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Healthy Skepticism Library item: 20585

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.


Publication type: Journal Article

Ubel PA, Abernethy AP, Zafar SY
Full Disclosure - Out-of-Pocket Costs as Side Effects
NEJM 2013 Oct 17; 369:


Few physicians would prescribe treatments to their patients without
first discussing important side effects. When a chemotherapy regimen
prolongs survival, for example, but also causes serious side effects
such as immunosuppression or hair loss, physicians are typically
thorough about informing patients about those effects, allowing them to
decide whether the benefits outweigh the risks. Nevertheless, many
patients in the United States experience substantial harm from medical
interventions whose risks have not been fully discussed. The undisclosed
toxicity? High cost, which can cause considerable financial strain.

Since health care providers don’t often discuss potential costs before
ordering diagnostic tests or making treatment decisions, patients may
unknowingly face daunting and potentially avoidable health care bills.
Because treatments can be “financially toxic,”1 imposing out-of-pocket
costs that may impair patients’ well-being, we contend that physicians
need to disclose the financial consequences of treatment alternatives
just as they inform patients about treatments’ side effects. Health care
costs have risen faster than the Consumer Price Index for most of the
past 40 years. This growth in expenditures has increasingly placed a
direct burden on patients, either because they are uninsured and must
pay out of pocket for all their care or because insurance plans shift a
portion of the costs back to patients through deductibles, copayments,
and coinsurance. The current reality is that it is very difficult, and
often impossible, for the clinician to know the actual out-of-pocket
costs for each patient, since costs vary by intervention, insurer,
location of care, choice of pharmacy or radiology service, and so on;
nonetheless, some general information is known, and solutions that
provide patient-level details are in development.

Consider a Medicare patient with metastatic colorectal cancer. Commonly,
a component of first-line therapy for this disease is bevacizumab. The
addition of bevacizumab to chemotherapy extends life by an average of
approximately 5 months over chemotherapy alone. The drug is fairly well
tolerated, but among other risks, patients receiving bevacizumab have a
2% increase in the risk of severe cardiovascular toxic effects. Over the
course of a median of 10 months of therapy, bevacizumab costs $44,000.1
A patient with Medicare coverage alone would be responsible for paying
20% of that cost, or $8,800, out of pocket, and that price tag doesn’t
include payments for other chemotherapy, doctor’s fees, supportive
medications, or diagnostic tests. Most physicians insist on discussing
the 2% risk of adverse cardiovascular effects associated with
bevacizumab, but few would mention the drug’s potential financial toxicity.

This example is not isolated, and the consequences for patients are
grim. The problem is perhaps starkest in cancer care, but it applies to
all complex illness. The Center for American Progress has estimated that
in Massachusetts, out-of-pocket costs for breast-cancer treatment are as
high as $55,250 for women with high-deductible insurance plans; the
out-of-pocket costs of managing uncomplicated diabetes amount to more
than $4,000 per year; and out-of-pocket costs can approach $40,000 per
year for a patient with a myocardial infarction requiring
hospitalization.2 The Centers for Disease Control and Prevention
estimates that, owing in part to such high out-of-pocket costs, in 2011
about a third of U.S. families were either struggling to pay medical
bills or defaulting on their payments (see graphsFinancial Burden of
Medical Care.).3

This health care–related financial burden can cause substantial
distress, forcing people to cut corners in ways that may affect their
health and well-being. In our research, we discovered that many insured
patients burdened by high out-of-pocket costs from cancer treatment
reduce their spending on food and clothing to make ends meet or reduce
the frequency with which they take prescribed medications.4

Whether because of insufficient training or time, many physicians don’t
include information about the cost of care in the decision-making
process.5 But discussing costs is a crucial component of clinical
decision making. First, discussing out-of-pocket costs enables patients
to choose lower-cost treatments when there are viable alternatives.
Patients experience unnecessary financial distress when physicians do
not inform them of alternative treatments that are less expensive but
equally or nearly as effective. We discovered this phenomenon when
interviewing a convenience sample of breast-cancer survivors who had
participated in a national study of financial burden. Many women
reported discussing treatment-related costs with their physicians only
after they had begun to experience financial distress. One woman
reported that only after she told her clinician “I am not taking this if
it is going to be $500 a month” did the clinician inform her that “We
can put you on something [less expensive] which is just as effective.”

Second, such discussions could assist patients who are willing to trade
off some chance of medical benefit for less financial distress.
Admittedly, the trade-off between cost and potential benefit is complex
and ethically charged. Yet when costs are not included in decision
making, patients are deprived of the option, and patient engagement is
harmed. Presenting this trade-off to patients makes clinical sense if we
think of financial costs as treatment side effects.

Third, discussing out-of-pocket costs could benefit patients by enabling
them to seek financial assistance early enough in their care to avoid
financial distress. One of the patients we interviewed explained, “My
husband died and we were in debt. I was sick, he was sick. I lost my
house . . . . And I told [my doctor] that I could not afford to take the
Femara. She said, `Well, you can apply for help’ . . . and I got help!”
One has to wonder whether an earlier discussion of out-of-pocket costs
might have prevented the patient from losing her home.

Fourth, a growing body of evidence suggests that including consideration
of costs in clinical decision making might reduce costs for patients and
society in the long term.

Although we believe that physicians should discuss out-of-pocket costs
with their patients, we recognize that such discussions will not always
be easy. As previously acknowledged, it is often difficult to determine
a patient’s out-of-pocket costs for any given intervention. Efforts are
under way to address this informational barrier: insurance companies are
developing technologies to better estimate patients’ costs, and several
states have passed price-transparency legislation. But these efforts are
imperfect and incomplete, so for now, physicians and patients will often
have a difficult time estimating cost differentials between viable
treatment options. In addition, patients and physicians face social
barriers to discussing costs of care. No doubt, many doctors and
patients find discussions of money uncomfortable; they have not been
coached in ways of having the conversation. Patients worry that asking
about costs will put them at odds with their doctors or result in subpar
treatment. And some physicians believe that their duty is to provide the
best medical care regardless of cost.

We believe that given the distress created by out-of-pocket costs, it is
well within physicians’ traditional duties to discuss such matters with
our patients. Admittedly, out-of-pocket costs are difficult to predict,
but so are many medical outcomes that are nevertheless included in
clinical discussions. Policymakers need to continue the push for greater
transparency in medical costs, especially those borne by patients.
Health care stakeholders should advocate for high-value care that
reduces cost while improving outcomes. But that change will not occur
overnight, and in the meantime, patients will continue to suffer from
treatment-related financial burden. Physicians should discuss what is
known about these costs with our patients, so that the personal
financial impact of medical care is incorporated into the selection of
the best care for any given patient, in the same way that any other
potential toxic effect is considered. We can no longer afford to divorce
costs from our discussion of patients’ treatment alternatives.


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