The Private War of Dr. Haley

Challenged by Ross Perot in 1994 to solve the mystery of Gulf War Syndrome, UT Southwestern epidemiologist Robert Haley was skeptical that he would find a real disorder. Now, as the 10th anniversary of the war rolls around, Haley’s reputation is on the li

THE SYNDROME

January 17 marks the 10th anniversary of the start of America’s 100-day war against Iraq. A decade after U.S. troops repelled Saddam Hussein’s invasion of Kuwait, a battle is still raging at home. Veterans’ advocates say that up to 100,000 of the 700,000 who served in the Gulf are sick with an ill-defined group of symptoms that have been lumped under the heading of Gulf War Syndrome. Does GWS represent psychosomatic disorders brought on by stress and the normal effects of aging? Or do its symptoms indicate a disease with a physical cause? Those questions are at the heart of a battle that could result in billions of dollars in compensation to veterans—or could prove GWS to be like so many recent medical scares: faulty science chasing after headlines and government grants.

Dr. Robert Haley stands firm on one side of the argument— American soldiers were poisoned by Iraq’s chemical weapons.

At 55, Haley is tall, balding, and folksy in a buzz-saw kind of way. He favors funky ties and smiles often, but his eye contact is penetrating. He gives the impression of a man who can process a lot of information in moments, zero in on the real issue, and come up with three possible solutions by the time you’ve finished telling him your problem.

And Haley has powerful allies. In addition to Perot and Hutchison, who is a ranking member of the Appropriations Committee, members of the Joint Chiefs of Staff and other Pentagon officials are urging him on.

Haley’s aggressive approach has also drawn powerful enemies: members of the medical research establishment, the entrenched defense bureaucracy, and members of Congress. He’s waged war with delight, firing back at his detractors in letters and in the pages of medical journals. The conflict has escalated. “I’m under full attack,” says Haley. “It’s fun to have somebody come after you. That means you’re contending with the issues.”

But other eminent scientists believe Haley’s love of combat caused him to step over the line from objectivity to advocacy. Will he prove to be the savior of Gulf War vets? Or has the scientist become so enamored of his own theory that he has deluded himself?

THE CHAMPION

When he answered his office phone in March 1994, Haley was less than thrilled to hear what his boss wanted. He was deep into research on transmission of Hepatitis C, a hot topic. “Could you come to my office tomorrow morning to meet with Ross Perot?” asked UT Southwestern president Kern Wildenthal. “He wants to talk about Gulf War Syndrome.”

“Oh, Kern, let’s not get into that,” Haley said. He didn’t know Perot, but he’d followed the research on symptoms reported by veterans of the 1991 Gulf War. “That’s post-traumatic stress disorder, malingerers. For a researcher, that’s career suicide.”

“No, no,” Wildenthal said. “We’re just going to advise him.”

The next morning, Haley met with Perot in Wildenthal’s office overlooking the medical school’s campus. A staunch military advocate, for decades Perot has helped veterans with health problems obtain medical care the military system couldn’t provide. Whenever Perot makes a public appearance, sick or injured vets show up.

“Let me tell you what I’m seeing,” Perot said. Gulf War vets were complaining of debilitating symptoms that rendered them unable to work. Doctors could find no physical cause for their ailments. Department of Defense studies had found no indication Gulf War vets had any higher rate of mortality, birth defects, or other diagnosable illnesses than counterparts who had not served. The complaints seemed to be stress-related. But Perot thought otherwise.

“It’s happening so often, it’s clearly unusual,” Perot said. “We need an independent study. If you guys here will do it, I’ll help you with funding.”

Intrigued, Haley agreed to look into it. “If this really is stress,” Haley warned Perot, “we’ll include measurements on that.”

“Fine,” Perot said. “If this is psychiatric or not physical, we’ll go on to something else.” Haley thought they’d be on to something else after a “quick and dirty” study.

THE MEDICAL DETECTIVE


Two weeks after his meeting with Perot, Haley attended a National Institutes of Health meeting on the issue. As he watched one angry confrontation between a veterans’ activist and a government researcher, Haley thought uneasily, “I’ve never attended a medical conference like this.”

Several hundred scientists, sick veterans, and activists descended on the NIH campus in Bethesda, Md., to talk about Gulf War illnesses. Though put off by rude activists, Haley also felt a thrill. He was getting a crash course in the competing theories of causes: nerve gas, pesticide in flea collars worn by troops to ward off insects, depleted uranium in munitions, anti-nerve-gas tablets, and anthrax vaccinations. Haley calls the turf battles in this field “vehement and almost violent.”

Clearly the medical researchers favored the stress theory. Activists insisted GWS was anything but psychological. Listening to the sincere but conflicting arguments, Haley found himself wondering, “Where is the case study?”

It was a question only a “shoe leather” epidemiologist would ask. From a medical family—his father, three brothers, and one son are physicians; another son is now in medical school—Haley had spent a decade as an officer of the Epidemic Intelligence Service, the medical corps of the Centers for Disease Control and Prevention.

The EIS philosophy is captured in its symbol, a shoe with a hole in the sole atop a globe. EIS “shoe leather” doctors keep their bags packed, ready to travel on a moment’s notice into epidemic situations. The EIS uses the “case definition” approach: come up with a statement describing the disease, find a group of people afflicted with it, identify risk factors, and work backward to the cause. This method was how scientists found the causes of toxic-shock syndrome and Legionnaire’s Disease.

That’s the opposite of the method favored by “seat of the pants” medical researchers: comparison of two populations for differences in symptoms. For diseases such as cancer, which take years to develop, such long-term studies are essential. But an epidemic—a dramatic outbreak closely linked to a cause—requires fast identification.

Even then, medical researchers have to be careful. Diseases with the same symptoms can have different causes. And publishing a study that cannot be replicated by other researchers can destroy a career.

Haley’s first epidemic was a defining one. In 1973, potentially deadly staphylococcus infections broke out among newborns at LA County General. After six weeks of practically living in the newborn nursery, Haley discovered that infections went up when the infant-to-nurse ratio got too high and nurses didn’t have time to wash their hands. His resulting paper became a milestone in hospital management and he later directed a small army of field researchers for a national study.

When Desert Storm erupted in early 1991, Haley was teaching epidemiology at UT Southwestern and attending patients at the Dallas VA Medical Center, which went on alert. But no casualties appeared. During the 100-day war, of 700,000 U.S. troops, only 133 were killed (in accidents or combat) and only 213 were wounded. But within three years, anecdotal stories of vets who returned from the Gulf healthy only to fall sick began to multiply. So far, of those who served, 120,000 have signed up on the DOD and Gulf War registries and undergone voluntary medical exams. About 18 percent of those have symptoms with no diagnosis, and about 3,000 have filed disability claims for “undiagnosed illness.”

Researchers know that in any population of 700,000 people, a certain number will get sick and die each year. GWS bears similarities to chronic fatigue, fibromyalgia, and “multiple chemical sensitivity,” so-called “yuppie diseases” that have no known cause or treatment.

But war does affect people. Soldiers get dysentery and contract tropical diseases. Under combat conditions—even of short duration—some troops will develop post-traumatic stress disorder.

Vietnam added a new dynamic: The defoliant Agent Orange contained trace amounts of dioxin, which was blamed for everything from sterility to lymphoma. But a 25-year study of Vietnam vets with heavy exposure to Agent Orange—the spraying crew involved in Operation Ranch Hand—showed no important differences in disease or mortality rates between them and civilians their age.

Few Gulf War veterans know anything about the Ranch Hand study. But they know that Agent Orange was bad and that when it was their turn to fight, Saddam Hussein threatened to use chemical weapons. What if they had been exposed to nerve gas? As complaints grew, the Clinton Administration created the Presidential Oversight Committee to monitor medical research.

While Haley listened to the scientists speak at the April 1994 conference, he realized that no researcher had used the epidemic investigation model. He would have to put on his medical detective hat from his decade with the EIS.

But first, Haley needed a case definition. Perot had compiled a list of 2,000 sick Gulf War veterans. Haley picked out 60 of the sickest and asked Perot to get their medical records. Within two weeks, the files arrived in his office. Haley pared those down to the 10 sickest, and again called Perot. He needed an independent source to do extensive medical work-ups. Perot agreed to send all 10 vets to the Mayo Clinic.


THE HEADLINES


On January 8, 1997, the editor of the prestigious Journal of the American Medical Association introduced Haley to a press conference at the National Press Club in Washington. He announced that Haley was the principal author of three studies published back-to-back in the most recent issue of JAMA, a rare occurrence signifying the importance of the research. “It’s not conclusive, but it’s a breakthrough,” the editor said, then let Haley announce his electrifying findings.

In the three years since Perot’s challenge, Gulf War Syndrome had grown into a cottage industry. Conflicting information made veterans believe the Pentagon, the DOD, and the White House were engaged in a cover-up. Only the day before, January 7, the government had released a major report concluding that stress is the primary cause. But that study was overshadowed by Haley’s bombshell. For two weeks after the press conference, UT Southwestern had to set up special phone lines to handle the flood of calls.

Haley announced his group had identified Haley Syndromes 1, 2, and 3, indicating some vets had suffered brain damage. Syndrome 1 correlated to use of military-issue insect repellent and flea collars containing Dursban;  Syndrome 2, seen in the sickest vets, was correlated to possible exposure to sarin gas; and Syndrome 3 correlated to ingestion of anti-nerve-gas tablets. Haley hypothesized that low-level exposure to these chemicals in combination affected the brain stem and basal ganglia.

Haley had used the workups of the 10 sick vets examined at the Mayo Clinic to devise an extensive questionnaire narrowing ambiguous symptoms down to specifics. From Perot’s registry, he contacted members of the 24th Reserve Naval Mobile Construction Battalion (Seabees), based in Columbus, Ga. Members of the  24th had traveled around the war zone, were easily located, and had become well known for their high percentage claiming GWS. Haley sent a letter signed by Perot asking for their participation, set up five testing sites across the Southeast, and told the vets Perot would be there to greet them.

Of 350 contacted, 249 veterans—sick and well—agreed to participate in the study. In each city, as the vets arrived, Perot would make a rousing two-minute welcoming speech, then leave on his private plane. (Ultimately, Perot would spend about $2.5 million on the UT Southwestern effort.)

Haley used a mathematical process called factor analysis to look for hidden symptom patterns, crunching numbers while listening to Mozart. As Mozart played, patterns emerged. He went from a skeptic to a believer. He’d found Haley Syndromes 1, 2, and 3.

From the 63 vets who had the syndromes, Haley picked out the 23 with the most typical patterns of symptoms and compared them to 20 matched controls: 10 who went but stayed healthy and 10 who didn’t go overseas. Though routine physicals found no differences among the groups, differences did emerge on sophisticated neurological tests of deep brain structures.

The JAMA articles received prominent play in the New York Times, the Washington Post, and on the major TV networks. Almost immediately, the scholarly skies lit up with rockets fired from opposing camps. Scientists wrote JAMA tearing the study apart, saying the sample size was too small, the symptoms too poorly defined, and the exposures impossible to measure. Haley met each barrage with his own salvo, defending his work and questioning other researchers’ competence and scientific integrity.

As the battle of words raged in medical journals, Haley’s sterling reputation hung in the balance. He knew that the researchers who first identified the cause of stomach ulcers as a bacterial infection instead of stress had also come under fire. But when other scientists were finally able to confirm their studies, the goats became heroes. Haley challenged his critics: “Prove me wrong.”

In the fall of 1997, Haley applied for a $13 million grant, far more than the government had available. Although the independent scientists on the peer review committee deemed much of his proposal “of low scientific merit,” at the urging of Perot and other supporters, the Secretary of Defense awarded him a $3 million contract to study 50 people. This contract would arouse the ire of Rostker—and lead Haley to a major breakthrough: the twins.

THE GREEN BERET


Brown hair, hazel eyes, 5-foot-7, 185 pounds, 48 years old, two siblings. Col. Bill Bates (he asked that D Magazine not use his real name) was answering the doctor’s routine questions when suddenly Dr. Haley looked up with a sharp glance. “You have a twin?” Haley asked. “Fraternal or identical?”

“Identical,” Bates answered.

To Haley’s astonishment, he had stumbled over scientific gold. Identical twins have the same DNA. In medical tests, healthy identical twins show the same results. Bill had gotten sick after serving in the Gulf War. His twin Bob didn’t serve. By testing both men, Haley could hone his theory of brain damage.

During the Gulf War, Bates served as commander of the 2nd Battalion, 5th Special Forces on the northern border of Saudi Arabia. Over the years, Bates had gone through numerous mandatory physicals. He’d passed them with flying colors.

Col. Jim Kraus, the commander of Army Special Operations Forces during the war, describes Bates as an “excellent officer” and a “disciplinarian with a sympathetic ear for his troops.”

But after the war, Bates’ health had deteriorated dramatically. He suffered joint aches, flu-like symptoms, adult-onset stuttering, mental confusion, and memory loss. Now on limited duty as an instructor at the Joint Forces Staff College in Norfolk, Va., Bates has such difficulty processing information that driving a car can be problematic. Giving an interview to a reporter seemed painful for him as he stammered while trying to answer questions, grasping for the correct word or trying to refresh his memory.

With Perot again picking up the $250,000 tab, Haley subjected Bill and Bob Bates to the most sophisticated and expensive tests focusing on deep brain structures. On most, Bill’s results differed from Bob’s only in ways too subtle to be significant. MRI tests also turned up nothing significant. But in a newer test called magnetic resonance spectroscopy (MRS), which measures chemical levels in the brain, Bill showed a marked difference from his brother.

Bill reported using military-issue insect repellent and ingesting anti-nerve-gas tablets. And by looking at the Green Beret’s private journal from the war, Haley locked in on the theory that Bill had been exposed to low levels of nerve gas on January 19-20, when Czech chemical warfare experts reportedly detected sarin. (The Pentagon and CIA say no evidence exists that any U.S. troops were exposed to nerve gas.)

Haley devised a new study using MRS; the sensational results appeared in the Journal of Radiology in early 1999. He showed veterans with damaged brain cells had a certain gene that produced lower levels of a blood enzyme that protects against nerve gas.

On close examination, the study had several problems. The sample was small and the exposures difficult to measure—or even to prove. And his sample may have been tainted. For example, when Haley gave the veterans a map of Saudi Arabia to pinpoint the locations of their units, many chose Sector 7, where nerve gas may have been released when U.S. troops destroyed Iraqi munitions.

“Their memories are not impaired,” Haley says somewhat defensively. But a 1997 study showed that a high percentage of Gulf War veterans asked about traumatic war events one month after the war gave different answers when asked the same question two years later. The problem with veterans’ memories is not new. For example, the government’s major study used to “prove” a high rate of post-traumatic stress disorder in Vietnam vets included six military women who said they had been POWs. No female troops were POWs.

Memory might be influenced by the lure of disability compensation. Only 1.5 percent of veterans in the 40th Seabees Battalion have applied for compensation for GWS. But 11.5 percent of those in the 24th have applied. During the war, the 40th was stationed across the street from the 24th.

Dr. Robert Haley had climbed way out on a limb. And Undersecretary Bernard Rostker began to saw it off.

THE BATTLE FOR MONEY

Since 1997, Haley has written 21 pieces in scientific journals, moving quickly from hypothesis to findings to possible treatments. After a Washington conference in June 1999, Johns Hopkins epidemiologist Dr. Jonathan Samet called Haley’s work “breathtaking,” but he was concerned that it relied on poor measures of symptoms and exposures. The findings were fascinating but might have nothing to do with the war. Samet pointed to the possibility of information bias—persons who report symptoms are also more likely to report exposures—and stressed the need for other scientists to independently replicate Haley’s work.

Rostker visited UT Southwestern in the spring of 1998; he seemed supportive. But Rostker’s backing eroded after the American Institute of Biological Sciences gave poor marks to Haley’s progress reports.

In response, Haley began challenging scientists who were working from different hypotheses. When Rostker hired researchers at the Rand Corporation to review the literature covering stress as a cause, Haley accused them of “scientific misconduct” for ignoring his paper on the subject. He demanded a retraction from a British research team that questioned his studies. Haley and Rostker exchanged a series of testy letters after the bureaucrat accused Haley of overstating evidence that troops had been exposed to nerve gas. For his part, Rostker demanded that an independent research team perform a larger study to replicate Haley’s work. Not about to surrender control, Haley proposed supplying his protocol to a contract research firm.

The battle has escalated. Rostker now has accused Haley of circumventing the peer review process by lobbying DOD, Congress, and the powerful VFW for $25 million to set up a Gulf War Illness Research Center at UT Southwestern. He may get it. Few scientists have as staunch and wealthy an advocate as Perot. On the day of the October Senate hearing, Perot gave a $1 million gift to the medical school to establish the U.S. Armed Forces Veterans Distinguished Chair for Medical Research, honoring Haley and Gulf War vets.

Once a skeptic, Haley has become a believer. He sees the attacks by Rostker and others as personal. “He’s taken all these events to make it look like I’m the bad guy,” Haley says. “Since I had completely disqualified all their arguments, they came after me.” He seems to accept little criticism from other scientists as valid.

Old science always fights against the new. If Haley is eventually proved right, he will become a hero, the lone scientist who defied conventional thinking to blaze a new trail. If the evidence mounts against him, his reputation will be in tatters.

One thing is certain. Robert Haley is on to something—and he’s in this battle too deep to back out.

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