ASC CAN conducted the online survey from March 18–April 14, 2024, among 1,284 U.S. patients and survivors who had been diagnosed with or treated for cancer in the past seven years. Of those, 599 have had medical debt related to their cancer and 456 currently held medical debt related to their cancer at the time of the survey. Half of those have debt of $5,000 or higher, and 35% have been in debt for more than three years. The following findings (https://www.fightcancer.org/sites/default/files/national_documents/sv_debt_summary_24.pdf) relate to the 599 individuals who have or had had cancer-related medical debt.

The Data on Debt

Nearly all (98%) were insured at the time when the debt was incurred, most commonly by a high deductible health plan without a health savings account (34%). Two-thirds (67%) expected their healthcare policy to cover more of their cancer care costs than it did.

The most common sources of debt were unpaid medical bills (72%) and payment plans (45%) for healthcare providers, followed by an unpaid balance to a hospital (76%). Surgery (51%), imaging (50%), and diagnostic tests (48%) were the most significant sources of treatment-related debt, followed by chemotherapy (39%). Thirty percent of the respondents said they would have changed something about their treatment if they had known it would result in medical debt.

“I’ve had cancer three times in less than four years. First was breast cancer. When I received the bill for surgery, I immediately stopped the post-surgery radiation treatment before it was scheduled to stop because of my debt for the surgery,” a respondent from New York said (https://www.fightcancer.org/sites/default/files/national_documents/sv_debt_summary_24.pdf).

Financial Health Literacy and Racial Disparities

Financial assistance is often available, but only 36% said they were offered or applied for it and 68% of those who applied successfully received it. Of those who were aware of financial assistance, 41% learned about it from their provider, 35% found it themselves, and 22% discovered it through another resource. Thirty percent of who were not aware of assistance programs said they would have changed something about their cancer treatment if they had known.

Black and Hispanic respondents were about twice as likely (13% and 14%, respectively) as White respondents to report being denied care because of their debt. Hispanic respondents were twice as likely to report becoming ill because of avoiding care as a result of their medical debt (18% compared to 9% of non-Hispanic respondents). Black respondents were more likely to report being contacted by collection agencies (66%) and to feel harassed by them (44%).

Medical Debt’s Mental, Emotional, and Behavioral Effects

Nearly all (97%) of the respondents reported being concerned about their ability to afford their healthcare costs, with 57% saying they were “very concerned.” Similarly, 98% said they are concerned about incurring additional debt when they use the healthcare system, with 63% reporting being “very concerned.” 

“My medical debt has caused depression, anxiety, and panic attacks. I’m reluctant to pursue care for other health concerns. I lost my home due to foreclosure and lay awake at night in fear, wondering what to do,” a Wisconsin respondent said (https://www.fightcancer.org/sites/default/files/national_documents/sv_debt_summary_24.pdf).

Those with cancer-related medical debt were three times more likely to be behind on recommended cancer screenings (18% versus 5%), 27% said they have gone without adequate food, and 25% have skipped or delayed care.

“I have cancer again and have chosen to not go through treatment again because I have had to choose between rent and food over medical care,” a respondent from Texas said (https://www.fightcancer.org/sites/default/files/national_documents/sv_debt_summary_24.pdf).

Forty-seven percent reported that medical debt had a negative impact on their mental health, and 27% said they cannot purchase adequate food because of their debt. Another 27% said they were not as healthy as they wanted because of the effect of their medical debt. Nineteen percent said that they have avoided socializing with friends or family because of their debt. 

How to Make a Difference

Preventing cancer-related medical debt: Respondents ranked the following strategies as most helpful: 

• Ensuring patients receive the full benefit of drug discount and assistance programs (62%)
• Increasing access to provider assistance programs (61%) and patient navigators (59%)
• Directing patients who need it to financial assistance before they begin care (52%)
• Ensuring patients don’t receive surprise medical bills (45%) 

Helping those who have medical debt: Respondents ranked the following strategies as most useful:

• Prohibiting predatory and discriminatory debt collection practices (54%) 
• Removing medical debt as a factor in evaluating an individual’s creditworthiness (51%) 
• Limiting the interest rates charged on medical debt (47%) 
• Minimizing sales of medical debt to medical debt collectors (46%) 

“I can’t afford all the medications my doctor has prescribed for me, so I stopped picking them up at the pharmacy. I canceled appointments because I couldn’t afford the copay or gas to get there. This has affected both my physical and mental health,” a Connecticut respondent said (https://www.fightcancer.org/sites/default/files/national_documents/sv_debt_summary_24.pdf).

To make a difference, oncology nurses can advocate for legislation and policies that lower costs of cancer care, support patients who are experiencing financial toxicity (see sidebar), and raise awareness about financial barriers to accessing cancer care (https://www.ons.org/make-difference/ons-center-advocacy-and-health-policy/position-statements/access-quality-cancer).