The purpose of this module is to provide an overview of the rising costs of cancer and its treatment, outline the multifaceted aspects of cancer-related financial toxicities, and review nursing strategies to mitigate this undertreated and growing problem.
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Syllabus
Background
Beyond the sweeping life impacts imposed by a cancer diagnosis, cancer has become an equally financially catastrophic sentence for many patients. According to the Centers for Disease Control and Prevention (CDC), one in three Americans experience financial burden as a result of medical care, and this burden is even higher for patients with cancer (CDC, 2019a). A cancer diagnosis is often accompanied by higher out-of-pocket (OOP) expenses than other chronic illnesses, and those with cancer are at increased risk of experiencing financial difficulties than those without cancer (Guy et al., 2014). While major advancements in cancer diagnostics and treatments have led to significant improvements in patient outcomes and survival, the cost of therapy has sky-rocketed. Financial toxicity describes the detrimental impact of the high cost of medical care, coupled with the loss of income, due to cancer and its treatment (Katz, 2018). It encompasses the experience of not being able to afford the costs of care and the ramifications of these costs. The financial burden endured by patients and their families is associated with heightened psychosocial distress, poorer patient outcomes, and impaired quality of life (Zafar, 2016). While the relationship between financial toxicity and patient outcomes is only recently starting to be explored, both the American Society of Clinical Oncology (ASCO) and the National Academy of Medicine (NAM) recognize cost-of-care conversations as a critical aspect of the clinician-patient relationship and an essential component of high-quality cancer care. Assessing and managing financial toxicity has become an indispensable part of the cancer care continuum (Rosenberg, 2018).
Cancer Statistics
An estimated 1.8 million people in the US will be diagnosed with cancer in 2019 (Miller et al., 2019). Cancer is the second leading cause of death in the US, lagging behind only heart disease. It is the leading cause of death for those under 65 years of age. Nearly 40% of men and women in the US will be diagnosed with cancer at some point during their lifetime (Howlader et al., 2019). In 2019, cancer deaths are expected to total 606,880, and these deaths impose a significant economic burden on the US as a result of productivity losses from premature deaths (Islami et al., 2019). Despite these figures, the cancer survivorship population is growing, and according to the American Cancer Society (ACS, 2019), the cancer death rate in the US declined by more than 27% between 1991 and 2018. There are an estimated 16.9 million cancer survivors in the US, and this number is expected to rise to more than 22.1 million by 2030 and 26.1 million by 2040. Over the next decade, the number of people alive five or more years after diagnosis is projected to increase by 33% to 15.1 million (ACS, 2019).
Scope of the Problem
Financial toxicity of cancer care is a widespread and growing problem within the US, affecting at least 73% of patients with cancer (Gordon et al., 2017). According to the American Cancer Society Cancer Action Network (ACSCAN, 2017), even with health insurance, cancer patients consistently face unpredictable and unmanageable costs. These costs can be related to high co-insurance, high deductibles, needing to seek out-of-network care, or requiring a treatment modality that is not covered by their insurance plan. Newly diagnosed cancer patients often experience the highest initial OOP costs in the first two to three months following their initial diagnosis until they meet their applicable deductible and OOP maximums. However, the costs reaccumulate the following year if the cancer is still being treated. ACSCAN (2017) reviewed the costs for the three most common cancers, breast, lung, and colorectal cancer, and determined that the average patient will pay between $6,000 and $10,000 per year in OOP expenses when premiums, deductibles, co-pays, and co-insurance are factored in. If patients require out-of-network care or a treatment modality that is not covered by their insurance plan, the costs rise exponentially.
Young adult cancer patients experience financial toxicity at higher rates than older patients, as OOP expenditures and financial hardship associated with cancer are higher among survivors aged 18–64 years than they are among older survivors (National Cancer Institute [NCI], 2019). Nearly 15% of nonelderly patients with cancer spend at least 20% of their income on out-of-pocket expenses, and 50% of Medicare beneficiaries with cancer pay at least 10% of their income for cancer treatment and related OOP costs (Zafar, 2016).
Data from the Agency for Healthcare Research and Quality (AHRQ) 2011–2016 Medical Expenditure Panel Survey (MEPS) demonstrates that the average annual OOP spending per person is significantly higher among cancer survivors ($886–$1,113) than among persons without a cancer history ($606–$639). These higher OOP costs can be due to ongoing cancer therapy, surveillance measures, and care for any late or long-term effects of treatment (CDC, 2019b). Cancer survivors are more likely to report higher OOP medical expense burden (greater than 20% of annual family income) compared to persons without a cancer history (1.9% of annual family income). Survey data also revealed that 25.3% of cancer survivors reported material hardship (i.e., problems paying medical bills), and 34.3% reported psychological hardship (i.e., worry about medical bills). The percentage of survivors who reported experiencing financial hardship was highest for persons aged 40–49 years, and higher among minority racial and ethnic groups than among white patients (CDC, 2019b).
Ramsey et al. (2016) studied population-based data from the state of Washington and found that having a cancer diagnosis was associated with a 2.65-times greater likelihood of declaring personal bankruptcy. Moreover, according to a longitudinal study in which Gilligan and colleagues (2018), evaluated the impact of cancer upon a patient's net worth and debt in the US, an estimated 62% of cancer patients are in debt due to treatment, and 42% deplete their life savings within the first two years of cancer treatment; with an average loss of $92,098 (Gilligan et al., 2018).
Cost Factors of Cancer Care
Cancer is one of the costliest medical conditions to treat in the US, and the cost of cancer care is expected to reach almost $174 billion by 2020 (CDC, 2019a). Advancements in oncology treatments are accompanied by mounting costs to patients, the medical community, and society. The etiology of this high treatment price tag is multifactorial and can be attributed to rising pharmaceutical costs, particularly related to immunotherapy, targeted therapy, and oral anti-cancer treatments, including oral chemotherapy. The escalating cost is also driven by the current state of the US healthcare insurance market and dependence on cost-sharing by patients, higher premiums, deductibles, co-insurance, and co-payments. Health insurance is supposed to safeguard against unreasonably high and unexpected health care costs; however, this is often not the case. Oncologic care has shifted over the last decade, moving from community-based clinics to hospital-based outpatient care, where treatment is more expensive (Thomas et al., 2019).
A report from IQVIA Institute for Human Data Science (2018) found that spending on cancer drugs in the US has doubled since 2012, reaching almost $50 billion in 2017, with two-thirds of this growth tied to drugs launched within the prior five years. List prices of new cancer medications have risen steadily over the past decade. For instance, the median annual cost of a new cancer drug launched in 2017 exceeded $150,000, compared to $79,000 for new cancer drugs in 2013. Currently, global spending on cancer therapies and supportive cancer care exceeds $133 billion, as the value of the
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se medicines is recognized, and a greater share of drug budgets is allocated to these products. By 2023, this amount is projected to reach $200 billion (IQVIA, 2018).
Cancer is associated with substantial expenses resulting from both direct costs and indirect costs. Direct costs of cancer are the health care expenses directly for or related to cancer treatment. In contrast, indirect costs are more difficult to quantify and track but are just as significant and problematic for patients and their families (Brauer & Morasso, 2019). Direct costs include outpatient office co-pays; hospitalization; diagnostic, laboratory, and radiology imaging tests; medications, radiation treatments; and surgical procedures. Types of indirect costs associated with cancer care include the following:
- Transportation to medical appointments and pharmacies (gas, tolls, parking, public transportation fares);
- Employment loss and associated lost income;
- Disability;
- Cost for caregivers, home health aides, childcare;
- Wigs and other cosmetic items to address side effects;
- Travel and lodging near treatment;
- Legal services;
- Fertility treatments or adoption fees;
- Nutritional expenses;
- Mental health services not covered by the third-party payer;
- Cost of medical supplies and durable medical equipment (DME), such as walkers, canes, commodes (ACSCAN, 2017).
Additional variables affecting patient spending include the site of care (in-network oncology specialists and facilities versus out-of-network), treatment options, choices among drug therapies, and supportive care needs (Goss, 2018). According to ACSCAN (2017), “there are three primary approaches to treating cancer: surgery, radiation, and pharmacological therapy (including chemotherapy, targeted therapy, hormone therapy, and immunotherapy). Some patients receive all three modalities of treatment, while others receive one or two types. Costs to the patient vary depending on the type and extent of the treatment (ASCAN, 2017, p. 6).” Cancer therapies have become increasingly effective and less toxic to patients. Therefore, patients are on these drugs for longer periods, leading to higher OOP costs and an increased financial strain (Nipp et al., 2018).
Insurers generally cover most traditional intravenous chemotherapy agents administered on an outpatient basis as part of the patient's medical benefits coverage. The patient is responsible for an office visit co-pay ($20 to $50) that covers the drug as well as the cost of administration and often has a limit on annual OOP spending. The role of oral chemotherapy and other oral cancer specialty drugs is progressively evolving with advancements in genomic profiling and precision medicine over the last several decades. However, as newer, advanced oral cancer drugs are developed, so does the cost (Krzyzanowska & Powis, 2015). One-third of all FDA-approved cancer therapies are available in oral formulations and comprise up to 30% of cancer drugs in development (Hershman, 2016). Oral medications offer several advantages over intravenous therapies and ought to be less expensive due to the lower cost of self-administered treatment, yet they are not. The majority of private insurers treat oral cancer medications as a prescription drug benefit, using a 'tiered' structure that increases the patient's cost-sharing responsibility as the price of the medication increases. Some of the newly approved oral cancer agents can cost up to $10,000 per month, and the majority of patients are expected to pay 20-50% of these costs based on prescription benefit plans. Therefore, a one-year supply of these new drugs could range between $24,000 and $60,000 in additional OOP expenses, and these numbers do not consider the insurance plan premiums. Most patients are faced with considerable OOP expenses without annual OOP limits, and many of these oral medications can exceed $100,000 annually. More than 10% of patients with cancer fail to pick up their prescription medication to start treatment due to the high cost (Kircher et al., 2016). For example, imatinib (Gleevac) is a highly-effective and widely-used oral treatment for chronic myeloid leukemia. Although imatinib (Gleevec) has been on the market for nearly 20 years, it still costs around $140,000 a year. For a patient with a standard health insurance plan that imposes up to 25% co-insurance, they would incur somewhere between $2,500-$4,500 in monthly OOP expenses (Gorkin & Kantarjian, 2016). Oral agents are customarily prescribed for much longer durations than intravenous cancer therapies, escalating OOP costs to exorbitant levels when tallied across the lifespan of the prescribed treatment. Imatinib (Gleevac) is most effective when administered continuously for a minimum of 36 months, raising the price tag to agonizing totals ranging between $90,000-$162,000 (Dusetzina et al., 2014).
Risk Factors
The financial toxicity of cancer is diverse and can range from a variety of factors. The interplay between cancer and financial distress is multifaceted and complex (NCI, 2019). Figure 1 below demonstrates several key contributing factors to the financial toxicity of cancer care.
Figure 1: Severe Illness, Treatment Choice, and Health and Financial Outcomes
Patients with advanced-stage cancers, cancers requiring chemotherapy or radiation therapy, and those with underlying comorbidities are at higher risk of financial hardship. More aggressive treatment and treatments of longer duration are more financially burdensome and contribute to enhanced toxicity, side effects, and disability. Therefore, patients with more aggressive cancers are found to endure higher rates of lost employment, productivity, wages, and more work absenteeism as a result of cancer and its treatment (Guy et al., 2017). Cancer costs can fluctuate throughout the cancer trajectory if the disease progresses or spreads, if complications develop, or if it recurs after treatment ends (ACS, 2019). In these instances, the patient may have already lost significant wages due to reduced working schedules or job loss associated with disability from cancer. It is not uncommon for patients to have already depleted prior savings and funds and find themselves in a situation without the means to provide for their dependents and family. The association between younger age at cancer diagnosis (under 65) and a higher risk of various types of financial hardship is consistently cited throughout the literature, particularly when compared with those 65 years and older (CDC, 2019b). Younger individuals may be particularly vulnerable to financial hardships due to a lack of savings and assets, as well as competing for financial obligations (i.e., student educational debt, children). Further, younger survivors lack the protection of Medicare coverage, placing some without insurance or with high-deductible health plans, heightening the risk for financial toxicity (NCI, 2019).
Adult survivors of childhood cancers seem to be more vulnerable to financial hardship, attributed to the physical, emotional, and mental effects of cancer as a child, as well as the inconsistent disruption to education and limited employment opportunities. Furthermore, childhood cancer survivors face a higher risk of secondary malignancies from cancer treatment and other long-term and late effects of treatment (Miller et al., 2019).
Consequences of Financial Toxicity
Financial toxicity is regarded as a broad and diverse adverse effect of cancer treatment that impacts the patient and their family unit. It is associated with negative outcomes and consequences, such as decreased health-related quality of life and well-being, non-adherence to therapy, and reduced quality of care. Financial toxicity often affects treatment decisions and treatment non-adherence, placing patients at higher risk of mortality (Zafar, 2016). In the study cited earlier by Ramsey et al. (2016), researchers found that patients with cancer who declared bankruptcy had a 79% greater risk of mortality than those who had not declared bankruptcy, highlighting the shocking correlation between financial toxicity and death. Patients on oral cancer treatments are routinely forced to decide between financial ruin or foregoing therapy. The high cost of these potentially life-saving oral medications leads to delays in treatment initiation, non-adherence to dosing, partially filled prescriptions, skipping treatments or medical appointments, and premature discontinuation; all of which have “detrimental consequences on quality of life” and impair survival (Paolella et al., 2018). Cancer survivors reporting financial hardship are more likely to delay, forgo, and have poorer adherence to care (Altice et al., 2017). Patients who are enduring financial toxicity, particularly those who cannot afford their cancer treatments, have higher rates of psychological distress, including increased incidence of depression, anxiety, panic, fear of cancer recurrence, and post-traumatic stress disorder (Paolella et al., 2018).
Legislation and Oral Drug Parity Laws
The Patient Protection and Affordable Care Act contained provisions to improve patients' access to health insurance and reduce costs through tax credits, which primarily benefited patients who were previously uninsured and had low household incomes. However, despite higher rates of insurance coverage, cancer survivors continue to endure greater difficulties accessing and affording health care compared with adults without cancer. For patients who had insurance through their employers (which comprises the vast majority of patients in the US), these provisions had minimal impact in mitigating the growing cost of cancer care (Nipp et al., 2018).
In response to the cost burden associated with oral cancer medications, many states have passed laws requiring health insurers to provide coverage for oral drugs equivalent to the coverage provided for traditional intravenous chemotherapy agents under medical benefit plans. While oral chemotherapy access laws vary from state to state, 43 states and Washington, DC have enacted oral parity laws to promote more equitable cost-sharing. The laws are state-driven and require any health plan that provides coverage for intravenous cancer therapy to provide similar cost coverage for oral cancer medications (Kircher et al., 2016). The laws strive to promote equal access to and coverage for treatment and attempt to offset health insurance cost-sharing schemes as the primary barrier to accessing life-saving medications. However, the laws are not a mandate and only apply to certain types of health plans, ones that already offer chemotherapy coverage. They do not apply to federally mandated plans like Medicare or most employer-sponsored plans (Paolella et al., 2018).
Further, parity laws do not lower costs when the intravenous and oral treatment options are both expensive. Therefore, only a small subset of patients is likely to benefit from the laws as they currently stand, such as those on oral therapies where the comparable intravenous drug is inexpensive, not the newer, more expensive oral agents (Kircher et al., 2016). The Cancer Drug Parity Act of 2017 (HR 1409) was introduced to Congress in March 2017, but there has been little action taken to move it through the legislative process. The proposed legislation specifies that patient-administered cancer drugs are “not subject to any prior authorization, step therapy, dollar or durational limit, co-payment, deductible, or co-insurance that does not apply to provider-administered anti-cancer medications” (Congress HR 1409, 2017). There remains a strong argument to improve oral drug access at the federal level and for Congress to expand parity law protections to those on private insurance. However, if private insurers are forced to cover newer, more expensive oral agents, they will likely respond by raising insurance premiums, and the mandate will be futile. Therefore, parity laws require strategic restructuring and planning to effectively correct this problem (Kircher et al., 2016).
Interventions to Mitigate Financial Toxicity
Evidence-based interventions geared toward effectively alleviating the disproportionate financial hardship experienced by cancer patients and survivors are lacking. It is only within recent years that there has been increased attention on this radically growing problem as the link between financial toxicity and impaired health-related quality of life and physical health has been acknowledged. While interprofessional involvement and clinical expertise are necessary, current literature proposes several strategies and ways for nurses to support and guide patients regarding cost-of-care concerns and ease the financial burden (Thomas et al., 2019). These strategies include assessment and screening measures for financial hardship at cancer diagnosis and throughout cancer care, integration of discussions about the potential for adverse financial consequences of treatments in shared treatment decision-making, and linking patients and survivors to available resources to ensure access to high-quality, evidence-based care (CDC, 2019b). While it is not practical for every clinical nurse to perform financial toxicity assessments on each patient, nurses are advised to at least be alert for patient and family concerns about the cost of care. Facilitating these discussions and connecting patients with resources is the critical first step in combatting this detrimental problem (Becze, 2019).
As a means of identifying patients with cancer who are at risk for financial stress and intervening to reduce that risk, ASCO encourages providers and nurses to utilize the Comprehensive Score for Financial Toxicity (COST) tool to address and measure a patient's risk for financial stress. The COST questionnaire is a patient-reported outcome instrument that includes 11 statements about financial costs, resources, and concerns. For each question, patients are asked to circle one of five possible responses that help determine their level of concern (Souza et al., 2017). The American College of Physicians (ACP) has also devised several free online tools and resources to help aid clinicians and nurses with the cost-of-care discussions. The ACP's Cost Distress Screening Tool can identify patients with potential financial distress, and its complement, Cost of Care Resources for Clinicians and Patients, offers practical solutions to the most common issues (Garbutt, 2019).
Referrals and support should be the standard of care across the cancer trajectory, and nurses are well-equipped to spearhead this undertaking. Oncology nurses commonly form ongoing, compassionate, rewarding, and emotionally-charged relationships with patients due to the nature of a cancer diagnosis and its treatment. Nurses are regularly cited as the most trusted caregiving professional and have the unique opportunity to utilize these therapeutic relationships with patients and clinical assessment skills to identify those at risk for financial hardship. It is recommended that financial toxicity is evaluated as a treatment-related symptom, where the nurse assesses the impact it has on other symptoms such as pain, fatigue, sleep, and psychosocial effects such as anxiety and depression. Nurses are at the front lines to initiate cost-of-care discussions, facilitate timely access to assistance programs, and connect patients with social workers or financial counselors. Linking patients to local resources that offer volunteer-staffed transportation services for medical appointments can alleviate a tremendous burden for some (Becze, 2019).
There are several patient assistance prescription programs from pharmaceutical companies or from other charities to provide patient assistance with co-pays and covering the cost of oral specialty medications. These costs can be covered by grant funding sponsored by the pharmaceutical company directly or a third party. Unfortunately, most patients with government insurance (i.e., Medicare, Medicaid) are not eligible for these discount programs. The vast majority of charity programs require patients to meet income and asset guidelines and are required to submit income and tax return documents before awarding funding for the medication. These can be lengthy, time-consuming, and tiresome activities for ill cancer patients, and the nurse can be a critical resource for the patient and caregivers navigating through this process (Becze, 2019). Patients can also receive assistance with the cost of their medicines from public and private programs. Some programs allow uninsured or underinsured patients to buy drugs at discounted prices, whereas others help people who can't afford any part of their medication costs (Souza et al., 2017).
Nursing Strategies
- Introduce the topic and open the discussion on cost-of-care and financial hardships;
- Perform a financial toxicity assessment using a formal tool such as the COST questionnaire or informally through dialogue and asking open-ended questions;
- Listen closely as patients describe the state of their current situation, concerns, fears, hardships, and needs;
- Compile a list of accessible local, community, and national resources to assist patients with cancer-related financial concerns;
- Facilitate referrals as indicated, to social workers or financial navigators, connect patients to local and community resources, offer national organization resource lists, prescription assistance programs;
- Get involved in advocating for change by speaking to hospital administration and securing funds to help with patients with parking and transportation costs; connect with oncology-based organizations to spearhead fundraising; contact local legislators and senators; get involved in oral chemotherapy parity lawmaking (ACS, 2019; NCI, 2019; Thomas et al., 2019).
Resources and Funding
Prescription Programs
- Medicare Pharmaceutical Assistance Program: medicare.gov/pharmaceutical-assistance-program
- NeedyMeds: needymeds.org
- Medicine Assistance Tool: medicineassistancetool.org
Charity and Patient Advocacy Resources
- Patient Advocate Foundation: patientadvocate.org
- Cancer Financial Assistance Coalition: cancerfac.org
- The Assistance Fund: tafcares.org
- Healthwell Foundation: healthwellfoundation.org
- Patient Access Network Foundation: panfoundation.org
- Good Days: mygooddays.org
- Patient Services Incorporated: patientservicesinc.org (ACS, 2019; Becze, 2019)
Conclusion
One of the greatest barriers to cancer treatment isn't the existence of the right treatment, but patient access to it, and access is often thwarted by cost. Oncologists should decide the most effective treatment based on medical expertise, research evidence, and patient needs, not insurance companies and payment plans. As the number of cancer survivors is expected to reach 26.1 million by 2040, the need for cost-effective solutions to deter the economic burden of cancer treatment becomes increasingly dire (ACS, 2019). Getting control of and managing financial toxicity will improve the health outcomes of patients (Souza et al., 2017).
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