'I Was Furious Then and I'm Furious Now': The Real Cost of Cancer Care

Liam Davenport


January 14, 2019

When Neil, a freelance medical journalist, received his sarcoma diagnosis at a large Boston teaching hospital, the oncologist recommended that he have three cycles of chemotherapy, interspersed with two cycles of radiotherapy, to be followed by surgery and three more cycles of chemotherapy.

As he started to understand what that would mean in terms of the time commitment, Neil started to calculate the impact on his ability to work. Initially, he had thought he would be able to work on the treatment days, "but I realized quickly that I couldn't."

"We live an hour outside of Boston, and it would take much of a day just to go into the city, park the car, go in for the radiation, wait around, speak to the doctor, do the exam, and then drive out again," he said.

Moreover, the regimen was "very heavy-duty," making it difficult to work reliably for his clients, even on nontreatment days.

And then, while Neil was navigating his way through the treatment regimen, the bills started arriving.

Even though he had employer-sponsored medical insurance that came with his wife's former job at a local school, costing them $1600 dollars a month in premiums, he faced huge out-of-pocket costs.

"Thankfully we have about $20,000 in savings, and we went through most of it that year," he said.

He explained that the treatment period ended up lasting a total of 9 months, because chemotherapy cycles four and five were separated by several months owing to a surgical-site infection that required him to be hospitalized for 2 weeks, and he was almost entirely unable to work during that period.

So how does he feel now, having been successfully treated for his cancer, about having to spend so much of his own money on his treatment?

"I was furious then, and I'm furious now, at how unjust it is," he said, adding, "I'm one of the lucky ones because I can afford to pay. I can afford these premiums, although I have to...work a lot harder to do it."

Those Aren't the Only Costs

The picture painted by Neil is hardly unusual.

At the American Society of Clinical Oncology (ASCO) 2018 Annual Meeting, Ryan David Nipp, MD, a gastrointestinal oncologist and health services researcher at Massachusetts General Hospital, Boston, Massachusetts, outlined the case of "Amy," a 59-year-old female attorney with two children in college who has microsatellite stable stage III colon cancer and has been recommended 6 months of adjuvant FOLFOX chemotherapy. He said that "she'll probably have issues with employment related to missed work, [as well as] potential disability issues."

She may also experience "job lock," in which people feel "locked" into a position at work because they receive their insurance through their employer, as well as personal issues, such as paying for her children's education, her mortgage or rent, and her basic living expenses.

Ellen Miller Sonet, MBA, JD, chief strategy and policy officer at CancerCare in New York, New York, who also spoke at the session, said that cancer patients may face costs related to lodging and transportation for treatment, as well as legal services related to housing.

She added, "One of the first things patients with cancer do when they get diagnosed is they start to eat healthy, and healthy food costs more."

When CancerCare surveyed more than 500 patients with cancer, they found that for people aged 25-64 years who were not on Medicare, the average out-of-pocket expenditure was $1114 a month.

"To put that into context, the IRS did a study at about the same time and determined that 47% of US households could not afford an unanticipated $400 expense," Sonet said. "So you can imagine what $1114 a month is doing to these families."

Financial Toxicity

This issue has become an area of concern in recent years, and the problems that patients with cancer face as a result of the cost of their treatment has been termed "financial toxicity."

Nipp said that because cancer drugs have become increasingly effective and tolerable, and therefore can be taken for longer periods, this also makes them more expensive.

More worryingly, Nipp said that cancer care costs have risen significantly in recent time, rising up to two to three times faster than other healthcare costs, "and with the increased availability and use of targeted therapies and immunotherapy, it's very likely that costs are going to continue increasing."

This, he said, could lead to even greater financial hardship among cancer patients.

Erin Aakhus, MD, MSHP, instructor in the Division of Hematology-Oncology, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, who did not take part in the session, agreed that the issue of financial toxicity is becoming more pressing.

"This is a topic that's been warming up in the oncology community for a while now, and in the United States, we've have a lot of interest in this from both the patient advocacy side and the pharma side for reimbursement of expensive new oncology drugs," she said. "This is a controversial topic. The costs of new treatments are going up at a very high rate...It's a marvelous time in oncology, but overall, the cost of caring for the population is getting really out of control."

The Impact of Financial Toxicity

All of this can take a huge toll on patients. A 2016 study by Kale and Carroll[1] of a 2011 Medical Expenditure Panel Survey data showed that the financial burden of cancer care is associated with worse quality of life and an increased risk for depressed mood for patients.[1]

In addition, having limited financial reserves is associated with increased pain, greater symptom burden, and worse quality of life,[2] and patients who file for bankruptcy were found in one study to have 79% increase in mortality risk over those who were not bankrupt.[3]

"There may be missed treatments or substandard approaches to treatment based on the financial stress that patients are experiencing, that maybe lead to worse survival," Aakhus explained.

And it does not end there. Kent and colleagues[4] showed in a study of almost 90,000 individuals from around 35,000 US households that cancer survivors who reported financial problems were more likely than other patients to delay or forgo needed care, including overall medical care, prescription medications, dental and eye care, and mental healthcare.

Patients experiencing financial burdens are also more likely than those without financial issues to skip medication doses, take less of a medication, delay a prescription fill, ask their physician for a lower-cost medication, buy prescription drugs from another country, and use alternative therapies.[5]

Another study, involving 1202 adult cancer survivors from the 2011 Medical Expenditure Panel Survey Experiences With Cancer questionnaire, revealed that 7% of survivors reported having to borrow money or go into debt because of their cancer.[6]

Furthermore, 2% filed for bankruptcy, 12% reported being unable to cover their share of medical costs, and around 10% said they had to make other financial sacrifices.

Sonet said that patients can feel "helpless and anxious" over their loss of income and their inability to meet their financial obligations.

She added that they experienced "distress from insurance coverage challenges. Anyone who has to deal with insurance companies knows what it's like. In fact, we found that patients say the most difficult care team member for them to access is their insurance case manager."

Sonet also said that one thing that comes up again and again with the social workers at CancerCare is that "people worrying about their financial obligations really don't have the opportunity to deal with the fact that they have cancer, to process the fact that they've been diagnosed with cancer and need to be treated."

Should Oncologists Worry About the Financial Impact on Patients?

That raises the thorny question of whether oncologists should discuss the potential costs of the care they are recommending to their patients.

Pointing to a ASCO guidance statement on the cost of cancer care,[7] Nipp urged the fostering of appropriate patient-clinician communication about the costs of cancer, and said that there are numerous guidelines that encourage such discussions.

Moreover, he said that discussions over the costs of cancer care have the potential to improve care delivery, and thus outcomes, through informed decision-making.

Oncologists themselves agree that they have a responsibility to consider the impact that treatment decisions have on a patient's well-being. A survey of more than 160 oncologists showed that 80% agreed that they should have cost discussions, and 66% think they should consider cost-effectiveness when making decisions.[8]

Such discussions may eventually become compulsory. Aakhus pointed to the Oncology Care Model, which is being developed by the Center for Medicare and Medicaid Innovation.

"One of the components of that program, which is based on some of this research that has come out in the past 5-10 years, is that reimbursement to the oncologists or oncology groups...will be dependent on a series of quality measures to ensure good care for the patient," she said. "And one of those measures in this experiment is a requirement to document a conversation between the oncologist and the patient about their out-of-pocket costs and the overall cost of care."

The model has been running for 2 years and involves several hundred oncology groups across the United States, "so thousands of oncologists are doing this right now."

Sonet believes that patients with cancer "deserve to know the major costs of their treatment before they start...Sometimes that may seem overwhelming, because the financial spreadsheets can be very long and complex to figure this out."

"You wouldn't make a major purchase without knowing what it costs, and we owe patients that," she said.

Neil agreed, saying, "No one ever said to me directly how much it was going to cost. No one."

Do Patients Always Want to Know the Costs?

A survey of more than 250 patients showed that 68% said they would prefer to know the out-of-pocket costs of their treatment, and 59% would like their doctor to talk about that with them. Moreover, 76% of patients said they would be comfortable discussing costs with their doctor.[9]

However, Aakhus pointed out that there are many open questions about how the conversation should be delivered, including when, and whether the oncologist has the time to do it or is indeed the right person.

She highlighted an abstract that she presented at ASCO 2017, which revealed "a lot of heterogeneity in the opinions of both patients and providers as to whether it's the right place to discuss when at the bedside, when patients are making life-and-death decisions."

She continued, "There's also a sensitive relationship between the patient and the physician. Physicians are getting reimbursed for the treatment in some ways, and so there's a concern about the direct or indirect financial conflicts of interest between the oncologist and the patient."

"So bringing costs into the conversation can be very delicate, and has some ethical complexities," she concluded.

This opinion was reinforced by Nipp, who said that there are several potential barriers to cost discussions, including a lack of knowledge about costs; discussions being time-consuming; practical and ethical concerns; and concerns that cost information may encourage patients to refuse treatment, or that the discussion may jeopardize the patient-clinician relationship.

The result is that only 54% of clinicians said in a survey that they have a sense of their patient's financial well-being, whereas only 42% said that they discuss cancer costs with their patients and just 37% were comfortable having such discussions.[8]

Nipp said that patient barriers to cost discussions included concerns about the appropriateness of the discussion, embarrassment over raising cost concerns, a desire to respect their clinician's time, having greater priorities for the clinic visit, and being unsure whether the clinician could address their concerns.

A survey of 300 patients revealed that around 25% of patients felt their doctor shouldn't have to worry about their finances, and about 35% said that they wanted the best possible care, regardless of costs.[10]

Should Oncologists be Trained to Discuss Financial Concerns?

To help oncologists better handle cost discussions with patients, Sonet pointed to the 11-item Comprehensive Score for Financial Toxicity as a helpful tool, as well as the Cancer Self-Administered Questionnaire, which contains items measuring financial burden, and the Personal Financial Wellness Scale, which is used by financial educators and researchers.

"But, frankly, you can also just ask a patient. You know: How are you feeling about this? Are you able to pay your expenses? Are you suffering with financial hardship?" she stated.

Aakhus added, "There are some really important conversations that we're already not doing a great job at completing, and the cost conversation is unfortunately prioritized lower on the list."

Does the Oncologist Even Know How Much Treatments Cost?

Neil does not think so. When he was being treated at Massachusetts General Hospital, he said that it was a case of, "This is the course that we recommend, this is what we're going to do."

The first time he had any idea of how much his cancer treatment would cost him was when the bills started arriving in the mail.

"In the bills, they will tell you what your portion of it is, and your portion of it might be 10%, it might be 20%, depending on your insurance," Neil said. "Or if you don't have insurance, you might be stuck with the whole thing."

Aakhus said that is because rather than a set series of fixed costs, there are a series of individually negotiated prices, meaning that it can be hard to estimate direct treatment costs, let alone the indirect costs patients will face.

"Many hospitals, groups, and individual physician practices are negotiating the prices of the drugs themselves, and that's not a transparent process," she said. "So if you don't have transparency in the market overall, how can you have transparency at the bedside?"

She said that some startup companies are trying to create apps and online tools to help patients find out how much their treatment will cost. "But they don't have access to the information about what the oncology practices themselves are paying, and individual insurance programs have their independent reimbursement negotiations, so it's almost impossible to give accurate estimates."

Should Oncologists Pass the Finance Talk on to Someone Else?

Aakhus believes that it would be better if oncologists handed over discussions of the cost of treatment to another professional.

"I have to say that it is my personal feeling that a third party would be an optimal situation," she said—"that you would have somebody who is an expert in the financial implications of cancer treatment but is an advocate specifically for their patients."

To achieve that, Aakhus said that in an ideal world, this third party would not have any personal financial conflicts of interest or "skin in the game in terms of what the choices are for the patient in terms of financial outcomes."

Positing that a nonprofit organization would perhaps be best placed to offer such a service, she conceded that "in practicality, that's an enormous resource that is not likely to manifest magically out of thin air."

Aakhus has nevertheless found that the practices most adept and comfortable at informing patients about their out-of-pocket costs are those that have assigned the role to a nurse or financial counselor who meets that patient outside of the patient-clinician visit.

Should Oncologists Consider Cheaper Options?

If third-party financial navigators are to assess a patient's cancer care costs, it may be that they identify a cheaper treatment option that could offer similar outcomes but at less of a financial burden to the patient.

The question then becomes: How would the oncologist feel about having that cheaper option suggested to them? That scenario was posed during the session at ASCO by Lindsay Griffin, a financial navigator and social worker from Annapolis, Maryland.

Griffin asked, "Is it appropriate for me to talk with the oncologist about a treatment I might think is more cost effective to the patient, even though it might be a little different modality than you're used to?"

"Is that an appropriate conversation for me to have with you, since I don't have that medical background, but I have that financial background?" she continued.

Nipp replied, "I don't know that you could convince me necessarily...I do think it's a very touchy situation, especially as a clinician, being trained only to do the best thing for your patient always."

However, Nipp went on to note that even that notion is "controversial," because it is typically taken to mean "the best thing by clinical outcome, but that is another question about [the] implications for the costs."

For Neil, the answer was much simpler. He believes that the oncologist should not say no to a cheaper option, "because it's not his choice."

"I understand the physician viewpoint is that you think you're delivering substandard care, but patients may not have the choice and, ultimately, it is the patient's choice," he stated.

Sonet summarized it another way: "Patients may be willing to sacrifice five points on a survival curve in order not to spend their child's college fund. But if these conversations don't happen, patients don't get an opportunity to make those choices for themselves."

Aakhus believes that decisions between cancer treatments based on cost are made "not infrequently," adding, "I have spoken to many patients and doctors who have been forced into that situation where opting for a more cost-effective treatment was necessary."

She gave the example of prostate cancer, in which there are a number of very expensive oral treatments for aggressive cancer. Patients can end up taking them for many years, resulting in elderly patients on Medicare programs potentially paying 20% out-of-pocket for every treatment.

Instead, "patients are very frequently opting for the more affordable but possibly more toxic first-line treatment for their prostate cancer because of their out-of-pocket cost concerns," Aakhus said.

She added, "There is just enormous complexity and awkwardness, and it feels like a very gray area from an ethical standpoint when the individuals at the bedside are making these decisions."

Healthcare Is Not a Commodity

Given all of those issues, is there anything that Neil would like to change about the healthcare system in the United States?

"Everything," he said. "For one thing, I think the entire US system of employer-based insurance is wrong. We treated it as a commodity; it's not a commodity, it's a basic human right, which the rest of the civilized world has come to understand."

"We don't get that. We make these extravagant claims; politicians on both sides, but particularly Republicans, like to crow that we have the greatest health systems in the world, and we do not," he continued.

"We have spent far more on our care than, let's say, in Canada or elsewhere, and our outcomes are no better and sometimes are worse than those in other countries."

Ryan Nipp has disclosed no relevant financial relationships. Ellen Sonet has disclosed the following relevant financial relationships: Stock and other ownership Interests: Merck/Schering-Plough; Pfizer. Honoraria: Prophet Branding. Travel, accommodations, and expenses: Merck/Schering Plough; Prophet Branding.


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