Battle over science, money blocks widely recommended TBI therapy
WASHINGTON — Over 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 like counting, cooking and remembering directions to get home.
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.
Despite pressure from Congress and the recommendations of military and civilian experts, the Pentagon’s health plan for troops and many veterans does not cover the treatment — a limitation that could affect the tens of thousands of troops who have suffered brain damage fighting in Iraq and Afghanistan.
Officials with Tricare, an insurance-style program covering more than 4 million active-duty servicemembers and retirees, say the scientific evidence does not justify providing comprehensive cognitive rehabilitation.
But an investigation by NPR and ProPublica found that internal and external reviewers of a Tricare-funded assessment found it fundamentally misguided.
Confidential documents obtained by NPR and ProPublica show that reviewers called the Tricare study “deeply flawed,” “unacceptable” and “dismaying.” One scientist called the review a “misuse” of science designed to deny treatment for servicemembers.
Tricare’s stance is also at odds with that of other medical groups 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 is an effective treatment that would help brain-damaged troops. The National Institutes of Health and peer-reviewed studies have also endorsed cognitive therapy as a treatment for brain injury.
Tricare officials said their decisions are based solely on laws requiring scientific proof of the efficacy and quality of treatment. But the investigation found that Tricare officials have privately worried about the high cost of cognitive rehabilitation, which can cost $15,000 to $50,000 per soldier. With tens of thousands of troops and veterans suffering long-term symptoms from head injuries, treatment costs could quickly soar into the hundreds of millions, even billions of dollars — a crippling additional burden on the military’s 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 investigation, which was based on scores of interviews with military and civilian doctors and researchers, soldiers 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 who assessed 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.
Tricare officials defended the agency’s decision not to cover cognitive rehabilitative therapy and said it was not linked to budget concerns.
Navy Capt. Robert DeMartino, who directs Tricare’s behavioral health department, said the agency is mandated to ensure the quality and safety of medical care delivered to servicemembers. That consistency can be difficult with cognitive rehabilitation. Therapists design highly individualized treatment plans, often relying on a variety of different techniques. The holistic approach and lack of standardization make it hard to measure the effects of any single technique or treatment.
DeMartino said cost played no role in the agency’s decision, calling such a suggestion “completely wrong.”
Still, a handful of military and veteran facilities provide cognitive rehabilitation therapy or offer programs of limited scope. Most facilities don’t have the capacity.
Tricare was designed to fill in such gaps in the military health system by allowing troops and veterans access to civilian medical providers. Since Tricare has a policy against covering cognitive rehabilitation, servicemembers and retirees who seek treatment at one of the nation’s civilian rehabilitation centers would have their claims denied, or only partially paid.
Tricare will cover 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.
The conflicting 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 or never sought care because of Tricare’s refusal to pay for services.
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 placed him on medical retirement later that year, Wade struggled to find appropriate medical care for her husband. The closest VA hospital set up to handle Ted’s complex injuries was in Richmond, Va., a 320-mile drive from their home in North Carolina.
Tricare would not pay for cognitive rehabilitation at a nearby civilian rehabilitation program.
Wade, who once worked as an intern on Capitol Hill, began calling her representatives and meeting 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 Ted.
She now wants to move back to Washington, 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 the care he needs.
“We go to Capitol Hill like some people go to the grocery store,” Wade joked during a recent visit to Washington. “If we can’t figure it out, then probably nobody can.”
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 servicemembers.
The insurance industry is divided. Five of 12 major carriers will pay for cognitive rehabilitation therapy for head trauma, according to a recent survey. 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 Defense Secretary Robert Gates asking him to support funding for cognitive rehabilitation therapy. Then-Sen. Barack Obama led the group of 10 senators urging Tricare to pay for therapy.
Unanimous decision
In April 2009, 50 of America’s leading brain specialists gathered for two days of debate in a sterile hotel ballroom in suburban Washington.
The Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, the Pentagon’s lead program for the treatment of brain injury, convened the conference to help settle the debate about cognitive rehabilitation therapy.
The participants were leading researchers and doctors, both military and civilian, neurologists, neuropsychologists, psychiatrists, therapists, family doctors and rehabilitation experts.
Their unanimous conclusion was that cognitive therapy improved the thinking skills and quality of life for people suffering from severe and moderate head injuries. Soldiers suffering lingering problems from a mild traumatic brain injury, or concussion, would also likely benefit from the therapy, the experts concluded.
Shortly after the conference, officials from the military’s medical system met to discuss the findings at Tricare’s headquarters. One source, who did not want to be identified for fear of reprisals from the military, said money was one topic of discussion.
The Pentagon’s figures show that 188,000 servicemembers have suffered a brain injury since 2000. Of those, 44,000 suffered moderate or severe head injuries. Another 144,000 had mild traumatic brain injuries.
Previous ProPublica and NPR reports showed that number likely understates the true toll by tens of thousands of troops. Some estimates put the number of brain injuries at 400,000 servicemembers.
Studies suggest that while most soldiers with concussions heal quickly, some 5 percent to 15 percent suffer lasting difficulties in memory, concentration and multitasking.
For the military’s health system, the figures added up quickly. Tens of thousands of servicemembers and veterans authorized to receive cognitive rehabilitative therapy might result in a $4 billion bill, using high-end estimates for the cost of treatment from the Brain Injury Association.
The contract
In May 2009, Tricare issued a $21,000 contract to the ECRI Institute, a respected nonprofit research center best known for evaluating the safety of medical devices, records show.
The contract called for ECRI to review the available scientific literature to determine whether cognitive rehabilitation therapy helped patients with traumatic brain injuries.
ECRI graded the evidence for the benefits of cognitive therapy as being “inconclusive” or offering only “low” or “moderate” quality support of improvement in patients’ cognitive functions.
The final report, delivered to Tricare in October 2009, noted some areas of benefit. For instance, “tentative” evidence showed cognitive therapy significantly improved the quality of life for brain-damaged patients.
Overall, the report concluded, the evidence for most benefits from cognitive rehabilitation therapy remained inconclusive.
Tricare criticized
By summer 2009, ECRI researchers had finished a draft of the study. ECRI, later joined by Tricare, asked outside scientific experts to review it.
The reviews, according to interviews and copies obtained by NPR and ProPublica, were uniformly critical.
Some of the researchers accused Tricare of using a study that was designed to deny coverage to soldiers.
Wayne Gordon, director of the rehabilitation medicine at Mount Sinai School of Medicine in New York, called the review “dismaying” and “unacceptable.”
Karen Schoelles, ECRI’s medical director for the health technology assessment group, said the firm stood by its assessment. Cognitive rehabilitation “may be on to something,” Schoelles said. “But it needs more research.”
Last year, Congress ordered the Pentagon to conduct further studies to review the effectiveness of the therapy. The congressionally mandated studies have not begun. Results are not expected for several years.
Struggling for care
Sarah Wade said the military’s medical system forced her to patch together adequate care for Ted. Sometimes he would go to a VA hospital. Sometimes he would travel to Walter Reed Army Medical Center.
Tricare would have paid for some therapy, such as a physical therapist to help him learn to walk, but would not pay to retrain his brain.
In frustration, Wade personally visited a high-ranking official at the Veterans Affairs Department. The official ordered a local VA hospital to fund a special contract with a local civilian rehabilitation doctor near the Wade’s North Carolina home.
“Yes, we have been able to get [cognitive rehabilitation] paid for, but it’s been with a lot of fighting, red tape and bureaucracy,” she said. “It’s his greatest injury and the one that impacts his life the most, that impacts his ability to be a human. … It shouldn’t be this hard.”
The Wades credit the rehabilitation that Ted received with markedly improving his cognitive problems. After his 2004 injury, Ted spent months regaining consciousness. Doctors were unsure about his mental state, not certain he would ever talk or even think rationally.
Today, Ted speaks in slow, sure sentences, even cracking jokes. He can make decisions — choices that seem simple enough to someone with normal cognitive skills, but which often stymie those with brain injury.
He knows, for example, to buy cherry tomatoes at the store rather than big tomatoes, which are hard for him to chop and slice with only one arm. He can read through a menu, and pick food that’s nutritious. He can wash and fold his own laundry.
One recent day after dining at a Mexican restaurant in Washington, Ted smiled when Sarah reminded him that he was once unable to figure out whether he liked hot sauce on his tacos.
“It’s been a long, slow process,” he said.
