Healthcare Red Tape Means People May Skip or Delay Cancer Treatment
If you’ve been diagnosed with breast cancer, you’ve probably spent hours doing administrative tasks associated with your care: filling out insurance forms, reviewing bills, or figuring out what to do if your claim is denied.
When people have to do all this paperwork, they’re more likely to skip or delay cancer treatment, according to a study.
The research was published online on Aug. 30, 2023, by the journal Cancer Epidemiology, Biomarkers & Prevention. Read the abstract of “Administrative Burden Associated with Cost-Related Delays in Care in U.S. Cancer Patients.”
Cancer care paperwork
Research has shown that U.S. healthcare insurance payment and billing processes are time-consuming and costly for both patients and doctors. It’s also well-known that being diagnosed with cancer, especially breast cancer, can cause huge financial problems for many people.
After a cancer diagnosis, people have to receive treatment, deal with side effects, and cope with all the stress and upheaval cancer brings. They also have to do a number of administrative tasks to make sure their health insurance company pays its portion of the cost of care. These tasks include:
providing documentation to prove they’re eligible for coverage
figuring out the complex billing and payment policies
making sure they get any necessary pre-authorizations
appealing payment denials
Listen to The Breastcancer.org Podcast episode featuring Joanna Morales and Loriana Hernandez-Aldama discussing the problems people face when paying for cancer care, including all the administrative tasks that have to be done.
“It’s fairly unique to our U.S. healthcare system for the consumer to be responsible for acquiring the knowledge and skills needed to effectively use those goods or services and to ensure they’re of high quality,” lead author Meredith Doherty, PhD, LCSW, said in a statement. Dr. Doherty is assistant professor of social policy and practice at the University of Pennsylvania. “In the United States, healthcare is largely treated as a consumer product, so the onus is on the consumer.”
Dr. Doherty read a study showing that U.S. healthcare consumers felt that administrative burdens significantly affected their care and decided to further investigate the relationship between administrative tasks and treatment delays or non-adherence. Non-adherence is the term doctors use when people don’t complete their full treatment course.
About the study
The researchers analyzed answers to a survey done by CancerCare, a national non-profit organization that works to meet the psychosocial needs of people affected by cancer.
The people who answered the survey:
had a history of cancer, excluding non-melanoma skin cancer
had health insurance
were at least 25 years old
The study included an even proportion of people from each region of the United States and a representative proportion of the most and least common cancers.
In total, 510 people completed the survey:
65% were women
58% were older than 55
71% were white
22% had early-stage breast cancer
10% had prostate cancer
8% had colorectal cancer
55% had either Medicare, Medicaid, or both as their health insurance
37% had employer-sponsored insurance
The survey asked how often people did five administrative tasks related to cancer care. About 20% of the people said they sometimes, often, or always did the tasks:
20% estimated their out-of-pocket costs before agreeing to a treatment their doctor recommended
17% appealed the denial of benefits from their health insurance companies
28% found out their out-of-pocket costs before filling a prescription
18% asked their health insurance companies for help in understanding their coverage
20% found out their out-of-pocket costs before having lab tests or scans
Overall, 33% of the people said they at least sometimes delayed or skipped some treatments to lower their costs:
23% postponed or skipped doctor appointments
23% delayed or skipped follow-up testing
19% postponed or skipped blood work
19% said they cut pills in half
20% skipped doses of prescribed medicines
The researchers’ analysis found that people who had to do administrative tasks were 18% more likely to skip or delay treatment than people who didn’t have to do these types of tasks. Delaying or skipping treatment was 32% more likely for each additional task a person had to do.
Age, race and ethnicity, and monthly out-of-pocket costs were more tightly linked to delaying or skipping treatment than doing administrative tasks. Still, Black people with cancer were more likely to have to do administrative tasks and then delay or skip treatment.
The researchers pointed out that the results suggest doing administrative tasks may make existing health disparities worse.
“For those who do engage, there’s frustration, exhaustion, and I think a sense of alienation,” Dr. Doherty said. “If you send me a bill erroneously and can’t help me correct it, you’re showing me you don’t care about me.”
She added that she hopes the study may encourage other research on the topic and spark discussion about how to simplify the healthcare system.
“I think we’re at a place now where we may want to quantify how much improvement in outcomes we might see if we alleviated some of these administrative burdens,” Dr. Doherty said.
What this means for you
The results of this study are discouraging and underscore what we have known for a while: If you’ve been diagnosed with cancer, you have to be your own best advocate. You have to work to get the care you need and, in many cases, it involves doing a lot of paperwork and cutting through a lot of red tape.
But help is available. Triage Cancer is a non-profit organization that provides free information on the legal and financial issues that affect people with cancer, including tools to help you manage your healthcare finances and webinars on topics like managing your medical bills.
Breastcancer.org also has resources and tips for covering the cost of your breast cancer care.
You also can talk with others in our Employment, Insurance, and Other Financial Issues Community Forum.
Updated on October 18, 2023