Insurance worries loom large for child cancer survivors

By Ben Lockhart

Deseret News

SALT LAKE CITY - Unlike most young people, 25-year-old Maranda Lebrecht is not in a position to wonder whether going without insurance is a calculated risk that could pay off for her.

Lebrecht, who beat lymphoma four years ago, knows being insured is a must for someone such as herself, who is regularly making follow-up doctor's visits in the wake of her cancer fight and being screened for side effects of treatment.

"In the past, I would think it's fine to go without insurance and hope for the best," she told the Deseret News. "It's not like just a normal person where I can hope I don't have anything for two years. I need to (see) doctors."

Nearly 25 percent of childhood cancer survivors experience "job lock," a dilemma in which a person stays with a job they would otherwise leave predominantly out of fear of losing insurance and being cut off from affordable health care access, according to research by the Huntsman Cancer Institute.

Lebrecht's need for intensive medical follow up is weighing heavily on her mind as she considers whether or not to commit to physician's assistant training as her next career step. Because studying to become a physician's assistant is so demanding, it would likely require Lebrecht, who is currently a medical assistant at a University of Utah clinic, to set work aside.

"Typically you can't have a job during (physician's assistant) school because of the committment," she said.

But foregoing her job in favor of school for two years, in turn, would mean losing her health insurance. And Lebrecht will be 26 - and not eligible to stay on her parents' insurance plan - by the time she would start her program. She hasn't yet decided whether she will take the plunge by going to school and buying an insurance plan from the federal health exchange, where "the coverage isn't as good," she says, and the affordability of plans into the future is uncertain.

"Going to P.A. school is something I've wanted to do my whole life," Lebrecht said. "Frustrating is a good word for it. ... It's kind of like you're stuck between a rock and a hard place because it's kind of hard to know what the right choice is."

Lebrecht's problem is not unique, according to results of the Huntsman Cancer Institute survey released last week.

Questionnaires given to 394 people who were treated for cancer before turning 20 showed 23 percent of them reported being in job lock, said Anne Kirchhoff, an investigator at the Huntsman Cancer Institute who directed the research.

That's compared to a little less than 17 percent of respondents reporting job lock in a control group consisting of those cancer patients' siblings, said Kirchhoff, who is also an assistant professor of pediatrics at the University of Utah.

"Some of the stresses around insurance were influencing how survivors made decisions about their employment," she said.

Health insurance as an employer benefit is the most common type of coverage in the United States, Kirchhoff said. Refraining from an ambitious career move like starting a business or going back to school can ultimately have negative long-term consequences, according to Kirchhoff.

"This could really affect their career growth, really could sort of affect their income long term, which would really affect their quality of life," she said.

In that way, the cancer those people once had victimizes them again, Kirchhoff said. The researcher said a regimen of continued follow-up care survivors face - as well as chronic health problems that are either disabling or life-threatening - are believed to be factors to that population experiencing higher than usual rates of job lock.

"It's a group of individuals who have been through a lot ... and unfortunately because of the cancer treatment they have had, they may be developing ... chronic health problems," Kirchhoff said. "I would say these results aren't that surprising but really give us a taste of what survivors face."

A cancer survivor also typically "has more interactions with the health care system" than the average person, she said, so they "really sense how their employment may affect their access to health care."

Each survey respondent used for the study's data reported working 35 hours or more per week, Kirchhoff said.

"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," Debby Rogers, a spokeswoman for the Huntsman Cancer Institute, explained in a release. "But many times their strong treatments as children can lead to health problems as they get older."

"Certain chemo therapies 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."

Kirchhoff said the siblings of cancer survivors made a useful control group because it somewhat isolated the cancer diagnosis itself as a predictor of future job lock, apart from other elements such as socioeconomic status and family upbringing.

Lebrecht said she's been told her type of cancer has a 10 to 20 percent chance of returning. Every few months, even in relatively good health, she visits with her oncologist and a cardiologist for checkups.

She said she's come to terms with the stern reality that her need for uninterrupted rigorous health insurance could possibly delay her - or even block her - from acquiring her dream job and the life that comes with it.

"It could definitely happen," Lebrecht said. "It would potentially limit me into not getting ... a job that's higher paying, just because I wouldn't be able to get the education."

Orem resident Eric Merkley, who was diagnosed with osteosarcoma at age 17 when a tumor was discovered in his leg, said the follow-up medical appointments are much more than a formality.

"Every protocol is different with your specific cancers, (but) you're going to have quite a few visits, every few months for checkups, scans, MRIs," he said. "I have an echocardiogram every year to make sure my heart is still functioning at its proper rate and ability."

Merkley, now 24, commutes to the U., where he is obtaining a master's degree in health care administration. Ever since the start of his fight with cancer, Merkley and his parents - whose insurance he's on - have approached insurance differently than most families.

"(My wife) has (her own) high-deductible plan and we understand the vast majority of the time we are not going to meet that deductible," he said, but even all these years later on the family plan he shares with his parents, "we plan on hitting that deductible every year."

The timeline of Merkley's education is more fortuitous than Lebrecht's, since he is set to graduate his master's program before he turns 26 - but only by two months. It will be important for him to have a job lined up when he graduates, he said.

"I can definitely see where a lot of fears come from patients who are self-employed," he said.

Lebrecht said that if legislation were to pass that eliminated or reduced insurance protections for people with pre-existing conditions - as has been considered in multiple failed bills that would have repealed much of the Affordable Care Act - voluntarily passing up on health coverage through an employer would become "even harder."

Kirchhoff believes that if the Affordable Care Act were to be dismantled, it would have a negative affect on cancer survivors.

In the survey, those who have struggled to pay for medical expenses or been denied health insurance at some point were the most "likely to report feeling like they couldn't change jobs because of insurance worries," Rogers said.

"This information gives us a feel for high-risk groups of survivors who may need more information about insurance," Kirchhoff said in a statement. "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 (have had) access to insurance through work."

The study, published Thursday in the JAMA Oncology peer-reviewed journal, was also carried out by researchers at St. Jude Children's Research Hospital and Massachusetts General Hospital.

Email: blockhart@deseretnews.com

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Credit: By Ben Lockhart Deseret News