It's called "The Silent Epidemic" the growing number of people in this country suffering from Tramautic Brain Injuries.
TBI's are severely disabling, life-altering accidents.
But advocates say TBI victims end up fighting two battles on their road to recovery: Relearning how to function again, and then convincing health insurers to pay for rehabilitation.
Advocates are mobilizing their forces to raise awareness and bring about change.
Recovering from a severe TBI is a long hard road, a journey that can take years.
Advocates say when the health insurance runs out, patients and their loved ones are left to assume the burden of care, often ill-equipped to provide that care, and end up financially and emotionally exhausted.
They live shattered lives of quiet desperation with no energy left to fight the system.
It's estimated 2 million Americans suffer life changing brain injuries every year, and yet most insurers won't cover the full cost of rehabilitation. Now, a Bakersfield doctor is out to change all that.
Bakersfield's Mark Ashley has been treating TBI patients for 30 years.
He founded the Centre for Neuro skills in Bakersfield, considered one of the top medical rehab facilities in the country.
In mid-January, Ashley and his team went to Sacramento for a legislative hearing three years in the making.
"I have had a total of nine brain surgeries in the last 28 years," said TBI Patient George Visger.
Lawmakers heard from TBI victims like George Visger, who played for the San Francisco 49er's 1981 Superbowl team, and the victim of multiple concussions on the gridiron, starting at age 13.
"I continue to this day, still fighting workmen's comp for various coverage," said Visger.
They heard from Karen Speaker, a teacher in San Luis Obispo who pays out-of-pocket for her brain injured husband's respite care.
"By the time I pay for Tim's care, because respite care is not considered medically necessary, I end up making about $15 a day," she said.
With TBI patients looking on, experts in the field offered a snapshot of the shortcomings of TBI treatment and care.
"California has no centralized system of medical data collection specifically for brain injuries," said UCLA Trauma Epidemiologist David McAurthur, Ph.D.
"No one knows precisely how many people are living with TBI in California," said Roger Trent, Ph.D. With The Department of Public Health.
"No payers routinely cover non-hospital treatment, which is the standard form of care," said Dr. Mark Ashley with Bakersfield's Centre for Neuro Skills.
"There's no cure for TBI, the best we can do is offer good management after TBI occurs," said David Houvda, Ph.D. with UCLA Brain Injury Center.
Advocates say most employers, and the insurance companies carrying their policies, offer no benefits or limited coverage for the medical rehabilitation of disabled TBI patients.
The state's top health insurance carriers were invited to the hearing but no takers.
One lobbyist came. He represents California's managed health care providers, and disputed claims that the industry is under insuring TBI victims when it comes to long-term medical rehabilitation.
"California health plans provide medically necessary health plan services to treat and rehabilitate patients with TBI in both in-patient and out-patient," settings, said Charles Bacchi, vice president of the California Association of Health Plans. "We may have clinical guidelines as health plans that may trigger a medical necessity review once the number of specified treatments have been provided, but the need for a determination to stop providing coverage is absolutely subject to medical necessity," added Bacchi.
But the grey area is in the determination of what is "medically necessary"
Critics say the insurance industry has a narrowly-defined interpretation of that concept, and the ultimate decision on long-term rehab is up to their physicians and risk managers.
"Some health insurance carriers exclude rehab altogether, some carriers allow 30 to 100 days of rehab under duress or with significant pressure," said Dr. Ashley. "The financial burden gets transferred from the private sector, which was paid to accept the risk, to the public sector and the taxpayer," added Ashley.
Mark Ashley laid out a course for change.
Among his recommendations:
Increase awareness about the social and medical impacts of TBI.
Establish a statewide injury registry to track TBI patients
More funding for the state's seven regional brain injury treatment centers.
Legislation forcing insurers to provide better coverage for TBI treatment and care.
That hearing was largely the result of three years of lobbying by the California Brain Injury Association.
Advocates urged urged lawmakers to examine a law recently passed in Texas that requires all accident and health insurers to provide patients access to medical rehabilitation following a brain injury.
