Insurance limits often cut off therapy in the middle of recovery for patients such as Ellie Cizek, 20, of St. Paul.
The way it’s been explained to her family, 20-year-old Ellie Cizek has about 18 months to regain the memory and thinking skills she lost on the Colorado ski slopes in January, when she glanced off a chairlift post and slammed headfirst into a tree.
So imagine their frustration this spring when, only four months into her recovery from a traumatic brain injury, her health insurer denied further care at a specialized rehabilitation center in Omaha and the family had to bring Cizek home to St. Paul.
“Insurance is pretty mean to brain-injured patients,” Cizek’s sister, Josie, said last week as the family prepared a fundraiser to pay for her care.
It’s a common refrain for patients like Cizek — and a growing concern in the United States, where the concussive force of sport injuries, car crashes and other accidents causes 1.7 million traumatic brain injuries each year, including 90,000 severe enough to cause long-term disability.
Doctors often recommend cognitive rehabilitation — a set of therapies to retrain patients’ brains and restore lost brainpower — beyond what insurance companies cover. Insurers face the dilemma of trying to hold the line on therapy costs, especially if it appears that patients have plateaued in their recoveries, amid mixed evidence about what works best. And families often learn that insurance coverage is ending just as they see substantial progress in their loved ones.
Getting rehab right is crucial: A traumatic brain injury can rob patients of memory, thinking skills, emotional regulation and even motor control of their arms and legs.
High-profile successes, such as former U.S. Rep. Gabrielle Giffords, draw attention to the potential of cognitive rehabilitation, but also to the fact that most people can’t afford the level of care she received.
A 2011 U.S. Institute of Medicine report concluded that rehab is often “incomplete” for those with severe brain injuries and that “many patients may not receive prescribed treatments due to limitations in payer plans.”
“You’re dooming people to social Darwinism — who has [access to care] and who doesn’t,” said Pete Klinkhammer of the Brain Injury Alliance of Minnesota, an advocacy organization.
To a visitor’s eye, Cizek is every bit the smiling young woman who made friends easily at Cretin-Derham Hall High School in St. Paul and then at the University of Kansas. The accident left her in a coma for days and in an amnesia-like state until April.
The physical scars have faded, but there are gaps in her planning and reasoning skills, and doctors have recommended inpatient rehab services.
“She can communicate and understand, but when she tries to plan an event or plan into the future, it just doesn’t quite stick,” said her father, Bill Cizek.
Ellie Cizek participates in group therapy at Courage Center in Golden Valley, but her parents want her to return to Quality Living Inc., in Omaha, one of the only inpatient rehab centers for traumatic brain injuries in the Midwest, so she can receive more intensive services during this critical period of healing.
Unfortunately, the fact that Cizek can walk and talk has weighed against her, because her insurer required some form of physical disability in addition to her cognitive problems to approve prolonged inpatient therapy.
Cognitive rehabilitation is an umbrella term for an approach that includes speech, occupational and physical therapy, and other techniques that coax injured portions of the brain to repair themselves or to kick-start other parts of the brain to take over.
Research on the effectiveness of cognitive rehab has accelerated since the wars in Iraq and Afghanistan, where so many soldiers suffered brain injuries from roadside bombs that traumatic brain injury has been dubbed the “signature injury” of those conflicts.