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WASHINGTON — Three months ago in Arizona, a gunman’s bullet struck Democratic U.S. Congresswoman Gabrielle Giffords in the head, passing through her brain just over her left eye.
She has since been making what’s been described as a miraculous path towards recovery thanks to intensive cognitive rehabilitation, able to speak and walk with assistance.
Thirteen years ago, Anne Forrest was in a fender bender in Washington. The Ph.D. economist suffered headaches, but was for a while unaware of the damage. Unbeknownst to her, her cognitive function had been damaged, leaving her with what she said was a third-grade math education. She never could return to that job.
The variability of diagnosis, coverage and care spurred Rep. Bill Pascrell, D-N.J., and members of Giffords staff to join with the Brain Injury Association of America. In a press conference Thursday they outlined the challenges and shortcomings of treating traumatic brain injuries.
In a letter to Health and Human Services Secretary Kathleen Sebelius, the coalition said health care reform presented an opportunity to standardize access to the care that has been proven most effective, urging a comprehensive definition of “rehabilitative and habilitative services” within the essential benefits package in the Affordable Care Act.
“We talk about traumatic brain injury as a misdiagnosed, misunderstood, underfunded public health epidemic,” said Susan Connors, president and CEO of the Brain Injury Association of America.
The issue of head injury has generated increased attention in recent years. More than 200,000 soldiers have been diagnosed with a brain injury in Afghanistan and Iraq in the last decade, and research is revealing long-term damage for football players from repeated, routine hits.
Former All Pro Safety Dave Duerson added to the attention in February when he shot himself in the chest with a shotgun after a series of personal problems, requesting in his suicide note that his brain be donated to the study of the effects of football on the brain.
“I’ve worked for many years on this problem. In the beginning we could fit us into a phone booth. So much has happened since,” said Pascrell. “There has been more advancement in the past five years than in the previous 500 years.”
More than 1.7 million Americans are diagnosed with a brain injury every year with most of them mild, but about 20 percent of them “medium” or “severe”—the only medical classifications. Research is limited, receiving $85 million of the National Health Institute’s $32 billion budget, or under 0.3 percent.
The complexity of the human brain makes research difficult. Diagnosis is vague and recovery is ill-defined, experts say.
“If you’ve seen one brain injury, you’ve seen one brain injury. You have a better chance at finding your exact twin somewhere in the world than you do of finding someone who had the exact same brain injury,” BIA National Medical Director Dr. Brent Masel said.
Insurance coverage is inconsistant, doctors testifying at the hearing said. Giffords, since she was on the job, received government employees workers’ compensation, so her rehabilitation coverage is uncapped. Many insurance companies provide limited reimbursement for cognative rehab. Without timely rehab, doctors said, recovery chances decline.
Dr. Keith Cicerone, the director of the Director of Neuropsychology at the JFK Johnson Rehabilitation Institute & New Jersey Neuroscience Institute, said that in conversations with funding organizations for rehab, they’ve frequently been told “the ability to walk 50 feet unassisted” was the point to which they’d continue funding rehab.
“That ignores the question of whether the person knew where they’re going at the end of those 50 feet.” Cicerone said.
Pascrell admitted that money was tight in the federal government, and that costs for comprehensive rehabilitation would be significant. But he said it was an issue of priorities, and that this was a priority for him.
Cicerone added that current methods of care wasted more money than cognitive rehabilitation. Masel had earlier said that Texas, the only place where legislation mandating coverage for brain injuries, had only boosted premiums by $4 a month, and that taxpayers bear the costs when delayed or inadequate care leads to costly medical complications, permanent disabilities and loss of economic productivity.
Three years after her accident, Forrest finally got care in Houston, the same city where Giffords is rehabilitating, and now works as an advocate for brain injury treatment.
“Why give me disability money but not rehabilitation money?” Forrest asked, stating that she would rather have gotten back to work.