Traumatic brain injury is considered the "signature injury" of soldiers fighting in Iraq and Afghanistan. An NPR and ProPublica investigation on brain injuries in the military continues.
December 20, 2010
During the past few decades, scientists have become increasingly persuaded that people who suffer brain injuries benefit from what is called cognitive rehabilitation therapy — a lengthy, painstaking process in which patients relearn basic life tasks such as counting, cooking or remembering directions to get home.
Many neurologists, several major insurance companies and even some medical facilities run by the Pentagon agree that the therapy can help people whose functioning has been diminished by blows to the head.
But despite pressure from Congress and the recommendations of military and civilian experts, the Pentagon’s health plan for troops and many veterans refuses to cover the treatment — a decision that could affect the tens of thousands of service members who have suffered brain damage while fighting in Iraq and Afghanistan.
Tricare, an insurance-style program covering nearly 4 million active-duty military and retirees, says the scientific evidence does not justify providing comprehensive cognitive rehabilitation. Tricare officials say an assessment of the available research that they commissioned last year shows that the therapy is not well proven.
But an investigation by
NPR and ProPublica found that internal and external reviewers of the
Tricare-funded assessment criticized it as fundamentally misguided.
Confidential documents obtained by NPR and ProPublica show that
reviewers called the Tricare study "deeply flawed," "unacceptable"
The Battle For Care Of The Wars' Signature Injuries
Tricare’s stance is also at odds with some medical groups, years of research and even other branches of the Pentagon. Last year, a panel of 50 civilian and military brain specialists convened by the Pentagon unanimously concluded that cognitive therapy was an effective treatment that would help many brain-damaged troops. More than a decade ago, a similar panel convened by the National Institutes of Health reached a similar consensus. Several peer-reviewed studies in the past few years have also endorsed cognitive therapy as a treatment for brain injury.
Tricare officials said their decisions are based on regulations requiring scientific proof of the efficacy and quality of treatment. But our investigation found that Tricare officials have worried in private meetings about the high cost of cognitive rehabilitation, which can cost $15,000 to $50,000 per soldier.
With so many troops and veterans suffering long-term symptoms from head injuries, treatment costs could quickly soar into the hundreds of millions, or even billions of dollars — a crippling burden to the military's already overtaxed medical system.
The battle over science and money has made it difficult for wounded troops to get a treatment recommended by many doctors for one of the wars' signature injuries, according to the NPR and ProPublica investigation. The six-month investigation was based on scores of interviews with military and civilian doctors and researchers, troops and their families, visits to treatment centers across the country, confidential scientific reviews and documents obtained under the Freedom of Information Act.
“I’m horrified,” said James Malec, research director at the Rehabilitation Hospital of Indiana and one of the reviewers of the Tricare study. “I think it’s appalling that we’re not knocking ourselves out to do the very best” for troops and veterans.
Defense Secretary Robert Gates, who has complained over the past year about the growing cost of the Pentagon’s health care budget, declined a request for an interview. George Peach Taylor, the newly appointed acting assistant secretary of defense for health affairs, the top ranking Pentagon health official, also declined repeated interview requests. Tricare officials defended the agency’s decision not to cover cognitive rehabilitative therapy and said it was not linked to budget concerns.
Capt. Robert DeMartino, a U.S. Public Health Service official who directs Tricare's behavioral health department, said Tricare is mandated to ensure the quality, consistency and safety of medical care delivered to service members.
He said those standards can be difficult to meet with cognitive rehabilitation. Therapists design highly individualized treatment plans, often relying on a variety of different techniques. The holistic approach and lack of standardization makes it hard to measure the effects of the therapy, he added.
DeMartino noted that the agency covers some types of treatment considered part of cognitive rehabilitative therapy. For instance, Tricare will pay for speech and occupational therapy, which can play a role in cognitive rehabilitation.
DeMartino said cost played
no role in the agency’s decision, calling such a suggestion "
Cognitive rehabilitation therapy "is a new field for us,” De Martino said. "We don't know what it is. That's really an important thing. You don't want to send people out when you don't know what treatment they're going to get and what the services are going to be."
Officials at the Pentagon are themselves divided on the value of the treatment. A handful of military and veteran facilities provide cognitive rehabilitation therapy, though most do not have the capacity or offer programs of limited scope.
Tricare was designed to fill in such gaps in the military health system by allowing troops and veterans access to civilian medical providers. But since Tricare has a policy against covering cognitive rehabilitation, service members and retirees who seek treatment at one of the nation’s hundred of civilian rehabilitation centers could have their claims denied, or only partly paid.
The contradictory policies have resulted in unequal care. Some troops and their families have relied upon high level contacts or fought lengthy bureaucratic battles to gain access to civilian cognitive rehabilitation programs which provide up to 30 hours of therapy a week. Soldiers without strong advocates have been turned away from such programs, or never sought care, due to Tricare’s policy of refusing to cover cognitive rehabilitation therapy.
As a result, many soldiers, Marines and sailors with brain injuries wind up in understaffed and underfunded military programs providing only a few hours of therapy a week focused on restoring cognitive deficits.
Sarah Wade Fights For Her Husband's Care
Sarah Wade’s husband, Ted, was a sergeant with the 82nd Airborne Division when a roadside bomb tore through his Humvee in February 2004. The blast severed his right arm above the elbow, shattered his body and left him with severe brain damage.
After the military medically retired her husband later that year, Wade struggled to find appropriate care for him. The closest VA hospital set up to handle such complex injuries was in Richmond, Va., a 320-mile drive from their home in North Carolina.
Tricare, however, would not pay for cognitive rehabilitation at a nearby civilian program. Wade, who once worked as an intern on Capitol Hill, turned herself into a one-woman lobbyist on her husband’s behalf. She called her representatives and met with senior VA and DOD officials. She testified before Congress, met President George W. Bush and Gates, and was recently invited to the White House by President Barack Obama for a bill signing ceremony.
Wade managed to set up a special contract between the VA and a local rehabilitation doctor to help her husband. But now she wants to move back to Washington, D.C., to be closer to family.
She must begin her fight all over again — more phone calls to Tricare, more visits to government offices, more battles to get Ted Wade the care he needs.
"We go to Capitol Hill like some people go to the grocery store,” Wade joked one afternoon during a recent visit to Washington. “If we can't figure it out, then probably nobody can."
The Brain Campaign
The campaign to persuade Tricare to cover cognitive rehabilitation therapy began in earnest after the scandal at Walter Reed Army Medical Center in Washington in 2007. News reports featured brain-damaged soldiers living in squalid conditions and receiving substandard care.
The Brain Injury Association of America, a grassroots advocacy group for head trauma victims, started lobbying Congress and the Defense Department to order Tricare to cover rehabilitation for service members
The campaign was a natural extension of the association’s mission. Each year, more than 1.4 million American civilians suffer brain injuries in car accidents, strokes and other medical emergencies. They and their families often have to battle private insurance companies for cognitive rehabilitation.
The insurance industry is divided: Five of 12 major carriers will pay for cognitive rehabilitation therapy for head trauma, according to Tricare’s study. Aetna, United Healthcare and Humana cite national evidence-based studies and industry-recognized clinical recommendations that point to the therapy’s benefits.
The federal Centers for Medicare and Medicaid Services does not have a single national policy on cognitive rehabilitation. Instead, it leaves decisions to local contractors, often insurance carriers who process claims for the agency. The contractors are able to provide the therapy case by case, so long as they determine the treatment is "reasonable and necessary," a Medicare spokesman said.
"The totality of the evidence appears to support the value of cognitive rehabilitation for people with traumatic brain injury in improving their function,” said Robert McDonough, the head of clinical policy at Aetna. “We feel on balance the evidence leads us to conclude that cognitive rehabilitation is effective."
Carriers and doctors providing the service can point to a long list of medical associations and scientific studies backing the effectiveness of cognitive therapy: The National Institutes of Health;the National Academy of Neuropsychology and the British Society of Rehabilitation Medicine, among others, have weighed in supporting the treatment.
Armed with such evidence, brain injury association lobbyists did not have much trouble finding support in Congress. By 2008, more than 70 House and Senate members had signed letters to Gates asking him to support funding for cognitive rehabilitation therapy. Then-Sen. Obama led a group of 10 senators urging Tricare to pay for therapy.
They noted that the Pentagon and the VA have improved their efforts to treat brain injury, including increases in the number of doctors and therapists available at facilities.
But the military needed to do more, they said. They wrote that Tricare should cover cognitive rehabilitation so all troops "can benefit from the best brain injury care this country has to offer."
"Given the prevalence of TBI among returning service personnel, it is difficult to comprehend why the military's managed health care plan does not cover the very therapies that give our soldiers the best opportunities to recover and live full and productive lives," the letter said.
A response letter from the Pentagon told the representatives that Tricare officials had not been convinced by available evidence. "The rigor of the research … has not yet met the required standard," wrote Gordon England, then the deputy defense secretary.
Read more or listen to the story here: <http://www.npr.org/2010/12/20/132145959/pentagon-health-plan-wont-cover-brain-damage-therapy-for-troops>
December 21, 2010
McKinney's small apartment faded from his thoughts: The closet filled with shirts and pairs of jeans, hung three inches apart, all facing exactly the same direction, the way the Marines had taught him. The box packed with a dozen brown plastic medicine bottles. The worn couch that he slept on instead of the bed. The eraser board on his refrigerator where he had scrawled "A coward dies a 1,000 deaths. A warrior dies one."
Suddenly, a nurse's aide knocked on the door. Had he checked the oven? McKinney leapt up and ran to the kitchen, pulling out a tin of brownies on the point of burning.
"I guess I was just very focused on the tattoo design," he told a counselor later, pushing a camouflage baseball cap back on his head. "I set the alarm. I guess I just didn't hear it."
"Try to work on one thing at a time," she told him. "Multitasking is just asking the brain to do two or three things not too well."
McKinney, 29, nodded in agreement. It seemed so obvious once she said it. But his mind — the mind that once helped sniper teams in Iraq, that navigated battlefield maps and complex rules of enemy engagement — had just not come up with the idea to do one task instead of many. "When you think about it, it kinda makes sense. But I wouldn't think about it on my own," he said.
McKinney is an Iraq war veteran who suffered multiple concussions, also known as mild traumatic brain injuries. Bomb blasts jarred his brain, leaving him with no outside scars, but with nagging mental problems. His short-term memory is bad. He moves slowly through ordinary chores. He gets disoriented easily, and can't find his way to the home that he has lived in for months without the aid of a GPS.
A farm boy fond of the Georgia Bulldogs and chewing tobacco, McKinney has pinned his hopes for recovery on cognitive rehabilitation therapy, a subtle and complex treatment for a subtle and complex injury. Doctors and studies have shown that the therapy helps soldiers. But the Pentagon's primary health plan for soldiers and seriously wounded veterans, called Tricare, will not cover the treatment, saying it is still unproven.
Cognitive Rehabilitation in Action
To see what cognitive therapy looked like, ProPublica and NPR spent several days with McKinney and fellow soldiers and veterans at Project Share, a charity to help brain-damaged soldiers. The program is based out of the Shepherd Center for Brain and Spinal Cord Injury in Atlanta, a nationally recognized hospital for head injuries.
Former Home Depot magnate and philanthropist Bernie Marcus founded Project Share in January 2008 to fill the gaps left by Tricare and military and veterans hospitals, which often lack the expertise and staffing to provide a full-scale program of cognitive rehabilitation therapy.
Cognitive rehabilitation is "very time consuming. It's not an easy deal," said Marcus. "Isn't this worthwhile? Isn't this something we should all be concerned about? Whatever it takes is what we should give them."
The visit revealed no flashy techniques, no cutting-edge medical devices. Instead, the men spent their entire days with therapists who focused on improving their memory, speech, balance and psychological health.
Soldiers got individualized treatment plans from a team of therapists who administered an intensive, two-week long evaluation to pin down their cognitive needs.
Therapists from different fields closely coordinated. A behavioral therapist provided counseling, since nearly all of the soldiers have post-traumatic stress disorder, a psychological injury which frequently accompanies traumatic brain injuries.
A speech therapist taught basic organizational techniques to overcome memory problems: How to make lists, how to pay bills, how to organize paperwork. A physical therapist helped them manage pain and relearn balance, which is often thrown off after a blast injury.
In the evenings, the men lived in apartments provided by the center. They did daily field trips, doing errands that are commonplace for most, but difficult for those with cognitive problems. They shopped at a grocery store. They cooked dinner. They helped assemble wheelchairs for the needy. They went to a horse park, where they combed, fed and rode horses.
At each step, a therapist helped them prepare for the job at hand. They suggested making to do lists; using an iPod to keep track of medications; storing medical and military records into clearly labeled file folders.
Soldiers get a blue rubber bracelet with the initials SWAPS. The letters are supposed to remind them of a course of action should they become frustrated or mentally overloaded. The letters are an acronym: Stop; What's the problem?; Alternatives and options; Pick a plan; Satisfied?
The men stay for two and three months at a time. Afterwards, a Project Share worker follows them for up to a year to make sure that they are using the techniques they have learned to cope with life in the real world.
"It's very cozy and cocoon-like and warm and fuzzy here," said Tina Raziano, who visits soldiers and veterans at their homes and military bases to make sure they are adjusting. "When they leave here, they go through major, major changes. You really have to adjust to a new normal."
Cognitive therapy is not a silver bullet, nor is it a one-time treatment, or a rigid, well defined program. Instead, therapists here say, it employs a variety of techniques designed to do the hard work of retraining each soldier's brain to compensate for the things it can no longer do.
"We all see that they start out unable to do basic tasks," said Bonnie Schaude, a speech pathologist who coordinates many of the treatments. "People are leaving here, and they can function independently."
The Intricacies Of Care
The visit made just as clear, however, the difficulty of implementing such an intensive, long-term plan for the military or Department of Veterans Affairs. Official Pentagon figures show that 188,000 soldiers have suffered some kind of brain injury since 2000. The number includes blast wounds, but also head trauma sustained in vehicle crashes, training accidents and household falls. Previous NPR and ProPublica stories have shown that the number likely falls short of the full tally by tens of thousands of soldiers.
The vast majority of head injuries are concussions, from which most soldiers recover quickly. The only treatment needed is bed rest and perhaps pain medication for headaches. But providing the kind of care available at Project Share to even the small percentage of brain-damaged soldiers who need it would require a tremendous commitment of time and money from military and veteran medical systems.
Project Share provides more than 30 hours of rehabilitation a week for several months at a time, and a year of follow up. In contrast, most VA and military systems can provide only a few hours of therapy a week. All Project Share's services are in one building, across the street from the Shepherd Center and its scores of cognitive experts. Military and VA facilities can spend months recruiting a single neurologist at a base for 30,000 soldiers.
The Pentagon's medical budget is $50 billion a year, expected to skyrocket to $65 billion by 2015. The system already cannot fill the slots available for psychologists, counselors and neuropsychologists, who can make better money in the private sector. The VA also has to care for an enormous population of aging veterans, whose geriatric needs are far different than the needs of injured Iraq and Afghanistan war veterans.
Project Share even has the resources to fly in family members and spouses on private planes, the costs and time donated by volunteers. A pilot flew Tiffany Dantzler, 22, from South Carolina to Georgia one recent day to visit her boyfriend, Ashley Craft, so the two could receive joint counseling on what to expect from brain damage recovery.
Struggling To Be 'Half As Good'
Craft, 26, sustained burns and a brain injury in a 2006 roadside bomb explosion in Iraq. After the explosion, he could not remember his own name. A specialist in the Marine Corps, he was medically retired in August 2007. He suffered from post-traumatic stress. He got angry quickly. A mechanic who worked on military vehicles, he could no longer tune up a car back home.
Craft got treatment at VA hospitals in Richmond and Columbia, S.C., near his home. But each time he left the programs, he felt lost and abandoned, he said.
His captain in the Marine Corps heard about Project Share, and got him admitted. Craft now hopes that the intensive rehabilitation will help him return to a normal life. At a recent session on anger management, he tried to take notes on a handheld memory device, painfully typing in one pointer after another.
"You're not the way you used to be. And it's really tough to grasp that concept," he said. "I used to think I was pretty good, and now I have to use a lot of adaptive equipment to remind myself, or to even be half as good as I used to be. That's what I got to do. That's my life now."
Shy and hesitant when he talks, a man who has seen his expectations dashed more than once, Craft said he is more hopeful, now. Project Share provides him far more intensive care than he was able to receive in the military, he said. His girlfriend has already noticed a difference.
"He seems more confident about what he says. His memory seems a little bit better," Dantzler said. "He seems more alive."
Marcus, the philanthropist who supports the program, said the expense and effort are worth it. In July 2008, he visited officials at the Army Surgeon General's office to pitch cooperation between Project Share and the military. He got a tepid response, according to Marcus and several others present at the meeting. The military said it wanted to focus more on improving its own treatment centers.
Marcus left frustrated. He had visions of an alliance between the military and a nationwide network of civilian treatment programs. Instead, Project Share has treated about 70 soldiers since it began two and half years ago. Since there's no formal relationship with the military, soldiers generally get referred by word of mouth. The military sent one therapist to receive training.
"That's where the problem is, trying to keep it internal when in fact you don't have the resources,: Marcus said. "If you can't do it yourself, outsource what you can't do. That's the name of the game." Military and VA officials "all say things that you want them to say, but the bottom line is, it's not happening."
As he talked, Marcus grew agitated.
"I don't feel that Washington has paid attention to this thing. I don't think that Washington has done enough on this. I blame the president, I blame the Congress, for not giving these kids the opportunity to go on with a fruitful life after they have devoted their service to this country and put their lives on the line," Marcus said.
"It just doesn't make sense to me. It frustrates me. And it angers me. Kids are wandering around the streets today that will become tomorrow's criminals that were yesterday's heroes. How pathetic is that?
"We owe these kids a hell of a lot more."
Cpl. Brendan Jannesen, 23, a special forces soldier in the 75th Ranger Regiment, was patrolling at night in Afghanistan in August 2010 carrying heavy gear when he slipped off a trail, falling down a steep slope.
Tall, thin and fit, Jannesen had been a forward observer, trained to coordinate airplane and artillery strikes with soldiers on the ground attacking Taliban fighters. A math whiz, he could simultaneously juggle people screaming in both ears as he figured out the angle for incoming mortar strikes in the middle of battle.
When he awoke from his fall, however, Jannesen struggled to do simple arithmetic. He had to use his fingers to add. Jannesen's sergeant sent him to Project Share, hoping that its intensive approach would help.
Sitting in a common room with a poker table, Jannesen became passionate as he described how much he wants to return to duty, how much he has improved so far.
"I could do degrees, azimuth, you have to calculate the time of flight, the number of rounds, how fast your target is moving to try to get a direct hit on target. It was very, very heavy on cognitive demands," he said. "Now, I get worn out trying to write out a to-do list. It's very, very frustrating and very difficult to handle. You want to do stuff, but you can't do it."
About half the patients at Project Share are veterans, medically retired from the service and hoping to return to civilian life. The others are active duty soldiers who aim to return to their units. They are mostly Marines and special operations soldiers whose superiors have heard about the program through the close-knit communities that characterize those two forces.
Therapists say that nearly all of their patients are motivated: To get better, to navigate their lives, to recover from a baffling condition that has fundamentally changed the way they think and act in ways all but invisible to the outside world.
Mild traumatic brain injury "can be a blessing and a curse," said Irene Spychalla, case manager for Project Share. "These guys look completely healthy. They're walking, they're talking. You don't realize they're struggling with their daily lives."
A Marine since 1998, Sgt. Orville Wempner, Jr. was sitting on a tarmac in Iraq in 2004 when a mortar landed nearby. He remained conscious but was left with pounding headaches for weeks afterwards.
A water purification specialist, Wempner grew perplexed after he started having trouble operating the enormous, 5-ton pumping machine whose internal workings he had mastered long before the blast. He began to carry around a small green notebook to write down all his tasks. One day, he was alone taking care of his 6-year-old daughter and he simply forgot to feed her dinner.
Wempner, a Minnesotan known to his friends as Junior, knew that something was wrong. His brain, he said, was like a car engine with miswired spark plugs.
Wempner said his brain "feels like it's misfiring. There are days that I'm sitting there and everything is clear and then there's more days when I'm confused, not knowing what I'm supposed to be doing, where I need to go."
Wempner entered the Project Share program in September. Therapists worked hard on helping him learn to organize and prioritize. They retaught him to make lists. They trained him how to keep a calendar with all his appointments written down.
Basic stuff. But for Wempner, they were the tools to getting his brain working right again.
"It does sound pretty simple and down to earth," he said. "But when you're not thinking clear … simple things like that don't really work."
Read more or listen to the story here: <http://www.npr.org/2010/12/21/132203864/philanthropist-provides-care-that-the-pentagon-wont>
Learn more about NPR and ProPublica’s investigation here: <http://www.npr.org/series/127402851/brain-wars-how-the-military-is-failing-its-wounded>
Helping Troops Recover from Brain Injuries
Morning Edition, November 28, 2005 · Men and women are returning from Iraq with more traumatic brain injuries than in previous wars. New armor protects the body, but the head is still vulnerable, particularly from car bomb blasts. For many, recovering from a brain injury is a long process. One innovative program is working to get troops back into the work force. Listen to the NPR broadcast.
A Wounded Soldier Struggles to Adapt
November 29, 2005 ·
Many of the men and women
who returned from Iraq with traumatic brain injuries may never fully
recover. As part of our Span of War series, we continue our story of
one soldier's attempt to grasp his new limitations and ultimately
head home to his wife and family in West Virginia. Listen to the NPR
Two Iraq Vets Learn to Live with Brain Injury
Day to Day, April 3, 2006 · Advances in combat medicine have helped more injured troops -- even those with severe head trauma -- survive their wounds. Jason Margolis of member station KQED profiles two young Iraq War veterans who suffered serious brain injuries and are now learning to live with their conditions as civilians. Listen to the NPR broadcast.
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