TL;DR
- Teen Cambrie suffers from severe epilepsy.
- Insurance denied coverage for deep brain stimulation.
- After advocacy, insurer reversed decision.
- New policy includes pediatric patients.
- Surgery scheduled to improve quality of life.
In the heart of rural Hazel Dell, Illinois, a mother’s love battles the bureaucratic nightmare of health insurance. Brandi Sharp, a dedicated school nurse and mother of three, has been on a relentless quest for effective treatment for her 13-year-old daughter, Cambrie, who suffers from uncontrolled seizures. The stakes? Nothing less than her daughter’s quality of life.
“We tried everything,” Brandi shared, listing off over 20 anti-seizure medications prescribed over eight grueling years. But Cambrie’s epilepsy is a tough nut to crack. “The medications that typically work for kids don’t work for her,” Brandi lamented. “They cause a lot of rebounds.” It’s a heartbreaking reality for a family that just wants to see their daughter thrive.
Cambrie’s journey began when she was born a “micro-preemie” at just 27 weeks. After a seizure at four years old, her life spiraled into a series of major seizures that left her in a medically induced coma by age seven. Desperate for relief, doctors performed a surgery called corpus callostomy, which partially severed the nerve connections in her brain. They also implanted a device to send electrical pulses to her brain through the vagus nerve. Initially, it seemed like a miracle—until it wasn’t.
Fast forward six years, and Cambrie is back to suffering multiple seizures daily. “She’ll have a seizure and say, ‘I wish they would find a way to fix this,’” Brandi recalled, her heart breaking for her daughter. Enter deep brain stimulation (DBS), a surgical treatment that could potentially change everything. But there was a catch: the family’s insurance, Anthem Blue Cross Blue Shield, denied coverage for the procedure, claiming it wasn’t FDA-approved for pediatric patients.
“It’s a very sad thing when an insurance company just rejects it,” said Dr. Neena Marupudi, a pediatric neurosurgeon who understands the struggles families face when navigating insurance policies. The appeal for coverage was denied, leaving the Sharp family in a lurch. Without insurance, the cost of DBS could reach a staggering $100,000—money they simply didn’t have.
However, the tide began to turn when NBC News reached out to Anthem. Just days later, the insurer changed its tune, approving the deep brain stimulation treatment for Cambrie. “We had not received all the patient’s medical information. Once we received that information demonstrating that her treatment options are limited, we approved the deep brain stimulation treatment,” Anthem stated.
But the good news didn’t stop there. Anthem announced a policy change to include coverage for deep brain stimulation in children and adolescents for certain conditions, including epilepsy. “We are constantly reviewing our medical coverage policies to keep pace with the latest treatment standards,” the insurer added.
This policy change is a monumental step forward for families like the Sharps, who are often left fighting for their children’s health against an indifferent system. “Changes like this are an important step in improving access to care,” Dr. Marupudi noted, highlighting the significance of recognizing DBS as a viable treatment option for children with severe epilepsy.
With Cambrie’s surgery scheduled for June, there’s a glimmer of hope for a future with fewer seizures. “I wish they were never a part of me,” she said, echoing the sentiments of countless families navigating the treacherous waters of pediatric healthcare. In a world where insurance companies often hold the keys to life-changing treatments, the Sharp family’s story is a powerful reminder of the importance of advocacy and the need for systemic change in healthcare.
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