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November 2, 2021

The $21B burden of cancer care

Daily Briefing

    As the cost of cancer care increases, patients are shouldering a huge economic burden. Patient out-of-pocket (OOP) and time costs reached over $21 billion in 2019, according to a new report from the National Cancer Institute (NCI), American Cancer Society, CDC, and the North American Association of Central Cancer Registries.

    Slide deck: How to help patients overcome the financial toxicity of cancer

    Cancer patients face billions in out-of-pocket and time costs for care

    According to the report, cancer patients are facing increasingly high costs of care through higher deductibles, copayments, and coinsurance. In addition, patients experience substantial time costs as they travel, wait for, and receive care, which can lead to further economic burdens.

    To estimate the OOP and time costs associated with cancer care among adults, researchers analyzed data from Surveillance, Epidemiology, and End Results (SEER) Medicare database and the Medical Expenditure Panel Survey (MEPS).

    Overall, the researchers found that the national patient economic burden of cancer care was $21.09 billion. Of this, $16.22 billion was from OOP costs, and $4.87 billion was from patient time costs.

    The researchers also saw significant variations in economic burden by cancer type, reflecting differences in treatment intensity, duration, and survival. In 2019, cancers with higher prevalence had the highest national OOP costs, including:

    • Breast: $3.14 billion
    • Prostate: $2.26 billion
    • Colorectal: $1.46 billion
    • Lung: $1.35 billion

    In addition, the researchers found that cancer patients under 65 paid more in OOP and time costs than patients ages 65 and older. In the first year of diagnosis, the average OOP cost was $2,700 and the average time cost was $279.10 for patients ages 65 and older. In comparison, patients ages 18 to 64 paid an average of $5,900 in OOP costs and $304.30 in time costs in their first year of diagnosis.


    "As the costs of cancer treatment continue to rise, greater attention to addressing patient medical financial hardship, including difficulty paying medical bills, high levels of financial distress, and delaying care or forgoing care altogether because of cost, is warranted," said Karen Knudsen, CEO of the American Cancer Society. "These findings can help inform efforts to minimize the patient economic burden of cancer, and specific estimates may be useful in studies of the cost-effectiveness of interventions related to cancer prevention, diagnosis, treatment, and survivorship care."

    Separately, Norman Sharpless, director of NCI, said, "In the modern era of cancer research, we have to think about treatment costs and how they impact our patients. As exciting and promising as cancer research is, we are keenly aware of the issue of financial toxicity for these patients."

    He added, "Therapies that are highly effective are no doubt good news, but if they are unaffordable it is not the total kind of progress we would like to see. Finding ways to ensure that not just some, but all, patients get access to therapies that are beneficial to them is an important goal we must continue to strive for in the cancer community. This report will help guide us toward achieving that goal.”

    According to the Washington Post, health officials also noted that prevention could help alleviate the financial burden of cancer care for many patients.

    "The cost of having cancer is enormous and an extreme burden on people and families, particularly for those who are uninsured or underinsured," said Karen Hacker, director of CDC’s National Center for Chronic Disease Prevention and Health Promotion. "Prevention is key to lowering out-of-pocket costs. ... Access to the right cancer screening tests at the right time is an important step toward health equity, and we must work to make this a reality." (Blakemore, Washington Post, 10/30; Inserro, American Journal of Managed Care, 10/29; Yabroff et al., Journal of the National Cancer Institute, 10/26; National Cancer Institute news release, 10/26)


    Advisory Board's take

    Cancer is a financial nightmare, but it doesn't have to be—4 ways to combat financial toxicity.

    De SauletBy Deirdre Saulet, Expert Partner

    This new study adds to the growing amount of evidence showing the financial toxicity of cancer. In particular, it bolsters findings from a study which found that cancer patients spend an average of 11% of their total household income on expenses related to their treatment (with some patients spending up to a third of their income).

    Financial toxicity is not only devastating for the patient and their family, but also for the patient's health and outcomes. Another study found that financial insolvency is a clear risk factor for mortality—cancer patients who declared bankruptcy had a 79% greater risk of death than those who had not. Other research has found that patients experiencing financial distress also report poorer physical health, mental health, and satisfaction with their relationships.

    Considering the ample uncertainty and distress associated with a cancer diagnosis, cancer programs should focus on immediate solutions to help patients understand the cost of their care. Our research over the years has outlined the key elements of a successful financial navigation program. In light of this study’s findings, here are four key opportunities to reduce financial toxicity and improve patient quality of life.

    1. Detect cancer early by doubling down on appropriate screenings.

      Since the onset of the Covid-19 pandemic, cancer screenings have declined substantially—so much so that cancer programs are regularly reporting to us that they’re already seeing an increased percentage of patients diagnosed with advanced disease. Not only does this impact health outcomes, but, as this study points out, it also tends to increase patients’ out-of-pocket costs. Never has it been more critical to reach out to and make connections with referring providers and patients, especially underserved populations, for appropriate screenings.

    2. Don't just connect patients to financial navigators—ensure patients clearly understand their insurance benefits and potential out-of-pocket costs.

      Financial navigators are becoming a critical member of the cancer care team. And they should be—financial navigators can help patients understand the costs of care, optimize insurance coverage for patients, and identify resources, such as patient assistance programs, to help offset out-of-pocket costs. Some of the most successful programs we’ve seen standardized a one-on-one meeting with a financial navigator for all new patient appointments and/or hardwire multiple financial checkpoints into the patient's care pathway, especially at times when patients are likely to have financial questions or challenges (such as when they receive their first bill or undergo a treatment change).

      Because a significant number of Americans lack basic insurance knowledge, progressive navigation programs should review each patient's insurance benefits prior to meeting with them. This can guide the conversation on which costs will be covered while providing an estimate of what the patient may owe.

    3. Destigmatize and encourage conversations about costs with patients.

      A patient's financial situation is part of their overall health, and this should be understood by all physicians. And while not every physician will agree, there is no denying the stress and increased mortality risk associated with financial toxicity. If comfortable, doctors can bridge the financial gap by talking with patients about costs. At the least, they should all aim to destigmatize conversations about finances by connecting patients with financial navigators.

    4. Improve end-of-life care by discussing individual goals and integrating palliative care earlier.
    5. The last year of life for cancer patients is the most expensive—both for the overall system and for the patient and their families. Aggressive end-of-life care that provides no clinical benefit, such as chemotherapy and hospitalizations in the final weeks of life, contributes disproportionately to unnecessary costs. Additionally, it can further damage the patient and family’s experience. While improving end-of-life care has been a longstanding priority in the oncology community, it remains challenging for many reasons—operational, clinical, and cultural. To make sure patients’ goals for care are being surfaced and met, programs should focus on empowering patients and families to ask questions, training the entire care team on the importance of these conversations, and integrating palliative care earlier.

    We have developed best practices about how programs can help patients manage their costs (while still protecting program's margins). To learn more, download our research report on Cancer Patient Financial Navigation. And be sure to look at the appendix which contains sample scripting for financial conversations and sample patient-focused worksheets and forms.

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