The Private War of Dr. Haley

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