Financial Toxicity of Cancer Care Nursing CE Course

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 patient dependence on cost-sharing, 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. In addition, oncologic care has shifted over the last decade, moving from community-based clinics to hospital-based outpatient care, where treatment is more expensive (CDC, 2021; 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 previous 5 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. Global spending on cancer therapies and supportive cancer care has also grown, exceeding $164 billion in 2020. The value of these medicines has been recognized, and a greater share of drug budgets is allocated to these products. By 2025, this amount is projected to reach $269 billion (IQVIA, 2021).

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, such as outpatient office co-pays; hospitalization; diagnostic, laboratory, and radiology imaging tests; medications; radiation treatments; and surgical procedures. 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). 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 facilities
• legal services
• fertility treatments or adoption fees
• nutritional expenses, including supplementation
• mental health services not covered by the third-party payer
• cost of medical supplies and durable medical equipment (DME), such as walkers, canes, and 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 treatment modalities, while others receive 1 or 2 types. Costs to the patient vary depending on the type and extent of the treatment (p. 6).

Cancer therapies have become increasingly effective and less toxic to patients. Therefore, patients can be on these drugs for longer periods when needed, 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, the cost increases as newer, advanced oral cancer drugs are developed. One-third of all US Food and Drug Administration (FDA)-approved cancer therapies are available in oral formulations and comprise up to 30% of cancer drugs in development. 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. Most 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 most patients are expected to pay 20% to 50% of these costs based on their prescription benefit plan. Therefore, a 1-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 have considerable OOP expenses without annual OOP limits, and many of these oral medications can exceed $100,000 annually without OOP limits. More than 10% of patients with cancer are unable to pick up their prescription medication from the pharmacy to start treatment due to the high cost. 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. A patient with a standard health insurance plan that imposes up to 25% co-insurance would incur somewhere between $2,500 to $4,500 in monthly OOP expenses. Oral agents are customarily prescribed for much longer durations than intravenous cancer therapies, escalating OOP costs to excessive 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 $90,000 - $162,000 (Gorkin & Kantarjian, 2016; Hershman, 2016; Kircher et al., 2016; Lentz et al., 2019).

 

Risk Factors for Financial Toxicity

The financial toxicity of cancer is diverse and can range due to various factors. The interplay between cancer and financial distress is multifaceted and complex (NCI, 2019). Figure 1 demonstrates several key contributing factors to the financial toxicity of cancer care.

Figure 1

Severe Illness, Treatment Choice, and Health and Financial Outcomes

(Ramsey, 2018)

Patients with advanced-stage cancers, cancers requiring chemotherapy or radiation therapy, and those with underlying comorbidities are at higher risk of financial toxicity. 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 have been found to endure higher rates of work absenteeism, leading to lost employment, productivity, and wages due to cancer and its treatment. Patients transitioning to end-of-life (EOL) care also experience significant financial distress, often experiencing $10,000 in higher costs in the final 4 months of life. However, when patients at EOL are referred to hospice care, they often experience fewer hospitalizations, intensive care days, and invasive procedures resulting in approximately $90,000 less in financial expenditures than those not in hospice. Medicare and Medicaid cover 100% of hospice care costs, and most private insurance companies cover 100% once the OOP max has been reached (Guy et al., 2017; Lentz et al., 2019).

Cancer costs can fluctuate throughout the cancer trajectory if the disease progresses or spreads, complications develop, or recurs after treatment ends. In these instances, the patient may have already lost significant wages due to a limited work schedule or job loss. 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. Younger individuals may be particularly vulnerable to financial hardships due to a lack of savings/assets and competing financial obligations (i.e., student loan 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 (ASC, 2022; CDC, 2021; NCI, 2019).

Adult survivors of childhood cancers are more vulnerable to financial hardship, attributed to the physical, emotional, and mental effects of cancer as a child and 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 treatment effects (Miller et al., 2019).

 

Consequences of Financial Toxicity

Financial toxicity is a broad and diverse adverse effect of cancer treatment that impacts the patient and their family. It is associated with adverse 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 adherence, placing patients at higher mortality risk. Ramsey and colleagues (2016) found that patients with cancer who declared bankruptcy had a 79% greater mortality risk 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 treatment. 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 of therapy, all of which have detrimental consequences on quality of life and impair survival. Cancer survivors reporting financial hardship are more likely to delay, forgo, and are unable to adhere to care. Patients enduring financial toxicity, particularly those who cannot afford their cancer treatments, have higher rates of psychological distress, including increased depression, anxiety, panic, fear of cancer recurrence, and post-traumatic stress disorder (Altice et al., 2017; Paolella et al., 2018).

 

Legislation and Oral Drug Parity Laws

The Patient Protection and Affordable Care Act contained provisions to improve a patient's access to health insurance and reduce costs through tax credits, primarily benefiting previously uninsured patients with low household incomes. However, despite higher insurance coverage rates, cancer survivors endure greater difficulties accessing and affording health care than 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 the District of Columbia 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. 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 mandated and only apply to certain types of health plans that already offer chemotherapy coverage. They do not apply to federally mandated programs like Medicare or most employer-sponsored plans (Kircher et al., 2016; Paolella et al., 2018).

Further, parity laws do not lower costs when the intravenous and oral treatment options are 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. Those on newer, more expensive oral agents may not reap this reward (Kircher et al., 2016). The Cancer Drug Parity Act of 2017 (HR 1409) was introduced to Congress in March 2017 and reintroduced in 2021 as the Cancer Drug Parity Act of 2021 (HR 4385), 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 prior authorization, step therapy, dollar or durational limit, co-payment, deductible, or co-insurance, which does not apply to provider-administered anti-cancer medications (Congress HR 4385, 2021). There remains a solid 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 are lacking to effectively alleviate the disproportionate financial hardship experienced by cancer patients and survivors. In recent years, 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 economic 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, 2021). 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 to 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 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 1 of 5 possible responses that help determine their level of concern. The American College of Physicians (ACP) has also devised several free online tools and resources to help clinicians and nurses with cost-of-care discussions. The ACP's Cost Distress Screening Tool can identify patients with potential financial distress. Its complement, Cost of Care Resources for Clinicians and Patients, offers practical solutions to the most common issues (Garbutt, 2019; Souza et al., 2017).

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 granting them a unique opportunity to utilize their therapeutic relationships and clinical assessment skills to identify those at risk for financial hardship. Financial toxicity should be evaluated as a treatment-related symptom; nurses can assess its impact on 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 some burdens (Becze, 2019).

Several patient assistance prescription programs from pharmaceutical companies or other charities contribute to co-pays and cover 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 and Medicaid) are not eligible for these discount programs. Most charity programs require patients to meet income and asset guidelines; applicants must submit income and tax return documents before funding for the medication is awarded. 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 cannot afford any part of their medication costs (Becze, 2019; Souza et al., 2017). Nursing strategies can include

• introducing the topic and opening the discussion on cost-of-care and financial hardships
• performing a financial toxicity assessment using a formal tool such as the COST questionnaire or informally through dialogue and asking open-ended questions
• listening as patients describe the state of their current situation, concerns, fears, hardships, and needs
• compiling a list of accessible local, community, and national resources to assist patients with cancer-related financial concerns
• facilitating referrals, as indicated, to social workers or financial navigators, connecting patients to local and community resources, offering national organization resource lists, prescription assistance programs
• advocating for change by speaking to hospital administration and securing funds to help patients with parking and transportation costs; connecting with oncology-based organizations to spearhead fundraising; contacting local legislators and senators; lobbying for oral chemotherapy parity laws (ACS, 2022; NCI, 2019; Thomas et al., 2019)

There are various prescription drug programs and patient advocacy resources that the nurse should be aware of to provide to the patient:

• Prescription programs
• Medicare Pharmaceutical Assistance Program: medicare.gov/pharmaceutical-assistance-program
• NeedyMeds: needymeds.org
• Medicine Assistance Tool: medicineassistancetool.org (ACS, 2022; Becze, 2019)
•  
• 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, 2022; Becze, 2019)

 

Financial Navigator

Although healthcare providers can help to identify patients experiencing or at risk for financial toxicity of cancer care, healthcare institutions must take more aggressive approaches to assist patients in alleviating this financial burden. In addition to incorporating consistent screening into the current workflow, healthcare institutions should invest in supportive oncology services. A financial navigator is a supportive service that recent evidence has found beneficial. A financial navigator is a person or team who works with patients and their families to help them understand OOP expenses and what their health insurance plans may or may not cover. In addition, these navigators have the knowledge and skills to assist patients in setting up payment plans, finding cost-saving treatment methods, and applying for additional insurance coverage or grants that may cover the costs of prescription drugs or other cancer treatments. Unfortunately, these tasks are often overwhelming for patients and require a significant time investment. Providers, nurses, and social workers can assist with these processes, but their primary focus is direct patient care, leaving the patient and family to navigate these challenging tasks alone. When healthcare institutions invest in a financial navigator, more patients will receive the assistance they need to address or prevent financial toxicity. A nurse or social worker does not usually fill a financial navigator position. However, it should be filled by someone with experience in financial coordination, human resources, community resources, and applying for public assistance (Lentz et al., 2019).

 

Conclusion

One of the most significant barriers to cancer treatment is not the existence of the optimal 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. Getting control of and managing financial toxicity will improve the health outcomes of patients (ACS, 2022; Souza et al., 2017).  

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