More than 69,000 adolescents and young adults are diagnosed with cancer each year in the United States, and 80% of them survive at least five years after diagnosis. But many are at risk for developing secondary cancers, as well as chronic health problems such as infertility and heart problems from the chemotherapy, radiation, and surgery they received.

Even though most survivors of adolescent and young adult cancers have health insurance, many avoid routine medical care because it’s still too expensive. Huntsman Cancer Institute (HCI) investigator Anne Kirchhoff, PhD, MPH, found that with or without insurance, young cancer survivors were 67% more likely than those who never had cancer to forgo medical care in the past year because of the cost.

“Routine medical care in the years after a cancer diagnosis can detect long-term health conditions associated with cancer treatments,” says Kirchhoff. “Yet little is known about how much care adolescent and young adult cancer survivors receive in the years after their diagnosis and treatment.”

Kirchhoff and her HCI co-authors Mark Fluchel, MD, and Jennifer Wright, MD, analyzed responses to national surveys from young adults aged 20 to 39 years. They found cost barriers were particularly high for younger survivors aged 20 to 29 years. The cost of medical care also kept a high percentage of female survivors and uninsured survivors, as well as survivors who had poorer health, from obtaining routine medical care. Their study was published in the journal Cancer in December 2012.

“The Affordable Care Act is an important step to ensure adolescent and young adult cancer survivors have health insurance coverage,” says Kirchhoff. “But young survivors also need to be educated about the importance of regular health care to monitor for late effects. They need resource support beyond health insurance.”

What is a cancer “late effect”?

Late effects are any long-term complications from being treated for cancer at a young age. Examples include fertility problems, osteoporosis (weak bones), heart conditions, and skin cancer.

In response to this need, HCI created the Pediatric Cancer Late Effects Clinic in 2011. Wright directs the clinic and sees adults who were treated for cancer before turning 18 years old and survivors treated for typical childhood cancers, even if they were over age 18 when treated. (An example would be someone treated for osteosarcoma at the age of 22.) Parents, brothers or sisters, spouses, significant others, or children of the survivors are welcome to accompany the patient to appointments.

“The clinic’s mission is to educate survivors, help ease their health concerns, and empower them to become their own health care advocates,” Wright says. “This study confirms the need for and importance of our clinic’s work.”

Learn more about the Pediatric Cancer Late Effects Clinic and read a patient’s story in the 2010 HCI Annual Report.