Overview:
The American Cancer Society Cancer Action Network (ACS CAN) empowers advocates across the country to make their voices heard and influence evidence-based public policy change, as well as legislative and regulatory solutions that will reduce the cancer burden. As part of this effort, ACS CAN deploys surveys to better understand cancer patient and survivor experiences and perspectives, through our Survivor Views research panel. The panel is a group of cancer patients and survivors who respond to regular surveys and provide important insights to support ACS CAN’s advocacy work at all levels of government.
This survey is the second in a series to explores the impacts of Affordable Care Act (ACA) enhanced premium tax credits on cancer patients and survivors. The web-based survey was conducted among 3,565n cancer patients and survivors nationwide who have been diagnosed with or treated for cancer in the last seven years, including 1,324n who have been enrolled in a marketplace plan and 725n who have benefitted from subsidies. This survey also included 624n self-employed respondents who are more likely to rely on privately-purchased health coverage.
Key Findings:
- 86% of those receiving subsidies say they would have difficulty getting the care they need without the enhanced premium tax credits, and 35% say it would be extremely difficult.
- 50% say they could not have afforded to enroll in a health plan without the enhanced premium tax credits.
- 60% of those enrolled in ACA marketplace plans choose them because they don’t have access to an employer-provided plan.
- 81% of self-employed cancer patients and survivors are concerned about their ability to pay for care, and nearly half (47%) have skipped or delayed recommended care due to difficulty paying.
- Many cancer patients and survivors (63%) are not aware of the ACA premium tax credits and just 25% are aware they are currently set to expire by the end of 2025.
Detailed Survey Findings:
Cost is a Significant Burden for Cancer Patients and Survivors
Seventy-five percent of cancer patients and survivors surveyed are concerned about their ability to pay for current or future health care costs related to their cancer, and 37% are very concerned. Seventy-four percent are concerned about accumulating medical debt in order to pay for their cancer-related care (41% are very concerned about accumulating debt). Over one-third (38%) report skipping or delaying recommended health care due to difficulty paying for cancer-related care. Fourteen percent report that cost is the most important factor influencing their treatment decisions, while a majority (52%) say cost is among the factors influencing their treatment decisions. These results echo the findings of previous Survivor Views surveys exploring financial toxicity and medical debt related to the costs of cancer.
Marketplace Plans are Chosen for Affordability and are Crucial to Those Without Access to Employer-Provided Coverage
Affordability is the top reason given for enrolling in privately-purchased Affordable Care Act marketplace plans. Among the 1,324 survey respondents who have been enrolled in a ACA marketplace health plan, 67% said a main reason for choosing a marketplace plan was that it was the most affordable option available to them. Thirty-five percent report choosing a marketplace plan because it offered better coverage than other available options.
Another significant reason for choosing a marketplace plan, cited by a combined 60%, is lack of access to an employer-sponsored plan, including 27% who are self-employed, 15% not eligible for an employer-sponsored plan, 13% who left or changed their job due to their cancer, and 5% who are caregivers or otherwise do not work enough hours to be eligible for an employer sponsored plan. The following comment from a survey respondent sheds light on the experience of many cancer patients who are unable to work enough hours to qualify for employer health benefits due to their cancer:
“Before I was even diagnosed with cancer I became too ill to work my normal schedule. Within a couple months I was unemployed and diagnosed and without the tax credits for the marketplace plan, I definitely would not have been able to afford treatment at all and would have had to go without the care that saved my life.”
Another respondent highlights the concerns of self-employed cancer patients and those working for small businesses:
“When I was diagnosed with cancer I worked for a small business with only 4 employees and the owner did not provide any health care benefits. If it wasn't for the ACA I would not have been able to afford my cancer surgery and probably would not be alive today.”
Cancer patients and survivors who were self-employed at the time of their cancer diagnosis report the highest levels of concern about their ability to pay for their cancer-related health care. Among this group, 81% are concerned about their ability to pay (42% very concerned) and 78% are concerned about accumulating medical debt related to their cancer (44% very concerned). They are also more likely than others to report skipping or delaying recommended care due to difficulty paying for their cancer-related care (47%).
Awareness of Premium Tax Credits is Low; Even Fewer Aware of Enhanced Tax Credits Expiring
Fewer than half (42%) of cancer patients and survivors surveyed are aware that some people enrolled in marketplace plans qualify for an Affordable Care Act premium tax credit and just 37% are aware that Congress made the premium tax credits more generous beginning in 2021. Fewer still (25%) are aware that these enhanced premium tax credits are currently set to expire at the end of 2025. Awareness of the expiring enhanced premium tax credits is low even among those enrolled in marketplace plans (32%) and those currently receiving premium tax credits (43%).
Expiration of Enhanced Premium Tax Credits Would Cause Significant Financial and Health Consequences
Half (50%) of those who recall benefitting from the ACA enhanced premium tax credits say they would not have been able to afford to enroll in a health care plan without them and another 13% are unsure.
Among those currently enrolled who recall receiving enhanced premium tax credits, 86% say it would be difficult to get the care they need if the enhanced tax credits expire and are no longer available to help lower their health premiums. One-quarter (27%) say it would be very difficult to get their care without the enhanced tax credits and 35% say it would be extremely difficult.
While losing the enhanced premium tax credits would be a crisis for many in active treatment, the quote below highlights the grave concern also faced by those in survivorship:
“As a cancer survivor, you are constantly under surveillance. I survived stage 3C ovarian cancer. I am also BRACA positive. Both of my sisters passed away from breast cancer. If I lost my Marketplace insurance I have no idea what I would do. I would definitely not be able to afford the fight any longer.”
Those receiving enhanced premium tax credits would consider resorting to a number of actions that could have negative health or financial impacts if the enhanced premium tax credits expire. Eight-in-ten (81%) would consider enrolling in a plan with a much higher deductible in order to afford their monthly premium, and 77% would consider a change in employment status such as returning to work after retirement or changing jobs in order to get employer-sponsored coverage.
Over two-thirds (69%) would consider enrolling in a cheaper (non-marketplace) plan with limited coverage such as a short term or catastrophic plan that could expose them to greater financial risk, and 62% would consider withdrawing from their retirement or savings to afford their current coverage. Sixty percent would consider avoiding recommended care to reduce costs, and 58% would considering accumulating debt in order to afford their current coverage.
Methodology:
ACS CAN’s Survivor Views research initiative was designed to support the organization’s efforts to end suffering and death from cancer through public policy advocacy. Data provided by cancer patients and survivors as part of this project allows for a greater understanding of their experiences and opinions on cancer-related issues and gives voice to cancer patients and survivors in the shaping and advocating of public policies that help prevent, detect, and treat cancer and promote a more positive quality of life for those impacted.
To ensure the protection of all participants in this initiative all research protocols, questionnaires, and communications are reviewed by the Morehouse School of Medicine Institutional Review Board.
The survey population is comprised of individuals who meet the following criteria:
- Diagnosed with and/or treated for cancer within the last seven years
- Over the age of 18 (parents of childhood cancer survivors were invited to participate on behalf of their minor children)
- Reside in the US or US territories
Survivor Views participants are invited to participate through email, direct mail, social media, and outreach to communities and partners engaged with cancer patients and survivors. Those who agree to participate after reviewing the informed consent information are invited to join the Survivor View’s research cohort and participate in future surveys. This survey also includes cancer patients and survivors nationwide from probability and non-probability panels. The data for this survey were collected between November 6-26, 2024. A total of 3,565 participants responded to the survey.
About ACS CAN
The American Cancer Society Cancer Action Network (ACS CAN) advocates for evidence-based public policies to reduce the cancer burden for everyone. We engage our volunteers across the country to make their voices heard by policymakers at every level of government. We believe everyone should have a fair and just opportunity to prevent, detect, treat, and survive cancer. Since 2001, as the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN has successfully advocated for billions of dollars in cancer research funding, expanded access to quality affordable health care, and advanced proven tobacco control measures. We stand with our volunteers, working to make cancer a top priority for policymakers in cities, states and our nation’s capital. Join the fight by visiting www.fightcancer.org.
