Posted: Sep 24, 2012 5:20 PM
Sept. 24, 2012 -- Young cancer survivors often skip needed follow-up care because of cost, a new study shows.
The study, which is published in the journal Cancer, found that cancer survivors between the ages of 20 and 39 were 67% more likely than young adults without a previous cancer diagnosis to forgo medical care because of cost. That was true even if they had health insurance.
Children and young adults who survive cancer often need years of follow-up care because they're at risk of their cancer coming back. They may also need to be monitored for side effects from cancer treatments like radiation and chemotherapy.
"The level of medical care that's required is much greater than for your typical 20- or 30-year-old who may go to the doctor once a year and have a few lab tests done," says Anna Franklin, MD, a pediatrician with MD Anderson Cancer Center in Houston, Texas. Franklin directs the center's adolescent and young adult program, but she was not involved in the research.
She says the research describes the kind of struggles her patients face. Many of them have health insurance, but their plans require high deductibles or co-pays that effectively put the frequent medical care they need out of reach.
"Just because you have insurance doesn't mean you have out-of-pocket costs," Franklin says, adding that those costs can quickly add up if patients need multiple tests and doctor's visits.
"Even if the co-pay is $20, I remember when I was a college student, $20 was a lot of money. You may have to spend that on rent. You may have to spend that on Ramen noodles to get you to the end of the week," she says.
For the study, researchers used data from a large government survey of health behaviors. The study included 979 adults between the ages of 20 and 39 who had survived cancer by more than five years. They were compared to more than 67,000 adults of the same age who hadn't been diagnosed with cancer. All study participants responded to several questions about health care access and use.
Both groups reported similar household incomes. About 20% of both the cancer survivors and adults in the general population reported not having insurance.
When researchers looked at two measures of health care access -- whether or not a person has a regular doctor and whether they had gone for a routine physical in the past year -- the two groups looked pretty similar. But when researchers asked if there was a time in the last 12 months when a person had needed to see a doctor but couldn't because of cost, 67% more cancer survivors answered yes.
"This was surprising because survivors look like they have health insurance coverage at the same levels as the general population," says researcher Anne Kirchhoff, PhD, MPH, an assistant professor of pediatrics at Huntsman Cancer Institute at the University of Utah, in Salt Lake City. "It seems like they may need additional resource support beyond health insurance coverage."
Data for the study was gathered in 2009, before provisions of the Affordable Care Act (ACA) that impact young adults took effect.
Parents can now keep children on their insurance plans up to age 26. Many preventive tests are now free, which could help ease the cost burden on cancer survivors.
In 2014, the law will eliminate coverage limits and prevent insurance companies from denying people coverage because of preexisting conditions like cancer.
Because of those reforms, the picture for young cancer survivors is likely to look a lot brighter in the next few years, says Claire Brindis, DrPH, MPH. Brindis is the director of the Philip R. Lee Institute for Health Policy Studies at the University of California, San Francisco. She was not involved in the research.
But even with the new round of health reforms in the ACA, it's likely that some people will continue to struggle to get access to care, Brindis says.
"There are a number of personal consumer costs that have to be taken into account as barriers to seeking care," she says -- things like transportation costs, child care, and the cost of taking time off from work.
"It's a puzzle that has many layers," she says, "and it's not going to be solved overnight."