Couple continues battle after soldier son's PTSD treatment-related death
CHARLESTON, W.Va. -- A Cross Lanes couple recently won a small victory in their battle to convince military medical experts to pull a drug they believe killed their 23-year-old son, and to push for counseling rather than medication as a way to treat post-traumatic stress disorder.
Stan and Shirley White's son, U.S. Marine Cpl. Andrew White, returned in good health from service in Iraq in 2005, only to spiral into the crippling grip of PTSD.
Andrew White's treatment, prescribed through military doctors, was heavy doses of medication -- including an antipsychotic drug called Seroquel -- for severe PTSD symptoms and pain from an injury. He died in his sleep in February 2008.
"We believe that is what caused his death. He went from taking 25 milligrams of Seroquel to 1600 milligrams when he died," Stan White said. "It was a lethal cocktail of antidepressants, antipsychotics and analgesics."
Last month, the Whites received word that military leaders had removed Seroquel from the "approved" formulary, effective March 28 -- which means that military doctors are advised not to prescribe the drug for PTSD treatment.
After four years of fighting to be heard, the Whites see the edict as a small victory in a much larger fight.
"It has to filter down," Shirley White said. "It has to go from the top to the prescribers."
They believe returning soldiers with PTSD should receive peer-to-peer and professional counseling, instead of the course of powerful medications their son received.
"I have yet to read about anyone who died as a result of counseling," Stan said. "We're not saying no one should take medicine, but they need to ask questions about what they're taking."
Stan and Shirley reluctantly embarked on their journey more than four years ago. The Cross Lanes couple had already faced the 2005 death of their son Robert, an Army staff sergeant who died in Afghanistan when a rocket-propelled grenade destroyed his Humvee. All three of the Whites' sons served in the military.
They were still struggling with his death when they found Andrew dead in his bedroom.
A toxicology report listed "fatal drug intoxication" as the cause of Andrew's death. He was taking Seroquel, Klonopin and Paxil exactly as prescribed by his Veterans Administration physicians, according to Shirley White, who monitored her son's intake.
As they absorbed the shock of their second son's death, the Whites immediately questioned the circumstances. Why would an otherwise healthy young man die in his sleep? They searched for answers and immediately discovered the deaths of other veterans in eerily similar circumstances. Three were West Virginians, who died in their sleep while taking the same medications for treatment of PTSD.
Since then, they and other military families have combed the Internet for newspaper accounts and obituaries from which they compiled a list, currently at 314, of soldiers and veterans who died in their sleep. Although they don't have access to medical records, they've spoken with many family members who confirmed that the soldiers were taking medications to treat PTSD.
California neurologist Dr. Fred Baughman contacted the Whites shortly after Andrew's death. Baughman is convinced that military doctors are overprescribing antipsychotic medications in combinations that cause cardiac arrest, often resulting in death.
In a news release from May 2010, Baughman described similar circumstances in the deaths of Andrew White and veterans Eric Layne, 29, of Kanawha City; Derek Johnson, 22, of Hurricane, and Nicholas Endicott of Logan County
"All were diagnosed with PTSD. All seemed 'normal' when they went to bed. And, all were on Seroquel [an antipsychotic] Paxil [an antidepressant] and Klonopin [a benzodiazepine] ... These were sudden cardiac deaths."
Seroquel is approved for the treatment of bipolar/schizophrenic patients, but Andrew was prescribed Seroquel for sleeplessness. At the 1,600-milligram dosage, his prescription was twice the maximum dose recommended for schizophrenic patients.
The Whites traveled to Washington four times to present information about Seroquel-related military deaths to members of Congress serving on veteran and medication oversight committees and testified at and FDA hearing about the dangers they perceive.
Some legislators met with them, while others sent a staff member. They all sympathized and often suggested studies of the issue. "We've had enough studies. Let's do something," said Stan White.
In 2009, the Whites and 34 other people were invited to testify at an FDA hearing on approval of Seroquel as a treatment for young children. They presented the stories of loved ones who died while taking Seroquel.
"In less than 30 minutes, the FDA voted to expand the approval," Stan White said. "It was a farce."
Discouraged advocates doubted their voices would ever be heard above those of lobbyists for the powerful pharmaceutical companies and their deep pockets.
They welcome the recent news that U.S. Central Command has removed Seroquel from the "approved" formulary, but are skeptical about when and if military doctors will follow the guidelines.
Still, it's a victory. Stan downplays their role in the drug's removal from the formulary and said many people brought the deaths and dangers to military leaders' attention
"Is this a result of our efforts? I'm not sure. We've rattled enough cages. It's all of us. Each of us has had an impact," he said of the many advocates and families of victims who have voiced concern.
@brfs:Treatment wish list
@bod:PTSD never goes away. It can only be controlled, in a manner similar to an alcohol or drug addiction.
The Whites would like the military to offer soldiers returning from combat peer-to-peer counseling rather than medication-only treatment. Stan White, who is the ski patrol director at Canaan Valley, backs an expert's suggestion that high-adventure activities for soldiers accustomed to the adrenaline rush of combat could be helpful treatment.
Veterans returning from combat today are offered more counseling options than those Andrew received in the early days of the campaign, but the help comes too late for others.
"We want to try to get to people before it before it becomes a fatality. We want to make the families aware that they must question the treatment before there is a loss," Shirley said.
They wonder if Andrew would still be alive if he'd had more options. As his anger, panic attacks and impatience increased and he showed classic symptoms of PTSD, Andrew's doctors only increased his medication. Shirley White fought for counseling for her son, who had been speaking with a counselor for just two weeks before he died.
"The VA will tell you that counseling is one of the first lines offered. That was not true in our case," she said. "We were so persistent. It took that persistence to get results."
Despite their struggles, the Whites say they support the military.
When the Whites' phones ring, they often hear the voice of a distraught mother or wife calling with another heart-breaking story about their healthy son or husband dying in his sleep. In a recent three-hour conversation with a bereaved mother, Stan said he and Shirley probably spoke for two minutes. The woman just needed to talk to someone who understood.
The conversations drain them. After that one, Shirley went to bed that afternoon and slept until the following morning. People ask them how they continue to offer support for people whose stories revive painful memories.
"We have chosen to deal with our loss this way," she said. Every now and then, they take a break from the research and advocacy efforts -- until the phone rings.
"You have to take that call," Stan White said. "We'd never refuse anyone."
To contact Stan and Shirley White, email firstname.lastname@example.org.
Reach Julie Robinson at email@example.com or 304-348-1230.