Giffords may get better brain-injury care than most of her constituents
This story was originally published by ProPublica.
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In the minutes, hours and weeks after U.S. Rep. Gabrielle Giffords was shot at a meeting with her constituents in Tucson, the public witnessed some of the very best brain-injury care in the country. In the year following the shooting, Giffords herself has championed the rights of others — whether injured by gunfire or car crashes — to get the same care she continues to receive. Holding town hall meetings and panel discussions, she has argued that everyone should get the full spectrum of treatments: from the intensive trauma care that saved her life to the rehabilitation therapies that are, albeit slowly, helping her return to living it.
We've covered in detail the military's track record of refusing treatments such as cognitive rehabilitation therapy for thousands of soldiers and veterans with traumatic brain injuries, or TBIs. But "despite how much people have criticized military care," said Geoff Manley, a professor of neurological surgery at the University of California, San Francisco, "it's a hundred times better than what goes on in the civilian sector."
The average American has a paucity of services to choose from, according to Manley, who describes the current lack of standards in treating traumatic brain injuries a "travesty." The problem is twofold: a lack of research into the best course of treatment for TBI, and a lack of access to the treatments that are available.
Brain injuries come in many different types and severity. This year, the estimated National Institutes of Health funding for research on traumatic brain injuries is $85 million. But Manley said treatment for a single patient with a severe injury can cost $2 million to $4 million. Last year alone, the estimated total cost of TBI was $76.3 billion, according to a report by Lisa McGuire of the federal Centers for Disease Control and Prevention. The mismatch between the enormous annual cost of TBI to the general population and the amount of money going into research is striking, said Manley.
Despite the need for more research, Giffords' story shows the potential of the treatments now available. But according to Susan Connors, the president of the Brain Injury Association of America, what treatment you receive depends heavily on your state, insurance plan (or lack of one), hospital and the people advocating for you.
In some states, like Texas, laws mandate rehabilitation for people who suffer brain injuries. Other states, like Michigan, have mandatory auto insurance policies that cover all medical costs if you have an accident (collisions are one of the leading causes of traumatic brain injuries). According to Connors, both state laws give patients comprehensive access to the whole continuum of care.
Other states, like Georgia, have created special programs or "trust funds" for people who suffer brain injuries. An added fee on traffic-related fines (usually about 50 cents to $1) is deposited in an account set aside for individuals who can't afford to pay for care. In Florida, the fee also applies to drunk boaters.
Your care also depends heavily on the kind of insurance you have, if any. Many types, from standard health insurance like Blue Cross Blue Shield to workers' compensation to auto insurance, provide some coverage for TBI, but plans vary widely even within each category. Most plans cover the intensive care immediately after the injury, such as the brain surgery that saved Giffords' life. But few cover the longer-term rehabilitation therapies that are so critical to regaining mental and physical functions. (One plan that generally doesn't offer much coverage even for immediate care is "mini-medical" insurance, which often doesn't pay for major injuries caused by accidents or usually requires the patient to pay a large proportion of the bill.)
According to Connors, Giffords received superb treatment because she had great coverage from her federal workers' compensation, which is available not only to Congressional representatives but to roughly three million federal employees.
Dr. Steve Flanagan, chairman of Rusk Rehabilitation at NYU Langone Medical Center, said comprehensive rehabilitation must address any problems in physical abilities (muscle strength, balance, reflexes), cognitive abilities (memory, problem-solving, attention) and emotional aspects (anxiety, depression, irritability). Because some of these problems continue for years after an injury, they often require lifelong follow-up treatments and regular monitoring.
Even if your insurance policy theoretically covers such long-term treatments, whether it actually ends up paying for the care can be utterly arbitrary, Flanagan said. The advocacy skills of you, your family members and your provider also make a difference. According to Connors, the more vocal, the better. When it comes to injury coverage, Connors said, "the squeaky wheel gets the grease, whether it's UnitedHealthcare, Medicare or TriCare."
Finally, your hospital matters. "There are only a handful of places you'd want to be for your acute care or your rehab," Manley said, namely facilities with specialized trauma and rehabilitation units. The TIRR Memorial Hermann in Houston, where Giffords went for her rehab, is renowned for treatment of traumatic brain injuries. U.S. News & World Report lists another 18 of the top-ranked hospitals for rehabilitation.