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The Costs of Cancer Among Uninsured People

October 19, 2022

As a leading cause of death and disease in the United States (U.S), cancer takes a huge toll on the health of patients and survivors, and also has a tremendous impact on their finances. The costs of cancer do not impact all patients equally. Evidence consistently shows that certain factors – like race/ethnicity, health insurance status, income and where a person lives – impact cancer diagnosis, treatment, survival and financial hardship that people with cancer and their families experience. This fact sheet explores how the costs of cancer impact uninsured people in the U.S.,1 their families and how to reduce these costs.

People facing cancer and survivors who are uninsured – or don’t have health insurance – have high health care costs, poor access to care, poor cancer outcomes and experience a great amount of financial hardship.

Overall, uninsured cancer survivors have more than double the health care costs as uninsured people who have not been diagnosed with cancer.2

Annual Average Health Care Expenditures for Uninsured Individuals

Source: Agency for Healthcare Research and Quality: Medical Expenditure Panel Survey, 2018-2019. Public-use data file and documentation. Retrieved from: https://meps.ahrq.gov/data_stats/download_data_files_detail.jsp?cboPufNumber=HC-216. July 2022.

The Costs of Cancer in My Own Words

Tim Floyd Guntown, Mississippi

Tim Floyd was living in Mississippi and working in construction in 2019 when he saved up enough money to go to a doctor because he noticed a lump on the side of his throat. The doctor said he had enlarged lymph nodes and gave him medication. A year later, he went to the doctor again because the lump had grown and was interfering with his singing. Tim’s doctor ordered an ultrasound and a biopsy, and after a few weeks, Tim found out that he had stage II Hodgkin lymphoma.

In the years prior to his diagnosis, Tim was unable to obtain preventive screenings and doctor visits. He had to have his leg amputated below the knee due to a sore that, after five years, would not heal. It was while teaching himself to walk again that he felt a lump on his neck. Tim continues to incur medical debt and is billed for oncology tests and doctor visits. He is currently $5,000 in debt. Because of his ongoing health issues, Tim is currently unable to work and cannot foresee a time when he might be able to pay off his debt. He gets calls and collection notices but knows he has no way to pay. Tim is waiting to hear back on a hearing regarding his fourth attempt to qualify for Social Security disability.

Tim really likes his doctor but can only afford to see him once a year to get his prescriptions refilled. Each visit costs him $60 and cash up front. He knows his doctor is hesitant to order anything extra. So, Tim often doesn’t get the type of tests and screenings that someone with insurance or no medical debt would have access to. Thankfully, as of August 2022, Tim is considered cancer free. Without Medicaid expansion in his home state, he and 200,000 Mississippians must continue to find ways to access the care they need without insurance.

Lack of Insurance and the Impact on Cancer Survival

It is a well-established fact that health insurance is an important factor in a person with cancer’s access to care, and their health outcomes – and therefore not having health insurance is harmful to someone facing cancer.

  • Uninsured individuals are less likely to have a usual source of medical care or receive preventive services and cancer screenings.3
  • People without health insurance are more likely to be diagnosed with cancer at a late stage, when the disease is harder to treat, more costly and more difficult to survive.4
  • An uninsured patient diagnosed with stage I cancer is less likely to survive their cancer than a privately insured patient with stage II disease – showing the huge importance of having health insurance in surviving cancer.5

Having insurance provides access to early detection and screenings – allowing you to seek care at an earlier stage. My recent heart problems are a result of my cancer treatment. Having insurance would have kept me from going down a spiral. If you don’t have insurance, they do the cheapest thing to get you by. They will not heal you; they will help you get by. With insurance, they would have taken a biopsy on the lump in my neck. I was a stage 1 when they finally did the biopsy and was a stage 2 when I started treatment.

Tim Floyd, Mississippi

Lack of Insurance and the Impact on Cancer Survival

The high costs of cancer have many adverse impacts, and uninsured people with cancer and survivors report more financial hardship than their counterparts who are insured.

Research shows that among uninsured individuals ages 18-64 with a history of cancer:6

ACS CAN Supports Policies That Will Reduce the Costs of Cancer for Uninsured People

The American Cancer Society Cancer Action Network (ACS CAN) wants to make sure that everyone has a fair and just opportunity to prevent, detect, treat and survive cancer. To reduce the costs of cancer among uninsured people, ACS CAN supports:

  • Expanding Medicaid in the 12 remaining states that have not done so. The health coverage provided by Medicaid helps to improve outcomes and reduce the burden of cancer by offering access to prevention services and; timely cancer screening and early detection services, as well as affordable treatment services and care. In 12 states, there are more than 2.2 million people who should be able to see a doctor but cannot. They don’t qualify for Medicaid, but also don’t fall into the income bracket that allows them to receive marketplace subsidies. This is the Medicaid coverage gap – 60% of these uninsured individuals are people of color, and the vast majority live in the American South, which includes a large Black/African American population. All states should expand Medicaid, and Congress must close the coverage gap for lower-income Americans who live in states that have failed to expand.
  • Making expanded marketplace subsidies permanent. The recent Inflation Reduction Act has extended increased subsidies for three more years (until December 31, 2025), making premiums and cost sharing more affordable for millions of individuals. However, this is not permanent. Individuals needing insurance coverage through the marketplace need these subsidies to be permanent so their costs will stay affordable and they aren’t in danger of losing coverage.
  • Limiting the sale of noncomprehensive insurance plans. Short-term limited duration (STLD) health care plans often exclude important benefits, require high out-of-pocket costs and in general provide severely inadequate coverage. However, their cheaper premiums often attract enrollees who are unaware they are enrolling in a noncomprehensive plan. ACS CAN urges policymakers to consider prohibiting or limiting the availability of short-term limited duration and other non-ACA compliant plans, or requiring these plans to follow ACA rules.
  • Addressing and preventing medical debt. Many patients with complex diseases like cancer find it hard to afford their treatments, and incur medical debt when they are unable to pay for treatments or other expenses immediately. People living in rural areas, in the South and in Medicaid non-expansion states are more likely to have significant medical debt that can impact their lives and families for decades. ACS CAN supports policies that prevent and address medical debt.
  • Improving access to and ensuring long-term sustainable payment of patient navigation services. Patient navigation has become increasingly recognized for improving patient outcomes, reducing unnecessary treatment costs and increasing patient satisfaction. However, patient navigation is still absent or limited in many cancer programs and hospital settings due to cost concerns and a lack of long-term funding to pay for these services. Instead, patient navigation programs are often financed via short-term funding like private or governmental grants. ACS CAN supports and advocates to improve health equity by increasing access to quality cancer care among communities that have been under-resourced by extending the reach of navigation services. The expansion and sustainability of patient navigation services will only be achieved by ensuring that these services can be paid for the long term, thereby ensuring everyone everywhere will have access to the patient navigation services needed to ensure better patient experience and outcome due to a cancer diagnosis.

References

  1. Note that data sources have varying definitions of uninsured, so in some cases this term may include individuals enrolled in noncomprehensive insurance policies, like short-term limited duration plans or excepted benefit plans.

  2. Agency for Healthcare Research and Quality: Medical Expenditure Panel Survey, 2018-2019. Public-use data file and documentation. Retrieved from: https://meps.ahrq.gov/data_stats/download_data_files_detail.jsp?cboPufNumber=HC-216. July 2022.

  3. Ward, E., et al, “Association of Insurance with Cancer Care Utilization and Outcomes, CA: A Cancer Journal for Clinicians 58:1 (Jan./Feb. 2008).

  4. Zhao, J., Han, X., Nogueira, L., Fedewa, S.A., Jemal, A., Halpern, M.T. and Yabroff, K.R. (2022), Health insurance status and cancer stage at diagnosis and survival in the United States. CA A Cancer J Clin. https://doi.org/10.3322/caac.21732.

  5. Ibid.

  6. Note that all differences between populations presented in this graphic are statistically significant. Source for all data in this section: National Center for Health Statistics: National Health Interview Survey, 2019-2020. Public-use data file and documentation. Retrieved from: https://www.cdc.gov/nchs/nhis/2020nhis.htm. July 2022.

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Support for this project was provided by Bristol Myers Squib.