The results of a national cancer survey find a significant number of childhood cancer survivors are worried about keeping their health insurance, to the point of letting it affect their career decisions. The findings were published today in JAMA Oncology.

Anne Kirchhoff, investigator at Huntsman Cancer Institute (HCI) at the University of Utah and assistant professor of pediatrics, led the study. Her goal was to examine the prevalence of job lock in full-time, employed childhood cancer survivors. Job lock is when an employee stays at a job in order to keep work-related health insurance.

The study found 23 percent of childhood cancer survivors reported job lock, compared to just under 17 percent of the survivors’ siblings who never had cancer.

“Even with protections and expansions of insurance coverage in the U.S., this study proves there is still quite a bit of worry about insurance,” says Kirchhoff, “and it’s affecting how people make decisions from a job standpoint. Employer-based insurance coverage is the most common way people get insurance in the U.S. If someone gets stuck in a certain job because they want to keep their insurance coverage, that could really affect their earning power across a lifetime. It could potentially stymie their ability to start a new company or take on a job that would allow them to have more career or income growth, all because of health insurance worries.”

The study found female survivors and survivors with chronic health conditions were more likely to report job lock. Researchers also determined survivors who had a history of problems paying medical bills and those with past health insurance denials were more likely to report feeling like they couldn’t change jobs because of insurance worries.

Kirchhoff says, “This information gives us a feel for high-risk groups of survivors who may need more information about insurance. Many people experience a gap in education and literacy around insurance, and it’s important for people to understand their options — even those who are employed and consistently had access to insurance through work. We want to know what their concerns are so we can help patients and survivors. Getting health care should not be a worry for cancer survivors.”

The study analyzed 394 pediatric cancer survivors from pediatric oncology institutions across the U.S., along with 128 of their siblings. All of the participants worked 35 hours or more per week. Eighty-eight percent of them had employer-sponsored health insurance. Only 4 percent of survivors (and just over 6 percent of siblings) were uninsured.

The cancer survivors were treated for cancer between birth and age 20, and all of the participants ranged in age at the time of the survey from their 20s to early 60s. They were asked to fill out surveys analyzing their insurance and work concerns.

Childhood cancer survivors were chosen to study because their life experiences are unique. Childhood cancer patients have seen tremendous growth in outcomes and survival over the years. But many times, their strong treatments as children can lead to health problems as they get older. Certain chemotherapies can increase a patient’s risk of chronic health problems, such as cardiovascular disease, down the road. Treatments can cause infertility, and second cancers and lung issues can appear in some patients. About a third of pediatric survivors in this survey reported a severe, disabling or life-threatening chronic condition. The study showed the patients’ past cancer diagnosis can often shape their insurance and health care decisions later in life.

“Survivors have been through a lot when they were younger and understand the importance of making sure they can get health care when they need it,” explains Kirchhoff. “I think a lot of them also saw what their parents and families went through in terms of the financial stress and burden of dealing with a health crisis. So, they’re just primed to understand the importance of health insurance.”

This study was conducted as the Affordable Care Act was rolling out. Kirchhoff says she would like to do a follow-up study to see if the insurance exchanges and Medicaid expansion have lessened job-related insurance worries. Kirchhoff also believes the study demonstrates what the country could expect if the ACA was dismantled.

The survey was funded by the National Cancer Institute CA 55727, the LIVESTRONG Foundation and the Huntsman Cancer Foundation. Researchers from Massachusetts General Hospital and St. Jude Children’s Research Hospital also served as investigators on the study.

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Huntsman Cancer Institute (HCI) at the University of Utah is the official cancer center of Utah. The cancer campus includes a state-of-the-art cancer specialty hospital as well as two buildings dedicated to cancer research. HCI treats patients with all forms of cancer and operates several clinics that focus on patients with a family history of cancer. As the only National Cancer Institute (NCI)-Designated Comprehensive Cancer Center in the Mountain West, HCI serves the largest geographic region in the country, drawing patients from Utah, Nevada, Idaho, Wyoming, and Montana. HCI scientists have identified more genes for inherited cancers than any other cancer center in the world, including genes responsible for hereditary breast, ovarian, colon, head, and neck cancers, along with melanoma. HCI manages the Utah Population Database – the largest genetic database in the world, with information on more than 9 million people linked to genealogies, health records, and vital statistics. The institute was founded by Jon M. and Karen Huntsman. Mr. Huntsman is a Utah philanthropist, industrialist, and cancer survivor.