Download Financial Toxicity: A Growing Concern Among Cancer

ECONOMIC EVALUATION
Financial Toxicity: A Growing Concern Among Cancer
Patients in the United States
Jean A. McDougall PhD, Scott D. Ramsey, MD, PhD, Hutchinson Institute for Cancer Outcomes Research, Fred Hutchinson
Cancer Research Center, Seattle, WA, USA, and Ya-Chen Tina Shih, PhD, Department of Medicine, University of Chicago,
Chicago, IL, USA
T
he cost of cancer care is growing faster than other sectors in health in the
United States, and this is creating unintended financial consequences for
cancer patients, the scope and scale of which are only beginning to be appreciated.
Financial toxicity, a term recently emergent from the oncology literature, refers
to the unintended financial consequences of patients embracing expensive
treatments [1]. An estimated 1,660,290 new cases of cancer were diagnosed in
2013 and there are an estimated 13,027,914 people currently living with cancer
in the United States [2]. Recent studies suggest that high proportions of these
individuals are experiencing severe financial distress and even bankruptcy in the
months and years following diagnosis. In addition, evidence is accumulating that
patients are forgoing treatments due to costs, with potentially life threatening
consequences. Below, we review the conceptual issues involved, and current
research on the topic of financial toxicity in cancer, followed by discussions of
strategies and policy initiatives to address the problem.
Individuals diagnosed with cancer face potential financial stresses on three
fronts: 1) out-of-pocket expenditures for medical care (copays, coinsurance,
deductibles, and premium) and related non-medical expenses (e.g., costs of
transportation and parking); 2) loss of earnings for the affected individual; and
3) potential loss of household income of other family members due to caregiving
needs. Compared to other health conditions, cancer is relatively unique in that
the treatments for the disease, such as chemotherapy or radiation therapy, often
make patients too sick to work or care for themselves for weeks or months on
end. Even after succeeding the initial treatment, survivors often face long-term
health consequences resulting from their disease or therapy and may require
ongoing surveillance for disease recurrence and second cancers. Lingering
effects, such as “chemo brain” and lymphedema, can leave patients at less
than full function for months or years following treatment. Multiple studies
demonstrate that family caregiving needs for cancer patients can be highly
burdensome, necessitating some to reduce time at work to help their loved one.
Many cancer patients and their families are thus forced to deal simultaneously
with illness and financial distress for a sustained period of time. As individuals
incur expenses and lose wages, even those with generous insurance coverage
are likely to exhaust savings and accumulate debt.
Estimates from the 2001 Medical Expenditure Panel Survey reported the average
annual mean expense per person with cancer to be $36,318 [3]. Approximately
4.6% of the total is paid directly out-of pocket by patients [3]. The average does
not reflect the variability in benefit designs across plans, or the relative impact
on patients of varying socioeconomic status. Studies that have surveyed cancer
patients about financial matters find that up to 40% experience severe financial
distress, defined variably but usually including items such as remortgaging one’s
house or emptying all savings [4-6]. The long-term consequences of financial
distress for patients’ health and economic well-being are unknown.
Financial considerations related to the rising cost of cancer care also have
direct impacts on patient’s choice of treatment and adherence to therapy plans.
Numerous studies have demonstrated that, as out-of-pocket costs increase,
fewer patients initiate treatment and those who do are more likely to discontinue
early [7-9]. Sub-optimal adherence to treatment is directly associated with
poorer disease outcomes, and potentially higher long-term costs due to
recurrence and complications. To the extent that the financial burden of cancer is
greater for those with lower incomes, it directly contributes to health disparities,
as poorer patients are unable to access treatment due to financial barriers.
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Cancer patients often have to take time away from work to attend medical
appointments and recover from treatment. Forty to 85% of cancer patients stop
working at some point during treatment [10]. Ongoing health problems and
missed opportunities for advancement contribute to the finding that, on average,
individual earnings of cancer survivors tend to fall during the 5-year period after
diagnosis [11]. For younger cancer patients, stopping working or reducing hours
can also result in disruptions or loss of insurance coverage. The financial burden
of cancer is experienced not only by patients, but also by families and friends.
Family members often act as informal caregivers and may also face loss of
income. In a study designed to estimate the burden among partner caregivers of
patients diagnosed with localized prostate cancer the work hours of caregivers
in the year post diagnosis declined significantly, resulting in an average loss of
US$6063 (range US$571-US$47,105, in 2009 dollars) [12].
One of the most extreme manifestations of the financial burden of cancer is
insurmountable debt leading to personal bankruptcy. Our group recently
published a population-based analysis of the risk of bankruptcy and found
that while just over 2% of patients diagnosed with cancer in the United States
between 1995 and 2009 filed for bankruptcy in the 5-year post-diagnosis period,
the risk is about 2.7-times greater than sociodemographically-matched people
without cancer [13]. Younger cancer patients were at a significantly higher risk of
filing for bankruptcy than patients diagnosed over the age of 65, suggesting that
insurance, and specifically Medicare, may partly mitigate the risk of bankruptcy.
Several strategies have been proposed to reduce the financial burden of cancer
for patients and their families. In 2010, a new Patients’ Bill of Rights took shape
as part of the Affordable Care Act (ACA). While not all of the provisions have
been fully implemented, the new legislation removes barriers to obtaining
insurance coverage and annual and lifetime dollar limits to be paid by insurance.
It also makes it illegal to deny insurance to people with pre-existing conditions.
Another ACA provision that is especially beneficial for young cancer patients
is the extension of dependent coverage to the age of 26. Increasing access to
insurance should reduce the risk of financial devastation for individuals who
previously would have been uninsured. These patient protections should lessen
the financial burden of patients who previously would have reached the limit of
their insurance benefits and those who would have been unable to get new or
more coverage. In addition, by requiring insurance to cover screening, the cancer
stage distribution for sites with effective screening technologies such as breast,
cervical, colorectal, and most recently lung, should shift to earlier stages, which
tend to be less expensive to treat than cancers diagnosed at more advanced
stages.
Financial planning alongside the development of a treatment plan may also
reduce the risk that unexpected expenses overburden cancer patients and their
families. Full disclosure, as recommended in the recently published IOM Quality
of Cancer Care report [14], that includes the costs and benefits of all available
treatment options can potentially make cancer care more affordable to patients
and their families. For this to occur, however, the costs of treatment and especially
the expected out-of-pocket expenses must be readily available to patients and
providers. Access to social workers, patient navigators, and financial counselors
to guide financial planning and identify community resources that may offer
assistance to cancer patients has shown to be effective at reducing treatment
delays and discontinuation [15-17]. Moreover, the financial toxicity of treatments
should become as commonly discussed as treatment side effects and efficacy.
Most importantly, the discussion must include the cost of all available treatment
options that deliver similar overall benefit so that patients can reach informed
decision making by incorporating their own value judgment. The quality of life
of cancer survivors depends not only on their physical health but also on their
economic and emotional well-being.
In summary, cancer poses both a health and a financial threat to patients and
their families. Unintended consequences of the financial toxicity of cancer range
from reduced spending on other items to medical debt leading to bankruptcy; at
every stage suboptimal adherence and early discontinuation of cancer therapy
may contribute to cancer related morbidity and mortality. More studies that
estimate the cost attributes of cancer care and the associated cost drivers as
well as sources of variations are needed to reduce the financial toxicity of cancer.
7. Dusetzina SB, Winn AN, Abel GA, et al. Cost sharing and adherence to tyrosine kinase
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9. Hershman DL, Kushi LH, Shao T, et al. Early discontinuation and nonadherence to
adjuvant hormonal therapy in a cohort of 8,769 early-stage breast cancer patients. J Clin
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12. Li C, Zeliadt SB, Hall IJ, et al. Burden among partner caregivers of patients diagnosed
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