Coping With the High Cost of Cancer

A breast cancer diagnosis can sometimes lead to financial hardship. The National Cancer Institute recognizes financial hardship, also known as financial distress or financial toxicity, as the negative impact of the “costs” of cancer care on the lives of cancer patients and their loved ones. There is a growing amount of research to suggest financial hardship among cancer patients is increasing in prevalence. There are many variables that contribute to financial hardship, and evidence suggests the need to recognize it during the early stages of a cancer diagnosis and to treat it much like a clinician would treat a cancer’s symptoms or a treatment’s side effects. This chapter will explore some of the many contributing factors to financial hardship experienced by cancer patients and various ways to reduce it.

The Significance Behind Recognizing Financial Hardship in People With Cancer

A study conducted by the National Opinion Resource Center (NORC) at the University of Chicago found that 4 in 10 people reported they fear the costs associated with a serious illness more than they fear the illness itself. Fifty-three percent of respondents said they had at least one of the following situations occur because of healthcare costs within the previous year: depleting savings (36%), credit card debt (32%), choosing between paying medical bills and affording basic necessities (30%), and an inability to add any money into savings because of healthcare costs (41%). In a survey conducted by the Pink Fund, 562 female breast cancer patients responded; the results illustrated how a breast cancer diagnosis and subsequent treatment affected their personal finances, career, and well-being. In total, 46% of those surveyed reported a reduction in spending on essentials such as food, clothing, and shelter in order to pay for their out-of-pocket treatment expenses. Thirty-seven percent of those surveyed went into debt, and some reported using the majority of their assets to pay for their care (23%).

As these studies identified, financial hardship for cancer patients can take many forms. Not only can it increase medical expenses and patient debt; it can also deplete savings and other assets. A cancer diagnosis can have practical implications that create financial hardship as well. Cancer and the treatment prescribed can result in loss of economic resources and opportunities for patients and families. There are also indirect costs of cancer care including monetary losses associated with time spent receiving medical care and time lost from work or other usual activities. The Pink Fund survey found that 36% of people with breast cancer reported loss of income due to loss of job or inability to perform work-related duties as a result of their treatment.

Financial hardship experienced by cancer patients is a complicated matter. An initial breast cancer diagnosis can lead to a ripple effect of financial insecurities resulting from increased medical debt, a potential loss of income due to inability to work, and the possibility of losing health insurance because of the threat of the potential loss of employment. This can further lead to other troubling outcomes including housing and food insecurities, increased concerns about affording basic needs (i.e., transportation, utilities, and clothing), and a reduction in savings and other assets sometimes leading to increased debt and even bankruptcy.

The research suggests financial hardship for cancer patients can have a major impact on the quality of their lives as they receive cancer care. In a March 2019 Kaiser Family Foundation poll, more than one-fourth of US adults (26%) reported they or a household member had problems paying medical bills in the past year, and about half of this group (12%) said the bills had a major impact on their family. These same adults indicated cutting costs in other areas to pay for their medical bills, such as spending on vacations, major household purchases, and even basic household items. As a result, it is very important to recognize financial hardship as a potential quality-of-life risk for cancer patients, and it should be evaluated throughout the cancer care continuum in the same way cancer treatment side effects are identified and managed.

The research also suggests that when identified early on, financial hardship can be managed or, at the very least, its negative effect on the quality of a cancer patient’s life and care can be reduced. As previously noted, there are different variables that may contribute to financial hardship. Recognizing it and treating it can be a complex matter that includes a number of different intervention types. Financial hardship in cancer patients is a result of multiple layers of contributing factors. On the patient level, a cancer patient’s ethnic background, socioeconomic status, and access to insurance may be factors. On the healthcare provider level, transparency of medical costs, access to charity care programs, and other financial aid for patients should be considered. On a greater societal level, public policy creation and trends in healthcare spending, particularly in cancer care, may also be contributing factors in financial hardship. In the sections that follow, we will explore some of the ways the impact of financial hardship can be reduced on each of these levels. The primary goal is to increase the quality of life of breast cancer patients as they go through the cancer care experience.

The Patient Experience

Let’s Talk Health Insurance

The majority of people in the United States (91.4%) have a health insurance plan of some kind. Health insurance coverage can be accessed in many ways: through an employer-sponsored plan, the federally funded marketplace, directly from private insurers, or government plans like Medicare and Medicaid. Health insurance coverage serves as the backbone of an American’s experience with healthcare costs when receiving medical care. There are many elements that make up a health insurance policy that require attention and can either serve as a lifeline toward accessing life-saving breast cancer treatment or a barrier. It is extremely important for Americans using the healthcare system to understand as much about their healthcare coverage as possible, thus becoming more informed consumers of care which would lead them toward less costly outcomes.

Where Does Your Health Insurance Plan Come From?

The majority of Americans who are employed will have access to employer-sponsored health insurance plans. Employer-sponsored health plans are offered to employees and their dependents as a benefit of employment. These plans currently provide some level of health insurance coverage for approximately 160 million Americans. Employers choose the plan and determine its benefit structure. Employers and employees typically share the cost of health insurance premiums.

The Affordable Care Act is a comprehensive health care reform law that was enacted in March 2010. The law’s primary goal is to make affordable health insurance available to more people. The law provides consumers with subsidies that lower costs for households with incomes between 100% and 400% of the federal poverty level. For Americans who do not have access to health insurance through an employer, this law has created an insurance marketplace that allows them to explore health insurance plans in their area. One can enroll in a plan during an open enrollment or special election period. Unlike commercially insured plans prior to the Affordable Care Act, insurance options available through the marketplace do not discriminate against people who have preexisting medical conditions, including cancer.

Other government-supported plans including Medicare and Medicaid may also serve as options for Americans who meet specific qualifications. At this time, those age 65 years and older or receiving Social Security disability benefits may qualify for Medicare benefits. Medicaid is available to Americans who meet income (and sometimes asset) requirements. These income requirements may vary depending on the state in which a person resides.

There are many different types of insurance plans and different ways to enroll in one. Most importantly, it is very helpful to understand which of the options listed is the best one and to take advantage of any opportunities to secure coverage designed to reduce cancer care–related costs.

It is also necessary to understand what type of benefits are available through the health insurance plan. This is an important way to become an informed healthcare consumer. Being equipped with valuable information about available health insurance options enhances your ability to prepare for any costs stemming from the cancer care received. When understanding health insurance coverage, it is recommended to identify specific key components of a plan, including plan type, plan premium, medical deductible, maximum annual out-of-pocket costs, office visit copays, and prescription benefits. Many plans will also offer dental and vision coverage. For the purpose of this chapter, the focus is on plan benefits that will most impact coverage for breast cancer treatment-related expenses.

Plan Type

Examples of plan types as defined on include:

  • Exclusive Provider Organization: a managed care plan where services are covered only if the patient uses doctors, specialists, or hospitals in the plan’s network (except in an emergency).

  • Health Maintenance Organization (HMO): a type of health insurance plan that usually limits coverage to care from doctors who work for or contract with the HMO. It generally will not cover out-of-network care except in an emergency. An HMO may require a patient to live or work in its service area to be eligible for coverage. HMOs often provide integrated care and focus on prevention and wellness.

  • Point of Service (POS): a type of plan where the cost is less if the patient uses doctors, hospitals, and other healthcare providers that belong to the plan’s network. POS plans require a referral from your primary care doctor in order to see a specialist.

  • Preferred Provider Organization (PPO): a type of health plan where the patient pays less if they use providers in the plan’s network. They can use doctors, hospitals, and providers outside of the network without a referral for an additional cost.

Plan Premiums, Deductibles, Out-of-Pocket Maximums, and Copays

A health insurance plan often includes certain components that determine the costs the insured may be responsible for throughout a year of coverage. Understanding these components will help prepare patients for potential healthcare-related costs that may be incurred as a result of a person’s breast cancer care. These components are defined by and are listed below:

  • Insurance premium: the amount you are responsible to pay for your health insurance plan. Normally this premium is paid monthly, but some plans allow participants to pay on a quarterly or biannual schedule.

  • Deductible: The amount you pay for covered health care services before your insurance plan starts to pay.

  • Annual out-of-pocket costs: Copayments are fixed amounts paid for a covered healthcare service after the deductible is paid. Coinsurance is the percentage of costs of a covered healthcare service after the deductible is paid. The annual out-of-pocket maximum is the total (coinsurance plus copays) healthcare costs paid during the year.

  • Prescription benefits: The majority of health insurance plans also come with prescription benefits. These benefits are managed by a pharmacy benefits manager, who determines the medications that are covered by the plan, as well as how much beneficiaries pay for the medication and the qualifying pharmacies where prescriptions can be filled.

It is important for cancer patients to have a good understanding of their health insurance benefits, as they will be better prepared to manage any bills that may arise due to their breast cancer care. Only considering the premium cost of an insurance policy would be detrimental to gaining the full value of an insurance plan. Over half of the respondents in one survey said they received a medical bill for a cost they thought was covered by their health insurance in the past 12 months, and a similar proportion reported receiving a medical bill saying the amount they owed was higher than expected. Breast cancer treatment can be very expensive, and the care received may include a wide variety of treatments ranging from surgical procedures to chemotherapy to radiation therapy, among many other medical interventions. As a result, health insurance benefits have been proven to play an integral role in covering the costs of these treatments. It is important to understand this role along with the benefits it brings, and the potential costs stemming from any deductibles, copays, and/or coinsurance you may be responsible to pay. An understanding of health insurance coverage is one of the best ways to help reduce financial hardship in the future.

Seeking Transparency in Healthcare Costs

One way to gain a better understanding of the types of healthcare costs associated with breast cancer care is to ask questions about them. In 2009, the American Society of Clinical Oncology’s (ASCO) Task Force on the Cost of Cancer Care identified patient-physician cost communication as a critical component of high-quality care. When patients were asked about their attitudes toward discussions about cost communication, 50% of patients desired these discussions but only 33% actually had them. Any step a patient can take toward a better understanding of the costs associated with their healthcare is beneficial. There is also a level of consumerism associated with health care. A breast cancer patient’s right to be informed of the potential side effects of treatment, along with a plan to address those side effects, is a vital part of a patient’s care plan. If we begin to acknowledge that the cost of such treatment can induce side effects such as financial hardship, it should be just as important to have conversations about healthcare cost transparency. As indicated in the study mentioned earlier, it is unlikely that healthcare providers will have these kinds of conversations with patients, yet they could have a significant impact on the quality of their cancer care experience.

Look Deeper Into the Healthcare System for Financial Assistance

In most healthcare systems there are financial navigators, financial counselors, or financial advocates who are available to provide assistance to cancer patients. Some systems are more developed than others and may have a combination of these specialists. Other systems may employ just one specialist who manages all billing and insurance-related matters. In most cases, one or more of these specialists should be available to help answer questions about health insurance coverage and potential healthcare costs patients may experience when starting their cancer care journey. The same concept that applies to understanding health insurance benefits applies to understanding possible costs that stem from the gaps in coverage as they pertain to the cancer treatment plan. The more a cancer patient understands their healthcare costs, the easier it will be to explore options available to help reduce them. There are often oncology social workers, nurse navigators, or lay patient navigators and public benefits specialists who are available to help patients navigate healthcare-related expenses. Taking an active approach by inquiring about the various resources and healthcare professionals in the system who can help uncover healthcare costs and answer questions about ways to reduce these expenses will go a long way toward reducing the impact of financial hardship, especially for those at most risk to experience it.

The Role of the Healthcare Organization

Unfortunately, high healthcare costs disproportionately affect uninsured adults, Black and Hispanic adults, and those with lower incomes. Black and Hispanic adults (58% each) have reported delaying or skipping at least one type of medical care in the past year due to cost, in comparison to about half (49%) of White adults. Similarly, 63% of those with household incomes under $40,000 report delaying some sort of care due to cost, compared with 31% of those in households making $90,000 or more annually. This data is quite concerning and speaks to the fact that members of minority groups are more likely to experience financial hardship in comparison to their White counterparts. This further emphasizes the systemic breakdown of how healthcare coverage and services are inequitably provided to minorities and those with lower socioeconomic status. It is imperative for healthcare organizations to recognize the large gap in their healthcare delivery services reaching minorities, the underinsured, and those with lower incomes. This argument is particularly strong when it comes to people diagnosed with cancer who frequently require multiple interventions. In the paragraphs to follow, there are some solutions to address reaching more people and helping them receive the necessary cancer treatment they need while also recognizing the financial hardship this may cause them.

It Starts With Cancer Screenings

Screening for cancer means checking for precancerous lesions or cancer in people who are experiencing no signs or symptoms. The aim is to find an abnormality at the earliest possible time in cancer development. If a cancer screening test shows a precancerous lesion is present, it can be treated or surgically removed before becoming cancer. If a test finds a cancer at an early stage of development—stage I or II—before it has spread, it is more likely that the patient can be treated successfully, resulting in cure and an increase in long-term survival. Even though the breast cancer screening rate—as defined by the percentage of women aged 50–74 years who report having had a screening mammogram in the past 2 years—for Black women is very similar to that for White women, 9% of Black women are diagnosed with breast cancer when the disease is at an advanced stage, compared with 5% of White women. The disparity in advanced stage of diagnosis is one factor contributing to the striking disparity in the breast cancer death rates for Black and White women, which are 27.3 per 100,000 and 19.6 per 100,000, respectively. This is a small sample of the greater impact of healthcare disparities on minorities. However, this information also provides some direction for healthcare organizations serving the greater community to look for ways to better reach minorities and lower income families. In so doing, a number of outcomes could be achieved, including an increase in early detection of breast cancer in minorities, resulting in a decrease in death rates from cancer.

Increase Community Outreach

One way for healthcare organizations to reach more people in their communities, educating them on screening programs, and connecting them with local medical services is to incorporate a community cancer outreach program. Community outreach plays a critical role in achieving this goal by connecting with community organizations, churches and parishes, educational institutions, and other community services to gain a better understanding of the needs and interests of community members. Creating a forum within these establishments to provide education equips community members with the resources and information they need to receive necessary medical care and engagement in early detection programs. A community outreach coordinator can be that member of the oncology healthcare team who is able to develop relationships with community shareholders, aligning the needs of the people in the community with the goals and resources of the healthcare organization.

Employ a Prior Authorization Team

Healthcare organizations can also help reduce financial hardship for cancer patients by ensuring there is a preservice or prior authorization department capable of evaluating a patient’s health insurance benefits, verifying coverage for prescribed medical services, and proactively recognizing potential out-of-pocket costs the patient may encounter. This department plays an integral role in ensuring cancer patients have sufficient health insurance coverage for their prescribed care. It also offers an added layer of financial protection for the healthcare organization by determining the amount of coverage available for planned treatment and securing any prior authorization approvals needed to ensure coverage is available. A preservice team can even take on added roles that can reduce the overall impact of financial hardship on both the cancer patient and healthcare organization alike. Added roles could include the ability to assess a patient’s eligibility for financial assistance programs that reduce the cost of cancer care. This team can serve as the first line of defense from financial hardship. As noted earlier in this chapter, it is very important to identify any key characteristics of patients’ cancer situations early on in their care. The following characteristics of a cancer patient’s circumstances should trigger the need for closer examination by a member of the preservices team of a patient’s potential for financial hardship:

  • 1.

    Type of health insurance coverage:

    • a.

      No health insurance or lack of coverage for prescribed treatment

    • b.

      Limited benefits plan

    • c.

      Medicare A and B only

    • d.

      High deductible/high out-of-pocket maximum plan

The goal is to optimize medical insurance coverage

Understanding a patient’s medical insurance coverage is a very important step toward reducing a primary cause of his/her financial distress. Medical expenses are a main driving force behind determining the potential for financial hardship that can lead to increased stress during a person’s cancer treatment. A thorough evaluation of a patient’s medical coverage associated with the cancer treatment plan should be completed. This evaluation incorporates the potential costs of care resulting from a patient’s out-of-pocket responsibilities, which include annual deductibles, copays, and other expenses. Factoring into this evaluation are the potential costs of the treatment itself. Following this evaluation, and in the event a patient may be at greater risk for financial distress, measures should be taken to determine whether there are ways to improve the current insurance coverage or explore better alternative medical benefits.

An illustration of this process is described below:

A 72-year-old female recently diagnosed with breast cancer will soon be starting an expensive intravenous (IV) chemotherapy regimen. Upon evaluation of her medical coverage, she has been found to have only Medicare part A and B benefits. As a result of this evaluation, she is at high risk to experience significant medical expenses because these benefits include only 80% coverage for her outpatient chemotherapy treatments with no annual out-of-pocket maximum.

This patient should be evaluated to determine whether her insurance benefits can be improved. This will include assessment for additional medical coverage (i.e., Medicare supplemental policy), state benefits (i.e., secondary Medicaid insurance), or an alternative plan (i.e., Medicare Advantage plan). In this scenario, the primary goal is to increase the patient’s medical coverage so to reduce the overall financial distress she may experience during her cancer care. When possible, this should be done before treatment is started.

  • 2.

    Cancer diagnosis including type and stage

    • The impact of a cancer diagnosis, and the care plan that follows, can take many forms. It is important to take into consideration how cancer patients’ lives may be impacted because of their diagnosis and future treatment course. For example, a breast cancer patient diagnosed early – stage I – may require surgical removal of the tumor and surveillance thereafter. The financial impact for this patient may look very different from a diagnosis of stage IV breast cancer that will require multiple interventions including surgery, radiation, and chemotherapy, not to mention the additional economic toll this diagnosis and subsequent treatment may bring. Proactively evaluating the potential financial impact a cancer diagnosis and treatment plan may have could ultimately lead to a reduction in the financial distress it causes the patient.

  • 3.

    Treatment plan

    • Cancer treatment can be very expensive. Even with medical insurance coverage, high treatment costs can result from the need to pay an annual deductible, copays or out-of-pocket charges. It is important to examine breast cancer patients’ treatment plans through an economic lens, as it may impact their overall financial health. There are significant differences in the cost associated with surveillance care in comparison to a surgical procedure, radiation, or oral or IV chemotherapy, particularly when considering some of the newer molecular-based therapies. Taking this a step further, it is just as important to identify patients’ direct costs, which are often dictated by the insurance plans they possess. For example, a low deductible and out-of-pocket medical policy may not significantly impact a patient’s wallet if surgery, radiation, or in-office treatment is prescribed. However, this same patient may have a prescription plan that includes a high out-of-pocket responsibility. A prescription for an oral chemotherapy agent could be cost prohibitive.

  • 4.

    Patient socioeconomic status

    • For many patients, a diagnosis of breast cancer can affect their ability to work, oftentimes causing them to decrease the hours they work or take a leave from work entirely. The added stress associated with loss of income can adversely affect the quality of their lives and their cancer care experience. In other cases, patients may be receiving a fixed income or have limited assets to afford additional medical expenses associated with their breast cancer care. Patients experiencing these circumstances should be evaluated for various financial assistance options, which can include employer-sponsored short- and long-term disability benefits, Social Security disability benefits, and other local, regional, and national financial aid resources. There may be financial assistance programs available for patients with a breast cancer diagnosis who meet certain criteria. The primary goal is to evaluate these patients and connect them to any resources for which they may qualify.

    • More closely examining the impact of these characteristics can reduce the impact of financial hardship by identifying risk factors early and employing resources to help those at greatest risk. A healthcare organization should employ skilled professionals who are trained in various ways to identify, assess, evaluate, and assist breast cancer patients who are at high risk for financial distress. Listed below are examples of professionals in the healthcare setting employed to support a cancer patient’s financial needs.

Financial Counselors

In many healthcare organizations, financial counselors are often employed. These counselors tend to be members of the revenue cycle team and often serve as resources for cancer patients who have questions about their medical bills. They play an integral role in identifying patients who incur high medical expenses, working with them to reduce these bills or arrange payment plans.

Financial Advocates

Financial advocates often perform a similar role, providing assistance for cancer patients when billing questions arise. They also may help patients gain a better understanding of their health insurance benefits and assist patients by helping them identify alternative forms of coverage that may improve their insurance coverage (i.e., state Medicaid plans).

Financial Navigators

Financial navigators provide similar assistance to the financial counselors and advocates mentioned earlier. However, they tend to take a more holistic approach toward treating financial hardship. Financial navigators evaluate patients as a whole, recognizing that their financial hardship extends beyond cancer care and into their personal lives, including their employment background, household breadwinners, and how these factors are associated with patients’ ability to manage medical debt resulting from their cancer care experiences. Navigators will work with patients to optimize insurance coverage and identify financial aid resources available to reduce the financial burden cancer care may impose.

Oncology Social Workers

Oncology social workers often play a similar role as financial navigators. Social workers also take a big-picture approach when assessing patient needs that go beyond the cancer treatment itself. Social workers can help determine whether barriers to care include indirect cancer costs like transportation needs, living expenses, and housing and food insecurities. Social workers can collaborate with patients to identify practical ways to reduce barriers for them to receive their care without creating additional financial hardship.

Public Benefits Specialists

A public benefits specialist can play an important role in supporting both the patient and the rest of the healthcare team. Public benefits specialists possess a strong knowledge of public policy and the government programs designed to provide assistance to people who meet specific requirements. These programs can include state and government-funded Medicaid benefits, food-share programs, housing assistance programs, and Social Security benefits, to name a few.

The Pharmacy Team

A pharmacist or pharmacy liaison can serve as a valuable resource for cancer patients to identify potential cost savings programs for medications which include but are not limited to medication discount programs and manufacturer co-pay cards. The pharmacy team may also be able to identify lesser costly generic alternatives for cancer patients to reduce their overall medication costs.

Financial Health Advisors

A financial health advisor is not found to be a common service provided within a healthcare organization. However, with the understanding that financial hardship extends beyond the costs of cancer care itself, a financial health advisor can be very valuable in helping cancer patients overcome some of the financial burden they face resulting from practical needs such as housing, food, and utilities, and debt incurred outside of the healthcare system (i.e., credit card debt). A good financial health advisor will more closely examine a cancer patient’s overall budget as it pertains to their income, asset resources, and debts, and help them identify ways to reduce or consolidate debt to improve their budget and make it easier to manage any additional costs incurred from cancer treatment.

It truly takes a village to support cancer patients and help them reduce financial hardship. There are many healthcare professionals available that provide a unique set of skills to evaluate different aspects of a cancer patient’s financial circumstances. In so doing, a broader picture is created, and through it, a more comprehensive approach toward reducing financial hardship can be implemented.

Making the Healthcare Organization’s Role More Transparent

Another way healthcare organizations can reduce the financial burden experienced by many cancer patients is to be more transparent about costs of cancer care services. Cancer patients are faced with a lot of information as it pertains to the type of cancer they have, the differences in treatment options available to them, and the cancer care plan moving forward. They receive a wealth of information from their providers about their cancer: its primary location, the stage, and any other locations where it has spread; and are also given handouts and booklets detailing their cancer treatment: the mechanism of delivery (oral/IV/radiation/surgery), the length of treatment, and side effects associated with it. This is very important information for a cancer patient to understand in order to make informed decisions about the type of care they choose to receive. However, understanding a cancer patient’s financial circumstances may also help determine a successful outcome for treatment, and it could be argued it is just as important for them to understand the possible costs associated with the care itself. It is not uncommon for treatment to be prescribed that the patient cannot afford. They may even skip appointments or delay treatments because of their office visit copays. A conversation about the cost of care needs to occur with cancer patients prior to their coming to a decision about their treatment. This will ensure that patients are fully informed about their treatment options and provide them with all the information necessary to make the best decision. After all, a patient’s quality of life has already been impacted after receiving a breast cancer diagnosis. It is therefore imperative they receive all the information about their cancer care, which includes the potential cost burden. Without a clear understanding of this, it has the potential to negatively affect their quality of life and increase the risk of poor adherence to the treatment plan.

Charity Care

Many healthcare organizations offer charity care programs to assist cancer patients with their medical expenses. These programs take many forms. Some healthcare organizations provide a very comprehensive charity program that includes discounting the cost of medical services and even writing off medical bills for those patients who meet income/asset and other requirements. Other programs are less comprehensive and may simply provide cancer patients with the option to create a payment plan to make payments more manageable. It is important to understand the financial needs of cancer patients as a way to develop an effective charity care program. These programs sometimes serve as the one lifeline for cancer patients and their ability to access the treatment they need to survive. The healthcare organization must take a close look at the charity care available for cancer patients and how much of an impact it has on their ability to access and receive their treatment with little disruption. For example, a charity care program that only offers a payment plan for patients may not be enough for them to follow through with their treatment. If a cancer patient is unable to meet the payment arrangements set forth by the healthcare organization, the cancer patient may have no choice but to stop treatment or leave the healthcare system entirely. This would only create a greater financial burden for the patient and healthcare organization in the future in the event the patient eventually returns for care because their cancer has progressed. Charity care programs can play a very important role in ensuring that cancer patients feel comfortable adhering to their cancer treatment plan, with the understanding that they may incur costs along the way.

Understand Financial Assistance Resources

There are many national organizations, and often local ones, that offer financial assistance for breast cancer patients. These organizations receive donations from various sources including individuals, healthcare advocacy groups, and even pharmaceutical companies. Their primary goal is to support cancer patients by offering financial aid to reduce the financial burden of their cancer treatment costs. A secondary benefit of these programs is the financial aid cancer patients receive can help ensure they are able to afford the cost of their treatment, reducing financial distress and increasing the likelihood they will comply with the treatment plan. Examples of national foundations that offer financial support for breast cancer patients include CancerCare, the Patient Advocate Foundation, the Patient Access Network Foundation, and the Komen Treatment Assistance Fund. Creating a resource list that includes these foundations, and the many others available, is a first step toward connecting patients to financial assistance and lowering their financial distress.

Utilize a Software Tool to Identify Financial Assistance Funding Sources

There are some very useful software programs that healthcare organizations can utilize to more efficiently identify financial resources that are available to reduce the financial impact on breast cancer patients. Two examples, TaylorMed and Vivor, have the ability to integrate their services with a healthcare organization’s electronic medical record. The result is a proactive way to identify cancer patients who are at greater risk for financial hardship because of the coverage they possess and the treatment they will receive. The primary role of these software tools is to match cancer patients to financial assistance resources based on their health insurance benefits, cancer diagnosis, and treatment plans. Just as importantly, this matching takes place prior to a cancer patient receiving their treatment or early in their care. An illustration of the practical usefulness of these software tools is described below:

This patient was recently diagnosed with advanced breast cancer and planned therapy included an oral cyclin-dependent kinase inhibitor, palbociclib (Ibrance). An order was created by the oncologist and submitted to the prior authorization team to evaluate the patient’s insurance benefits and identify the costs, if any, that they would have to acquire this medication. The patient was found to have a Medicare Advantage plan, which included Medicare prescription coverage. Following the approval of a prior authorization through their Medicare prescription plan, the prior authorization team determined the plan would cover this medication, but the first month’s supply was projected to cost approximately $1200 out of pocket. Before the prior authorization team contacted the patient to provide them with this large out-of-pocket cost, the team utilized Vivor, the financial assistance software tool, to determine whether the patient might qualify for any form of financial assistance. Vivor used the medical and insurance information integrated into its platform through the healthcare organization’s electronic medical record, which included the following characteristics of the patient’s profile: (1) basic demographic information (address, phone number), (2) health insurance plan (i.e., commercial, government, none), (3) diagnosis (i.e., metastatic breast cancer), and (4) cancer medication list. Applying the information from this profile, Vivor was able to identify at least three different breast cancer copayment assistance funds. Unfortunately, none of the funds were open and available during the time of this investigation. With an additional click of a button, Vivor was also able to identify the manufacturer assistance program, in this case Pfizer Oncology Together, and provide the prior authorization team with all the necessary information to determine whether the patient might qualify for a free supply of their prescribed palbociclib medication.

The result: the patient was notified by the prior authorization team and informed of their high out-of-pocket cost for their palbociclib and the patient explained they would be unable to afford this cost. The conversation did not end there. The patient eventually spoke with an oncology social worker who assisted with the enrollment process to the Pfizer Oncology Together program. The patient was approved for this program and eligible to receive a free supply of palbociclib at no cost through the remaining portion of the calendar year. This situation, which could have become an extreme financial hardship for the patient, or the need for their oncologist to identify a secondary plan for treatment, was avoided with the help of Vivor. The financial assistance software tool was able to provide the healthcare team with critical information for financial support for this patient.

Utilize a Quality Metric to Identify and Evaluate Financial Assistance Need

The Commission on Cancer sets forth standards for cancer practices to ensure that they are treating cancer patients holistically. This includes Standard 5.2 Psychosocial Distress Screening, which implements a process to evaluate the psychosocial needs of a cancer patient through the use of a distress screening tool. There are a number of screening tools available, with the most common being the National Comprehensive Cancer Network (NCCN) Distress Thermometer, which provides a quick and brief opportunity to assess a cancer patient’s psychosocial distress. Although this tool does recognize “finances” and “having enough food” as practical concerns, it is designed as a multifactorial screening tool. Patients who express concerns in various domains on these screening tools require additional assessment.

The development of a comprehensive financial hardship assessment, including the incorporation of a quantifiable financial distress screening metric, is beneficial not only as a means to identify those cancer patients with greatest financial distress, but to also provide targeted financial assistance support at the earliest possible point during their cancer care. The benefits of implementing a comprehensive approach to financial distress screening, including the use of a financial distress measurement tool, was highlighted by Khera, Holland, and Griffin. They suggest that examining financial toxicity as an independent patient-reported outcome for all patients with cancer at multiple points during their treatment is highly advisable. In so doing, the cancer treatment team is better equipped to manage the “other” side effect of cancer care—financial hardship—by employing members of the financial assistance team to support those patients who appear to be at greatest risk for financial stress.

There are metrics available to support this process. The Comprehensive Score for Financial Toxicity, or COST tool is a validated 11-item questionnaire that was designed to provide a more thorough evaluation of the individual’s financial needs and potential stressors. Another financial hardship assessment tool is the Breast Cancer Finances Survey Inventory, a 42-item questionnaire assessing cancer-related economic burden including potential work-related changes, causes for financial hardship and out-of-pocket expenses. These are two example metrics that can help provide a clearer financial wellness picture of cancer patients in a healthcare setting.

As identified throughout this chapter, the need to develop strategies to reduce financial hardship for cancer patients can play an integral role in the effectiveness and success of their treatment. Utilizing a financial hardship screening process and combining it with a metric that can identify the greatest areas of financial stress will provide the healthcare organization with the information and resources to best serve those patients with the greatest needs.

The Impact of Financial Hardship on the Country

Cancer and the treatments prescribed can result in the loss of economic resources and opportunities for patients, families, employers, and society as a whole. These losses include financial loss, morbidity, reduced quality of life, and premature death. Excess financial burden for patients with cancer continues to grow as the costs of cancer care has increased dramatically in the past decades, with many new cancer drugs priced at $100,000 or higher annually. Emerging use of targeted therapies and their dramatic rise in cost over the past decade highlights the issue of increased out-of-pocket costs and financial burden for cancer patients. Compounding this problem, health insurance companies are increasingly shifting costs of care to patients through higher deductibles, copayments, and coinsurance. Because most health insurance plans require some form of cost sharing for drug therapy, patients and their families with health insurance may face a significant increase in medical bills. The overall economic impact of healthcare costs in this country is significant. During a 10-year period between 1999 and 2009, for example, US healthcare spending nearly doubled, climbing from $1.3 trillion to $2.5 trillion. In 2009, while the rest of the US economy plunged into a recession, healthcare costs, including cancer care expenses, grew by 4%. Sadly, on average, the United States spends about twice as much per person on healthcare compared to other industrialized countries, yet three-quarters of people surveyed by the National Opinion Resource Center do not think Americans get good value for their healthcare dollar. This is especially true among those who say they have experienced financial hardships due to healthcare costs. This is a very complex problem and needs to be examined on a societal level. Since most health insurance in the United States is employment-based in the working-age population, its relationship with the economic burden of cancer survivorship is complex. A cancer diagnosis can limit employment opportunities, which in turn may lead to a loss of health insurance. One must also take into consideration family obligations, and responsibilities for the patient may limit a caregiver’s ability to hold a full-time position in order to maintain health insurance through their employer. Conversely, working-age cancer patients who are unable to maintain employment, and their caregivers alike, create a decline in economic resources for employers and the country as a whole. For example, more than 90% of employed breast cancer survivors who had health insurance through their job stated they were working to maintain their health insurance coverage, which highlights the critical role employers play in the lives of cancer survivors.

Cancer Policy Advocacy

Many studies have exposed the impact of high cancer costs on cancer patients and healthcare systems alike. As identified throughout this chapter, patient financial hardship has taken many forms including loss of income, loss of health insurance, increased medical expenses, and increased debt. The financial hardship cancer care can cause for patients spills over to the healthcare organization, with increased costs for revenue cycle and sustained debt due to unpaid or delayed bill payments. More recently, there have been conversations throughout the country looking at ways to create cancer care reform that improves the quality of care provided and reduces resources utilized and costs incurred.

In 2019, a study entitled “ The impact of provider payment reforms and associated care delivery models on cost and quality in cancer care ” and published in the Public Library of Science conducted a thorough review of literature published in PubMed, Embase, and Cochrane library between 2007 and 2019. The primary goal of this study was to identify the impact of cancer care reform on resource use, cost, and quality of care, including clinical outcomes. Reports on some of the research follows:

Three reviewed studies reported the impact of provider payment reform implemented as part of the Medicare Modernization Act and determined it was effective in switching treatment patterns and chemotherapy use.

Eleven studies reported data on care delivery reforms, including adoption of clinical pathways and participation in patient-centered medical homes, accountable care organizations, or oncology care model programs. The adoption of clinical pathways was consistently associated with reductions in resource use and costs for a variety of cancer types. The impact of the Community Oncology Medical Home program on cancer care spending was compared with Fee for Service Medicare beneficiaries diagnosed with various cancer types. Implementing a patient-centered medical home was found to be associated with significantly reduced emergency department visits resulting in a cost savings per patient. The evaluations of accountable care organizations in cancer care found mixed results, with Medicare Pioneer accountable care organizations demonstrating some reduction in utilization of certain low-value services in the first year of implementation.

Findings from this thorough study of payment reform and care delivery research suggest promising improvements in resource utilization and cost control after the transition to prospective payment models. However further research is needed to apply more robust measures of performance and quality to ensure that providers are delivering high-value care to their patients while reducing costs.


The diagnosis of breast cancer can bring with it serious financial ramifications. Financial hardship, also known as financial toxicity or financial distress, is a real side effect of cancer care. Because financial hardship is a potential outcome, it should be evaluated and addressed, optimally during the earliest stages of a cancer patient’s care. Research demonstrates the great impact financial hardship has on the overall quality and effectiveness of care cancer patients receive. Financial hardship can be very complicated and multifaceted, and is best approached by a multidisciplinary team. This chapter provided a wide range of causes of financial hardship but also explores different techniques to manage it, including enlisting different members of the cancer care and financial assistance teams.

Implementing a multidisciplinary approach will allow for a more thorough investigation of the causes of financial hardship for cancer patients. After identifying these causes, this chapter has also provided programs and resources that can be utilized to reduce financial hardship or at least make it more manageable for the cancer patient. By doing this, the goals are to improve the cancer care experience, increase adherence to cancer care treatment, and, most importantly, reduce the distress patients may experience from costs associated with their cancer care journeys. A collaborative effort employed to reduce financial hardship will help breast cancer patients receive the most appropriate treatment and improve their quality outcomes.


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Apr 6, 2024 | Posted by in ONCOLOGY | Comments Off on Coping With the High Cost of Cancer

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