Cancer is one of the most expensive medical conditions to treat in the U.S. As a result, patients, survivors, and caregivers—already challenged by the physical and emotional burdens of cancer—often face growing medical debt. The high cost of care that leads to this medical debt adds further financial stress and burden, or financial toxicity—the last thing a patient, caregiver, or their family needs.
Things that put people at risk of financial toxicity:
- Type of health insurance or not having any health insurance (and surmounting costs which factor in premiums, deductibles, out-of-pocket max, co-insurance percentage, etc.)
- Cancer type, its severity, and treatment received
- Age, race and ethnicity, income, and whether the patient or caregiver has a job
Advancements in blood cancer therapy are dramatically impacting the range of treatments available to patients. As a result, people living with or in remission from cancer are living longer and need ongoing healthcare management—all while possibly accumulating medical debt.
And as patients and/or caregivers pay more and more out of their own pockets for care, financial toxicity has become another unbearable side effect of cancer, affecting their financial future and their health.
- 42% of patients exhaust their entire life savings within two years of a cancer diagnosis.
- One in four cancer patients delay medical care, go without care, or alter their cancer treatment because of cost, affecting their outcomes.
We’ve got to solve this.
Tackling the Issue of Medical Debt and Inequity
One arm of The Leukemia & Lymphoma Society’s (LLS) mission is to study the issues of healthcare and find ways to help patients and caregivers through policymaking and advocacy.
LLS’s Equity in Access Research Program awards multi-year grants to researchers investigating barriers that keep people from accessing blood cancer treatment and care. The grantees must not only identify the obstacles but also find actionable solutions that can be implemented through policy reform and changes in healthcare practice—so that all patients can get the care they need and deserve, regardless of income, race, language, or geographic location.
Launched in 2022, the program’s initial area of focus has been on health insurance and how it affects access to care and survival rates.
What One Research Team Has Found
Supported by the Equity in Access Research Program, Helen Parsons, PhD, a health services researcher at the University of Minnesota, presented findings at the recent ASCO Annual Meeting on behalf of her research team (including Co-Principal Investigators Robin Yabroff, PhD, and Cathy Bradley, PhD).
This study, titled “The Impossible Choice: The Role of Insurance Design on Financial Toxicity and Access to Care for Individuals with Blood Cancer,” examines the relationship between health insurance and financial hardship among patients with blood cancer, compared to those with solid tumors or no history of cancer.
“While cancer can impact anyone, the unfortunate reality is that equitable access to treatment and care is out of reach for many,” said Eric Cooks, PhD, Senior Director, Equity in Access Research Program at LLS. “The work being conducted by Drs. Parsons, Yabroff, and Bradley is critical to advancing our understanding of how increased cost-sharing for cancer care affects patient outcomes and financial security, which pose a higher financial risk to working-aged (ages 22 to 63) adults undergoing treatment for blood cancer.”
Three Big Findings—So Far
Dr. Parsons’ team continues to build on their findings, but to date, they’ve found:
1. Blood cancers are particularly expensive to treat
While survival following blood cancer diagnoses has increased substantially, they remain some of the most expensive cancers to treat, leading to thousands in out-of-pocket costs for patients and their families.
2. The financial impact on working-aged adults is growing
Current estimates of healthcare spending and out-of-pocket burden rely heavily on data from older adults—which may not reflect treatment patterns in working-aged adults, given the rise in use of novel therapies and increased incidence of cancer at younger ages. While out-of-pocket costs remain a barrier to access for anyone diagnosed with cancer, these costs present unique obstacles to working-aged adults who rely on their employer's health insurance for cancer treatment, and those who have historically experienced challenges remaining employed and maintaining health insurance after their diagnosis.
3. Private insurance doesn’t necessarily prevent financial toxicity
More and more, there is a growing financial burden on working-aged adults diagnosed with cancer, even when they have private insurance (as opposed to being uninsured or holding public insurance, such as Medicare/Medicaid). This burden is even more significant for patients with lymphoma.
Dr. Parsons’ team used data from the Colorado Cancer Registry linked to All Payer Claims data from 2012 to 2021 to look at healthcare spending in the six months including and after a cancer diagnosis among working-aged survivors. Initial findings demonstrate that the total healthcare spending after a cancer diagnosis is substantial and was highest among those insured by private non-HMO plans—particularly for those diagnosed with lymphoma, who typically spent more than $130,000 during those six months. Out-of-pocket costs were also high across the board—and again were highest for those diagnosed with lymphoma ($3,966 during the study period).
“We found continued substantial financial burden for working-aged individuals diagnosed with cancer, with median out-of-pocket costs exceeding $500 per month in the six months after diagnosis,” said Dr. Parsons. “This is not sustainable and may place many patients and their families in the unfortunate position of needing to choose between needed medical care and paying other bills for food, rent, transportation, and other necessities.”
Dr. Parsons and her colleagues will continue to build on their work by examining the relationship between health insurance type and cancer care outcomes and whether these relationships vary by geography and patient race/ethnicity.
“This work highlights the growing financial burden for working-aged people diagnosed with cancer and the necessity of developing health policy to address financial hardship,” Dr. Parsons said.
LLS is constantly working to rein in the costs of cancer care by identifying the areas where help is needed and determining how we can make an impact through policy recommendations and advocacy.
If you or someone you know is struggling with medical debt, visit our Medical Debt Case Management page for help.
Learn more about what we’re doing to reign in the cost of cancer care.