‘I don’t want to bankrupt my family’: Addressing rising costs of breast cancer care
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Healio spoke with Fumiko Chino, MD, radiation oncologist at Memorial Sloan Kettering Cancer Center and winner of the Healio Patient Voice award, about the cost of cancer care and how it impacts treatment.
Specifically, Chino highlighted how rising costs of care affect outcome among patients with metastatic and HER2-positive disease. She also highlighted many different places where costs can be a barrier to care — everything from drug cost to parking fees.
Healio: How does cost impact the treatment and outcomes among patients with metastatic breast cancer?
Chino: The vast majority of the research we have in financial toxicity — or how cost can be a barrier in optimal cancer care — is in people with breast cancer. The community itself is very engaged, which is fantastic. They’re really willing to put up with a lot of survey questions from investigators, so, thankfully, we have a lot of fairly high-quality data in terms of how costs are affecting people with metastatic breast cancer. We know that affordability is a huge issue — patients can’t necessarily afford their medications, sometimes can’t afford to go to the centers that may be able to provide them with the best care, and then sometimes don’t have the financial resources to go to a facility that may have a clinical trial that they may be a good candidate for.
We know costs impact access, meaning not just filling a prescription but also not getting the best care at the best facility for you. Sometimes it can actually be a barrier in continuing treatment at the facility where you previously received care — for example, for people who were previously insured through their employer who then maybe switch over to Medicare or even Medicaid if they’re disabled. Sometimes those changes in insurance can mean the people who know them best — the care providers who have been with them sometimes even for a decade — may now be out of network. This is a specific concern for the community of metastatic breast cancer because the treatment timeline is blessedly longer than some metastatic cancers. You end up with this push-pull situation where it’s kind of a blessing and a curse where you have patients who are living with metastatic diseases for longer and longer, but then these access and affordability issues become the larger barrier given need for ongoing treatment.
A lot of the community is still trying to work, still trying to maintain their employer-sponsored health insurance, and progressively getting more and more informed about health insurance design and advocacy issues. Some of the best advocacy for improving access at the health care policy level has come out of the METAvivor community, so I really respect the patients with metastatic breast cancer because they have really built a lot out of nothing in terms of galvanizing an engaged and active community online and within individual cities and states to make some positive change.
Even within the larger population with metastatic breast cancer online, there are still subpopulations — for example, those who are hormone positive, those who are HER2-positive — and then there are the communities around men with breast cancer or Black women with breast cancer. So, even among what is one community — metastatic breast cancer — there is still intersectionality because each population has its unique needs and its unique disparities. Most famously people don’t think of men with breast cancer. It’s a population that is disproportionately diagnosed at a later stage and may require more aggressive treatment, similar to Black patients with breast cancer in that there is additional hardship on [these] unique populations.
Healio: How does one’s HER2 status impact the cost of their overall care?
Chino: It’s not “one size fits all” — we’re really trying to tailor to “right-size” treatments, but in general, patients with HER2-positive breast cancers are going to receive more treatment. Essentially, just across the board, more. Once HER2 was identified as a target, we were able to develop treatments that specifically work toward combatting this more aggressive feature. HER2-targeted agents have been a game-changer in terms of outcomes for this population. You have these unique targeted agents, but they are more expensive and more intense, even for someone who has non-metastatic breast cancer who’s receiving curative treatment. They’re going to be receiving up to a year of treatment, which means— more costs, more engagement with health care systems, more visits, more labs, more symptoms from ongoing treatment more potential debility because everyone essentially gets chemotherapy with a HER2-based therapy, whereas other people with early-stage breast cancer could potentially avoid it if their oncotype score is low enough.
Some studies have been looking at whether instead of a standard year of HER2-based therapy in the adjuvant setting we can cut it down to 6 months. The data there can be interpreted many ways. If you have an expensive targeted agent, obviously we want to make sure we’re using it wisely because the concern always is that if the health care system at large is funneling a lot of money into one particular thing, maybe that means there is less money for other disease types or manifestations. Classically health care is considered a closed system in terms of health care costs ibut sadly, within the United States we are behaving as if that it is not a closed system, and we can just keep adding zeros, which is not necessarily a good thing because there’s only so much toothpaste in the tube, right? You squish it out over here and there’s going to be a dent on the other side. Ultimately, it’s leading to an incredible rise in health care costs for everyone.
Healio: How does the cost of treatment or interventions limit the scope of practice in metastatic breast cancer?
Chino: Our treatments should be cost-informed, not cost-dictated. That’s a fine balance in the United States because there’s not a single person here who wants to feel like their care was compromised from cost at the provider level, even though we know routinely that costs can compromise care. We are sort of blithely set people up for some very intense treatment plans without recognizing that each person is unique, and their resources are different, their capacity for out-of-pocket expenses are different, and their financial reserve is different. That is not currently an essential part of the algorithm when we consider the best and optimal care for each person.
I try to involve it when I talk with patients about, for example, radiation plans, because there is a range of potential options for people who will get benefit from radiation from 5 weeks of radiation, potentially all the way down to five treatments of radiation. And it’s obviously a very different plan between five and 25 treatments. That itself is sometimes very hard to explain. I try to ask a little bit more, sometimes detailed personal questions about patients, like, “who's in the home with them? Who’s there to help? How much do they work? Where do they work? What type of work is it?” Sometimes I get a little bit of pushback from people who are like, “why do you really need to know this?” I will say, “There are potential risks and benefits of every treatment paradigm. I'm leaning more toward X for you and this information can help me give you the best treatment options.” But the most important part of the care team member, in terms of decision making for patient-centered decisions, is the patient.
A lot of the times, we're not necessarily talking about every single option with patients. Just because there's sort of a standard algorithm, and it doesn't necessarily benefit to think about all of the leftfield concerns. For certain patients it would behoove us to really consider those. For some people, it's not going to matter — they're not going to have problems affording their care so it would not make a difference. But for people who are going to stop showing up for their treatment, or those who are going to lose their jobs related to too much time off of work and potentially then lose their health insurance, or those who are going to end up unhoused from the cost of their treatment — you know, it should matter. Especially if there is another option that could take less time or be less intense.
I explain this all the time — this treatment, which is very promising, has 6 years of follow up, while this treatment has 30 years of follow up, and I don't think it's going to be worse between the 6 and the 30 years of follow up. But I don't know, because I'm limited by the fact that modern treatments are only done in the modern era, and we don't have that long-term follow up. For some people, that's enough and for others, they're like, “No, if you're telling me that there's a question that this could be worse, I want the thing that is longer follow up, because that's where my priorities lie.” Again, it's this idea that cancer treatment is not one size fits all. Some patients are only focused on disease outcomes, and that's absolutely their priority. Some people are much more interested in “How do I get the right balance?” Other people say, “I just don't want to bankrupt my family.” I can't tell you how many times I've heard that, which is horrifying. Patients understand that there can be potentially long, long implications of the cost of their care.
Healio: Why would breast cancer care costs be higher among younger women compared with older women in the U.S.? How can this be combatted?
Chino: A number of different things factor into that. One is the stage in life that someone is in who's younger vs. older. Younger people are less likely to have financial reserves, they're more likely to be at an hourly vs. a salary wage, they're more likely to be in the middle of education or career attainment. When you add the additional burden of an intense cancer treatment and the costs associated with it, it can really just fundamentally derail someone's life. That can have lasting implications, even if they're best-case scenario and you get them through an intense treatment and they’ve made it to long-term survivorship. We also tend to treat younger people more intensely — more intense chemotherapy, more aggressive surgeries — because they often have more aggressive disease. There's a biological part, there's a treatment component, and then there's the social aspects where you have, again, potentially a mid-formed career, education plans that may or may not be stymied from a cancer diagnosis, the employer-based health insurance vs. Medicare, which may have some advantages for cancer treatment. And then you have this sandwich generation, where someone who's a younger person may be caring for young kids and may be still contributing to their parents. They have may have caregiver needs on both sides, their parents and also their kids. So, it can be very, very challenging for young people to go through cancer diagnosis.
Combating it is really thinking about how do we protect the most vulnerable of us? How do we think about preserving a work capacity for patients, if that's what they're interested in doing? How do we give them the best advice in terms of, for example, the insurance that they should acquire? Usually even for employer-sponsored health insurance, there are different options, and maybe we can give people better financial counseling for that. How do we try to figure out some really simple things, like“Could I be more efficient in my clinic for people so that I don't keep them waiting for 3 hours for a 30-minute follow up visit for me?” Simple things like telehealth can be implemented very easily for a younger population, just because of the technology savviness of it. Same thing with electronic patient reported outcomes. Can we use more advanced technologies in this population to try to prevent, for example, emergency room visits or hospitalizations, manage symptoms better, and keep people sort of in optimal shape, not just so they can work, but also so they can thrive? Ideally, you want people to continue to move forward in their life instead of just being in the cancer black hole that you fall into.
Healio: How can understanding cost of treatment help clinicians when providing care to patients with metastatic breast cancer?
Chino: There's a couple of different ways when we think about costs and affordability where clinicians should be better informed. One of them is in terms of health care system costs, and the overall burden of treatments. We should all be better informed. Price transparency can help with understanding that there's huge variability in prices for breast cancer. We just had a study published looking at the published negotiated prices for breast cancer and just there was extreme variation — a thousandfold variation in the charge price for the exact same thing, both between cancer centers, but also within cancer centers based on the different insurances. Then there's the individual, patient out-of-pocket expenses that I think providers could be better informed about. Again, sometimes that's just encouraging the questions by opening up a dialogue, “Are you having any problems affording your care?” My own researchers show that we're doing a bad job in terms of actually getting people access — plugged into the financial assistance programs that they qualify for already. We're missing the fact that they're even having a need until maybe it’s too late, and it's become truly toxic.
Understanding, again, there is a big picture, but there is also the small picture of an individual struggling to afford care. Billions of dollars all the way to the $20 copay can make a difference, and that includes things outside of what we standardly think of as the cost of care. It's really insane that we need to talk about parking as a barrier, but it is. When I ask patients about their social history, I want to know how far away they live from the facility. I want to know how they get there, if they drive themselves. I want to know all of these extra aspects of their lives because it helps me understand if someone's coming from Staten Island, and I treat people in New Jersey, are you on the closer side of Staten Island to New York, or on the closer side to New Jersey? That'll give me an idea of how much of a barrier it is to get there. So again, it's weirdly, deeply personal, but I swear it's for a good purpose.
Healio: How is the current balance between treatment options, effectiveness and cost?
Chino: Whenever we consider the cost effectiveness of a treatment, what we're typically calculating is a quality-adjusted life year. Within the United States, we have different potential thresholds for which treatments are “worth it.” So, a standard threshold in the United States might be $150,000, for a quality-adjusted life year. Those calculations are purposeful. We should try to be using high-value treatments.
Compare that to cost-effectiveness analysis in Europe, where the standard quality-adjusted life year threshold might be $50,000. Is an American life worth three times the cost of a European life? I don't think so. It's just that because of nationalized health care and having to really come to grips with there's only so much toothpaste in the tube — that if you squeeze it out one way it's going to come out the other. So, I understand those calculations, but what's not captured in cost-effectiveness analysis is that quality-adjusted life years can discriminate against people who have disabilities or older people. You still want to provide them the optimal care, the best value care, and it's very hard for people who are trying to make some of these decisions in terms of policy or coverage to understand that. If you place limits on who can receive what, you are leaving some patients out. So you are potentially not providing the optimal treatment to some more vulnerable patients. When I try to explain, for example, the role of prior authorization to my mentees, I say, “Well, you know, we hate it. But it's also for a purpose, which is to try to contain costs and to try to make sure that we're not using treatments that have really limited or unproven benefit.”
When we think about some of the revolutionary things that were presented at ASCO this year, we had DESTINY-04 showing that this HER2-based treatment could potentially prolong survival for people who may not have a lot of other options. It's phenomenal, and I think the benefit was 6.6 months for them for being on this treatment. But then the other hand of that is that this specialty HER2-based treatment is expensive. Individually, I want the very best care, despite cost, for every single person in front of me. But we have these rising health care system costs, which then put downward pressure on the care for essentially everyone except for the chosen few with the best of the best insurance. There are ways of combating this, in terms of price transparency, and price control. We have, essentially, the sky's the limit in terms of drug pricing for new pharmaceutical agents, and each year they just get more and more expensive in terms of the list price. So, being able to negotiate price or being able to limit price could potentially really help a lot of patients actually be able to afford the new amazing innovations that are presented on the plenary stage with a standing ovation at ASCO. That’s a balance of, essentially, trying to figure out how do we do that, while still fostering innovation.
Reference
- Mathew AT, et al. Ann Surg Oncol. 2021;doi: doi.org/10.1245/s10434-022-11349-y.
- Modi S, et al. Abstract LBA3. Presented at: ASCO Annual Meeting; June 3-7, 2022; Chicago.
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