TBI crisis: As evidence mounts of effects of brain injuries on children, financing lags and Congress considers a bill
Traumatic brain injuries last decades, and financing lags as congress considers a bill
Patrick Donohue has been doing the math, but he can't get it to add up: Brain injury is the biggest cause of death and disabilities for kids and young adults by a large margin, sending more than 765,000 young Americans to the emergency room every year. So why, he wonders, does funding for it lag so far behind most everything?
Other numbers puzzle him, too. Like this one: Why can 10 trips to 10 doctors yield 10 different treatment plans if so many kids — and adults, too — have brain injuries? He describes treatment as frequently "arbitrary and random."
Donohue has become an expert on traumatic brain injury, something he never knew much about until the baby nurse he and his wife hired to help when his daughter Sarah Jane was born instead shook her when she was 5 days old, resulting in four broken ribs, two broken collarbones and severe brain damage.
Six years later, Donohue figures his job "is to change the world for her. She walks with assistance. She can't do any of those functions by herself." So he uses the experience from what seems like a former life as a political consultant to raise money for the Sarah Jane Foundation he founded on behalf of her and others with brain injuries. And he teaches communities about traumatic brain injuries, including a subset called pediatric-acquired brain injury, or PABI.
Right now, he says, $4 billion a year is spent on research for HIV/AIDS, which afflicts 56,000 people each year. Autism has 24,000 new cases a year, and is finally getting close to having $1 billion for research, "long overdue," he notes. Of those who enter emergency rooms for brain injuries, 80,000 are hospitalized and 11,000 die each year. But less than $10 million total is spent on figuring out brain injuries.
As for that lack of a care standard, he notes that leukemia doctors have a standard of care that's consistent. "The level of arbitrariness in the system with TBI (traumatic brain injury) is staggering," he says. "You present the case to top doctors and a dozen different procedures will be done." No one has collected the data. Three years ago, he brought experts together to try to knit together a seamless plan for care that would be accessible to all American families.
That's another bit of math: 50 states need 50 master plans, since states tend to have their own primary source of brain injuries. Utah, he notes, has more skiing accidents than some states and fewer of some other causes, which can include concussion, child abuse, strokes, brain tumors, meningitis, drownings and piercing wounds. Doctors need to be able to treat all kinds of brain injuries, but they should be especially up-to-date on the most common causes of brain injuries they're likely to see, he says.
A national plan
A concurrent resolution before Congress, the PABI Plan Act, would recognize brain injury and endorse a master treatment plan. It would create a network of 52 State Lead Centers of Excellence, one for every state plus the District of Columbia and Puerto Rico, each to focus on their own state's demographics, geography, laws, infrastructure, financing and causes of brain injuries without duplicating current practices. Donohue says he'll be surprised if HR 2600 doesn't pass by summer. It has bipartisan support — "some of them old adversaries" — and more than 100 cosponsors now.
The plan creates an evidence-based system of care accessible for all children and young adults regardless of where they live in America. It offers seven categories of care, starting with prevention — if everyone got that one right, the others wouldn't be needed. Then it provides steps through accessing care, care itself and reintegration into schools, communities and homes, since there is no cure for brain injury.
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