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25 Aug 2008

Source: Baltimore Sun, September 18, 2003

Anthrax survivors find life a struggle

Attacks: Debilitating symptoms dog those exposed to the spores, leaving most unable to work.

By Scott Shane, Sun Staff

Two years after the first major bioterrorism attack in U.S. history nearly killed them, most of the inhalation anthrax survivors are still suffering severe physical and psychological aftereffects that have left them unable to work.

"Some days I get up, and after an hour and a half I have to lie back down," says David R. Hose (case 20), 61, who was infected on his job at a State Department mail-handling facility.

Before he breathed in the microscopic spores, Hose says in an exhausted voice from his home in Winchester, Va., he was a healthy man who routinely put in 12-hour days handling heavy diplomatic mail pouches. Today, after the anthrax and a near-fatal bout of pneumonia, "I'm on three heart medications. I have asthma. I'm extremely weak."

Whoever dropped letters loaded with anthrax spores into a blue mailbox in the Princeton, N.J., business district Sept. 18 and Oct. 9, 2001, gave the nation a taste of the devastation that bioterrorism can cause.

The government rushed to spend billions of dollars stockpiling vaccines for smallpox and anthrax and bulking up defenses against the chance that al-Qaida might try germ warfare. Universities battled for biodefense grants and built high-security labs.

But on the human scale where the postal attacks found their random targets, some victims of the mailings feel lost in the shuffle. They struggle to get by on worker's compensation, fight over medical bills and feel as though they have borne the brunt of the mail attacks alone. Their anxiety is not eased by the fact that nearly two years into the FBI's costly, much-criticized hunt for the anthrax mailer, the culprit is still at large.

"These guys are also victims of terrorism," says Ramesh Patel, whose wife, Jyotsna Patel, 45 (case13), a New Jersey postal worker, survived inhalation anthrax and is still tormented by weakness, nightmares and crying bouts.

"I would say they should be treated like anyone who was at the World Trade Center or the Pentagon. But they've been completely forgotten."

The billions of spores that spewed from the anthrax letters infected 11 people with inhalation anthrax; six survived. That surprised experts, who had expected a death rate even with treatment above 75 percent. An additional 17 people developed the blackened skin sores of cutaneous anthrax; all recovered.

But though they are grateful to be alive, the inhalation anthrax victims still feel the effects of the anthrax toxin every day.

Fatigue, says New Jersey postal worker Norma J. Wallace (case 11), 58, "is a given at this point. The shortness of breath still comes. I still have joint pain."

By memorizing Bible verses and working through books of brain-teasers, Wallace says, she believes she has nearly overcome the memory problems that trouble the survivors.

Still, "I have to consciously focus on what I'm doing, or I lose my train of thought."

That's typical, says Dr. Tyler C. Cymet, who heads family medicine at Sinai Hospital and is assistant professor of internal medicine at the Johns Hopkins University School of Medicine. He has conducted telephone interviews with all but one of the six anthrax survivors every three months since late 2001.

His colleague, Dr. Gary J. Kerkvliet, an internist at Sinai with a Hopkins faculty appointment, continues to care for William R. Paliscak Jr., a criminal investigator for the U.S. Postal Inspection Service who has been severely ill since shortly after he was showered with anthrax-laden dust while removing an overhead filter at the Brentwood postal center in Washington.

Paliscak never tested positive for the Bacillus anthracis bacteria or its toxin, but Kerkvliet and Cymet are convinced that his debilitating illness resulted from his exposure.

They say they understand the bitterness of the survivors, who have gotten no special financial help or medical care from the U.S. government. Only one has been able to return to work - the oldest, Florida mailroom worker Ernesto Blanco (case 7), 75.

Cymet contrasts the lack of federal outreach with the Israeli government's rapid and sustained support for victims of terrorism, which he witnessed after responding to a bombing during a recent trip to Israel.

"It's not medicine's finest moment," Cymet says of the haphazard follow-up with the survivors. "We need leadership."

In his periodic 20-question telephone survey of the inhalation anthrax survivors, Cymet has found that five still report similar symptoms: weakness, memory problems, cold sweats, low-grade fever and headaches.

"It's tough to ferret out what's psychological, what's physiological and what's post-traumatic stress disorder," he says.

Cymet's informal survey appears to have reached more of the inhalation anthrax survivors than any other study, but he admits that his phone interviews are a poor substitute for a full-scale study. As a hospital doctor with a busy practice, it is all he can manage, he says.

One study of the anthrax survivors - cutaneous as well as inhalation - is being conducted by Dr. Mary E. Wright of the National Institute of Allergy and Infectious Diseases in Bethesda. Confidentiality rules prohibit Wright from naming participants, and she declined to give their number.

Of four inhalation anthrax survivors interviewed by The Sun, only one, Leroy "Rich" Richmond (case 14), a Brentwood postal worker who lives in Stafford, Va., said he was participating.

Wright's study seeks to understand "the natural history of anthrax" and to devise a protocol for the treatment of future victims, she says. Because the last case of inhalation anthrax in the United States before 2001 occurred in 1976, Wright says, "anthrax is new territory."

She says it's too early to discuss findings but expresses sympathy for the survivors. "I've talked to these people, too, and I understand their anger and frustration," she says.

Richmond, 58, says he still suffers from "continuous fatigue" and memory loss and is glad to be in Wright's study. But he feels the government's response to the victims should be more than just asking for cooperation with research.

"We've been cast aside. We're just an afterthought," he says.

If the official anthrax survivors feel neglected, Paliscak, the ailing postal inspector, has not even been given an official diagnosis of the illness that has shattered his life.

Paliscak, 39, was a hockey-playing, weight-lifting picture of health before following a supervisor's orders to remove an air filter above a heavily contaminated mail-sorting machine in the Brentwood postal center in October 2001.

A few days later, he fell severely ill. He has spent roughly half of the time since then in the hospital with severe breathing problems, mental confusion, extreme weakness and glandular dysfunction.

"He was heavily exposed to anthrax," says Kerkvliet, his physician. "And after that, physiologically, he fell apart." Months of testing found no cause other than anthrax for his ills, he says.

Kerkvliet says he is frustrated that the federal Centers for Disease Control and Prevention have not taken an interest in his patient's medical mystery. If Paliscak's case shows that a person can be devastated by anthrax exposure without testing positive, that could expose flaws in the testing regimen that should be corrected before any outbreak, Kerkvliet says.

It is little comfort to the survivors that their experience has fueled a bio-preparedness boom. This month, about the time the government announced $350 million in grants to create biodefense programs nationwide, Hose said he learned he will have to start paying $548 a month for health insurance. That's a quarter of his worker's compensation.

Meanwhile, the FBI's failure to catch the anthrax mailer has given rise to dark conspiracy theories on the part of several victims. Hose, for example, believes the anthrax mailings might have been a "black ops" government program designed to pump money into the biodefense and drug industries.

His thinking is based partly on the fact that the 2001 attack involved a few teaspoons of powder - not the scale to be expected from al-Qaida. Speculating about future attacks, Hose projects his suffering onto thousands of people.

"If they sprayed anthrax from the tops of buildings in 10 major cities, we'd be done for," Hose says. "The sick people would overwhelm the hospitals. And the spores don't die. They'd be out there forever."