources of funding from a number of different sources to pay for the costs of their treatment. Maria H., for example, received some financial assistance from a hospital-based program. In other cases, people had additional coverage that supplemented their health insurance, helping with medical expenses that most insurance does not cover, such as co-pays and deductibles. Asante described having a “secondary insurance” policy from a well-known national company through her husband’s job. “That type of insurance definitely helps,” she said. After her grandmother was diagnosed with cancer, Linda decided to plan ahead just in case and purchased a “supplemental cancer policy.” After paying “$27 a month” for many years, the policy was now covering for many of her expenses, including the out-of-pocket costs of an expensive medication.
Precious has experience with several types of insurance and other sources of financial assistance.
Precious has experience with several types of insurance and other sources of financial assistance.
Well, I was eligible, I was on disability. It's just that how, at that time. I don't know if it's changed, but at that time, and because I was under 65, really, I was 62 when I retired. And, and how the rule worked for Medicare is that you have to be on it for two years before you, on disability two years before Medicare kicks in. And so that’s, you know if I was over 65, it wouldn't have been an issue. But I was under that, and so, I had to wait until, but you know. But thank God, I had other insurance to take the place. Because IBRANCE alone is thousands of dollars. And so, I applied for the subsidies through the insurance-drug companies for all my medications and whatnot. So yes, that was the issue of how the rules for Medicare and disability worked.
Other Expenses
Medical expenses are not the only source of financial stress people we spoke with described. The illness itself and the debilitating side effects of treatment often made it hard for people to continue to work and sometimes cut into the work-time and earnings of their spouses or significant others. This reduced their household incomes–but, as many respondents explained, “bills don’t stop just because you get cancer.”
Victoria's family faced financial hardship when she gets sick.
Victoria's family faced financial hardship when she gets sick.
I definitely stopped working. So, when I stopped working, I also had in my mind, and I said, "Well if I leave work, how are we going to cover everything? Things for the house, the bills, everything, everything that we will need." My husband also stopped working some days to be there with me. Also, he worked fewer hours because he was with me more. So, well, then came everything. Everything, everything on my mind. You are with him, you are going into treatment, or that it will take a lot of time, you are not going to work. My husband also will be there for my care. So, well, yes, he came a lot on my mind, and I said, "Well, where are we going to get so much money to cover everything?"
Yo definitivamente paré de trabajar, paré de trabajar. Entonces, usando yo dejé de trabajar, también vino en mi mente y dije, bueno, si yo dejo de trabajar, ¿cómo 616vamos a cubrir todo, las cosas de la casa, los pagos de "billes--" todo, todo lo que hace falta? Mi sposo también dejó de trabajar unos días para estar ahí conmigo. También dejó de trabajar menos horas porque, pues, ya él estuvo más conmigo. Entonces, pues, viene todo, todo, todo en la cabeza. Estás con el--vas a entrar a un tratamiento que va a tardar mucho tiempo, no vas a trabajar. Mi esposo también va a estar ahí al cuidado mío. Entonces, pues, sí, vino mucho en mi mente y dije, bueno, ¿de dónde vamos a sacar tanto—este--dinero para poder cubrir todo?
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
My concern at that point was, all right, we're running on one income. Between the gas and the car and having to, the alternate, like, all of these things play a part. And these are things that are also weighing on me. And it might seem small, but these are all things that-, that play a part. The kids finish school at a certain, oh, and on Wednesdays, at a certain time, and, you know, so, I can't have treatments those days. But the doctor's not in this day and this day. All of these things weigh on the patient.
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There were some times where I-, you know, [LOCATION], there is no parking, especially where the major hospitals are. So, there was days where my husband and I were paying for parking. That's $20, $25 sometimes, and that's just for a few hours, and even $15 for, because radiation, it goes very quickly.
Some people were able to get help for ongoing living expenses. Kerry’s partner supported her financially, telling her “just focus on being healthy and getting through this.” Zulma described receiving county-based aid that “sometimes helped me to pay for the gas in my car, when I had to go to the doctor…and on occasion they paid my rent.” Through a patient advocate at her hospital, Janet B. was able to apply for help from programs in her community “that help the local people here if they money for food or whatever.” For some of the people we spoke with, when combined with medical expenses, these ongoing financial obligations could result in severe hardship.
Kawanna worked throughout her illness to stay afloat financially.
Kawanna worked throughout her illness to stay afloat financially.
I was like, well, I need insurance. So I've got to keep working. Even if it's four hours, I've got to keep working, so I could pay for the insurance. I didn't know that I had other options. It pretty much was vaguely, paid family leave, 12 weeks. But then what? Because that time just goes by, and at this point, I was in the midst of the first most draining chemo. But I would just have to push myself for at least four hours. And I didn't know the HR person well enough to advocate for myself on that end. I need another choice. I wanted something that was going to say, “OK, you, you can stop.” Or I wanted someone from the beginning, probably, to advise me, “Listen, it's probably in your better interests, because things are going to get harder, that you might want to consider ABC.” But I didn't know any better, so I just pushed myself as much and as far as I possibly could.
Because health insurance is so commonly tied to employment in the United States, for many people the need to keep working for money and the need to keep working for insurance coverage converge. For more about the experience of working while being treated for breast cancer, see our summary on Experiences with Work. While juggling work and illness, people we interviewed worried doing so might be bad for their health, or that the high amount insurance had to pay out for them might result in them getting fired or losing work contracts.
Ronnie says her work arrangements felt increasingly fragile.
Ronnie says her work arrangements felt increasingly fragile.
I think risks are more for in future employment situations, ‘cause my mom was basically forced to retire early when like after she went through treatment. They didn’t want, they were afraid she was going to get it again, and treatment costs a lot of money, and so she was kind of forced to retire. It's not legal. But I mean, they didn't, I don't know exactly how it went down. But she, but they didn't want to run the risk of her getting it again, and her workplace having to pay for all of that again. And so, I think I was, I had concerns that were sort of similar. Would my workplace still want to keep me around? Would I have a job? And if I don't have a job, then I don't have insurance, and then if I get cancer again. Then like, I don't have a way to pay for it, and then I'm going to die.