According to a national health care advocacy group, some 6,000 americans a day suffer a traumatic brain injury. In a split second, victims are severely disabled from falls, motor vehicle accidents, and assaults
These are a life-altering injuries, that scramble the brain's wiring, many times reducing an individual to an infantile state of function and dependence. Some call it "a living death", and yet, unlike cancer, stroke and heart attack patients, brain injury victims are often denied insurance coverage once they're stabilized and leave the hospital.
Traumatic brain injury advocates are on a mission to raise the bar on the standards of care. Advocates say it's time victims of "this silent epidemic" be given a voice.
Anthony Farato, 7, suffered a traumatic brain injury following surgery to remove a tumor from his brain stem. He went from a vibrant six-year-old to a bedridden boy, robbed of the world and the body he knew.
"Three months ago, he was doing nothing," said Anthony's Mother, Rachel Forato. "Just lying in an I.C.U. Bed, basically comatose," she added. "He was your typical boy you know. We were glued together," said Anthony's Father, Gino Forato.
Anthony's parents struggled for weeks to convince their health care provider that he needed to be at the Centre for Neuro Skills in Bakersfield, widely regarded as a world-class facility for the rehabilitation of brain injured patients.
"It took a lot of man hours and discussions with the insurance group to make them understand what to expect in the way of progress, rather than keeping us on a short time limit," said Chris Persel, Rehabilitation Director with the Center for Neuro Skills.
The Feratos consider themselves lucky. Their insurance carrier finally relented and agreed to pay for Anthony's medical rehabilitation, but it's not a blank check. "Every two weeks we have a big meeting with the carrier. If there's no progress, they don't want to pay for it," said Rachel Forato.
"It's not a broken arm. It requires stimulation and rehabilitation...to help them function at their best," said Persel.
The wife of former marine John Kerchner says it took her five years to persuade the Veterans Administration to approve coverage for her husband's rehabilitative care at CNS. "I guess they probably thought I would give up after a while," said Kerchner's wife Olivia Kerchner.
John Kerchner was an active duty Marine stationed at Camp Pendleton when he crashed on his motorcycle near Palm Springs ten years ago. He was in a coma for three months, then transferred to four different hospitals for treatment, until the V.A. said it was time to go home.
"I asked them, what kind of rehab could we get back home and they gave me a packet of exercises we could do at home, which was difficult, since I had a toddler and an infant to care for," said Olivia Kerchner. But she finally prevailed.
Her husband has been at the Centre for Neuro Skills for four years now, and he's making progress. Joe Petersen is John's "bootcamp" trainer.
"Johnny's amazing," said Petersen, who also owns Building Better Bodies Fitness. "He's been through a lot, and he still fights and struggles and it takes a lot of love and compassion to work with this population, but they're people two. And lives can change in a blink of an eye."
"Because of the accident, I lost my balance and I can't balance, so Joe's helping me get my balance back," said John Kerchner.
CNS Founder, Doctor Mark Ashley says, 30 years of research and application has proven, medical rehabilitation is the best tool for bringing TBI patients back into the fold. "The evidence is clear," said Dr. Ashley. "When we provide adequate rehabilitation services, we reduce disability, we increase independence and improve the overall quality of life for the individual."
CNS says 70% of the clients who go there, return to work, once again in control of their lives. But it's a hard road and it's expensive. Neuro therapy often lasts more than a year. Total costs can run as high as $400,000 - $500,000 for the most severely injured.
Advocates say many times, the biggest challenge for these patients is not re-learning how to eat, drink and dress themselves again, it's convincing their insurance carriers that intensive medical rehabilitation is critical to a successful outcome and it's cheaper.
"Left untreated or partially treated, a brain injury can range from a million dollars to $30 million in lifetime cost of care," said Dr. Ashley. "As disability is reduced, we reduce the long term cost of burden to the taxpayer or other-system burden."
But Ashley says that line of thinking runs counter to the bottom line considerations of a for-profit health care industry that is run like any other big business, obligated to shareholders. "When you take a financial view of health care, you lose sight of health outcomes," said Dr. Ashley.
For a patient's family, the journey back to normalcy can be a long and severely frustrating ordeal, leaving them financially and emotionally exhausted, living in limbo, wondering how long before the insurance company's risk managers will draw the line.
"It's aggravating because in their world, everything's fine. They go home to their families. To us, it's like, everyday we have concerns. We're worried, you know, is this our last week or this is our last day?" said Gino Forato.
Wednesday night on 17 News, we'll get an insurance industry perspective and we'll take you to a historic hearing in Sacramento, where for the first time, advocates briefed lawmakers on current gaps in coverage and treatment for TBI victims.
