NY Times 9/16: Science Slow to Ponder Ills That Linger in Anthrax Victims

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September 16, 2002

Science Slow to Ponder Ills That Linger in Anthrax Victims

By WILLIAM J. BROAD and DENISE GRADY

very day, Norma Wallace spends several hours reading a chapter or two in seven books. She favors history, philosophy, literature, math, puzzles and sometimes college entrance tests. It is all part of her strategy to fight the memory loss that has troubled her since the fall of 2001, when she became gravely ill with inhalation anthrax.

"I want to saturate my brain to keep it working and help it to recall information," said Ms. Wallace, 57, still on disability leave from her job as a mail processor at the postal center in Hamilton, N.J. "My short-term memory is coming back."

Her co-worker o says he does not feel so fortunate. The nightmares and cold sweats that marked the first months of his recovery from a probable case of skin anthrax have eased. But his health is poor, his mood dark and his anger high. He avoids people and work, he says, afraid he might explode. "I get too bent out of shape," he said. "My temper is short. Even when I drive, I get road rage."

For far longer than anyone had predicted, these two postal workers and many of the 15 other survivors of the anthrax attacks that began a year ago this week have been ill with symptoms their doctors cannot explain — fatigue, shortness of breath, chest pains, memory loss. In interviews, many say they communicate very little with one another, most fighting their battles alone, often confused, at times frightened.

These survivors are of great scientific interest, especially those who had the inhaled form of the illness, because in the past nearly everyone with inhalation anthrax died, and doctors have almost no information about recovery.

But only now is the government beginning to study their progress. While the Centers for Disease Control and Prevention in Atlanta has drawn blood from survivors to measure changes in their immune systems, it has not conducted comprehensive follow-ups or physical examinations. The reason, officials say, include a lack of trained personnel, red tape and a surfeit of competing demands.

Now another agency, the National Institutes of Health, has developed a plan to study the survivors. But some leading anthrax experts say that the work should have begun a year ago and that valuable information may have been lost in the meantime.

"It's very peculiar to me that these people haven't had the million-dollar work-up that they deserve," said Dr. Meryl J. Nass, an anthrax expert in Freeport, Me., who has advised one victim. "Nobody has made an attempt to gather them together and test them all for the same things and compare the results. That's how you make a determination of what's wrong with them."

Critics like Dr. Nass say survivors offer a rare chance to map the course of recovery and try to determine whether the disease has any long-term effects that might help explain the problems now confronting some of the survivors. Such information could help not only the survivors themselves but also future victims, should anthrax ever be used as a weapon again.

"It's a unique population," said Dr. Philip S. Brachman, an epidemiologist at Emory University who investigated anthrax outbreaks for the disease centers from the late 1950's to the 1970's.

Representative Dan Burton, chairman of the House Government Reform Committee, called the absence of follow-up studies until now a serious federal lapse. "They need to get on the ball and make sure they're following every single case closely," he said.

The Symptoms

Memory Loss, Fatigue, Rage

Besides her memory problems, Ms. Wallace still suffers from fatigue. She used to work two jobs, as a substitute teacher by day and a mail processor by night. Now she is not working at all. She hopes to return to work but is not sure when she will be well enough.

The uncertainty is even greater for her colleague Mr. o, 39, a maintenance worker who cut his forearm while fixing a jammed machine on the night of Sept. 18, 2001, when the Hamilton center processed the first wave of anthrax letters.

Mr. o developed the oozing wounds typical of skin, or cutaneous, anthrax. He may have been the first victim of the attacks. s, the Florida photo editor whose case was the first to be reported, fell ill in late September and died Oct. 5. But Mr. o's case is murky because early treatment with strong antibiotics by an alert physician cleared up his worst symptoms before the nation realized it was under attack.

"There's no question he had it," said his doctor, Dash. "But it probably will always be a suspected case."

Mr. o is now on antidepressants and talking regularly to a psychiatrist. But he is haunted by fear of unknown complications. A persistent pain has developed in his chest, and Dr. Dash recently sent him to a cardiologist.

"It comes and goes and I don't know what's causing it," Mr. o said. "It could be totally unrelated" to the anthrax spores that caused his arm to blister and swell. But he suspects that the spores not only contaminated his arm but also entered his chest.

Dianne Abbott, his girlfriend, said Mr. o was depressed. "Rich is not doing that good," she said. "His personality changed. He's very short-tempered."

The cloud of uncertainty, she added, is the worst part. "We can't get answers from anybody."

Another Hamilton employee, D. O'Donnell, who developed a severe case of cutaneous anthrax that put him in the hospital for a week, described symptoms similar to Mr. o's: fatigue, rage, depression, panic attacks. He said he was seeing a psychiatrist to avoid taking his anger out on anybody else, and he described himself as having gone from "Mr. Nice Guy" to "Mr. Bitter."

Another survivor, Hose, 60, also expressed frustration over his slow recovery. Mr. Hose contracted inhalation anthrax while handling mail for the State Department in Sterling, Va. Sometimes he thinks he is improving, but then he runs out of breath, his pulse and blood pressure start jumping around or he turns forgetful in a way that he never was before. He now needs inhaled asthma medicine to help him breathe, even though he never had asthma before.

Worst of all, he said, is the fatigue.

"You're tired all the time, that's what really gets you," he said. "You're not who you were before at all."

Recently, at a psychologist's urging, he began taking antidepressants.

Mr. Hose's physician, Dr. Mark Galbraith, an infectious disease specialist, said that not enough people had survived inhalation anthrax for doctors to know what to expect.

"We don't have a pathway, a textbook that says this is supposed to happen," Dr. Galbraith said. "We don't have enough experience with this to say, `In six months or three years this is where he should be.' "

With so few cases, Dr. Galbraith said, it is hard if not impossible to tell the difference between symptoms of anthrax and problems caused by aging or by the enormous physical and psychological stress of having suffered a severe illness and being the victim of a bioterrorist attack.

Fatigue can be hard to interpret, Dr. Galbraith said. "Is there some lasting metabolic effect from the toxin, or some underlying depression? This is one of the reasons one was hoping the C.D.C. could act as an investigative arm and find some commonality. We have no cases to refer to."

Leroy Richmond, who contracted inhalation anthrax at the Brentwood postal center, said he, too, tired easily and was struggling with memory problems. "I want my health to get back to where I would be able to get back to work," he said. "You'll never find anyone who enjoyed work as much as I did, and I really miss it."

The oldest and the youngest victims of the attacks seem to be among the few who have recovered completely. Ernesto Blanco, 74, returned to work early this year in Boca Raton, Fla., at American Media Inc., which publishes supermarket newspapers. Mr. Blanco said on a recent busy day that he was in very good health.

"I forget some things, but because of my age," he said from his post at American Media. "I'm like a fish in the water, honest to God."

The youngest survivor contracted cutaneous anthrax at the age of 7 months after his mother, a television producer, took him to visit her colleagues at the ABC studios in Manhattan. The infection, misdiagnosed for two weeks as a spider bite, became a systemic illness that caused a life-threatening blood disorder and kidney failure. The baby recovered fully, but his mother said doctors had cautioned her that kidney problems could in theory develop later, because the illness was so severe.

She added that the C.D.C. had shown little interest in his recovery, which surprised her because so little is known about the course of anthrax on such young children.

The Science

Lessons From the Dead

Many anthrax experts inside and outside the government — including epidemiologists and medical doctors — say that now that aggressive medical treatment has been shown to save the lives of people with inhalation anthrax, the government and the public have an important chance to study the quality of those lives and the natural history of the disease.

"This is a good opportunity to learn more," said Dr. Ezzell, a senior anthrax scientist at the Army's biodefense institute at Fort Detrick, Md.

Anthrax bacteria release deadly toxins that can travel throughout the body to attack tissues, kill cells and cause fluids to accumulate. In acute infections and especially in the pulmonary form of the disease, the symptoms include coughing, high fevers, hard breathing, chest pain and heavy perspiration. Victims can turn blue from lack of oxygen.

In interviews, many anthrax experts noted that victims who die are often found to have widespread damage to organs, including the brain. Many suffer delirium, seizures and coma in their final hours; autopsies suggest those symptoms may have been caused by pressure on the brain from accumulated blood and other fluids. Studies also show that anthrax toxins are usually present in high concentrations in the blood.

"So certainly," said Dr. Ezzell, "there may be an effect on survivors, and it would depend on how far along the people were" in fighting the disease.

Dr. H. , a pathologist at the University of Texas at Galveston who studied people who died in the 1979 Sverdlovsk anthrax outbreak in the Soviet Union, said survivors were faced with a real possibility of lingering illnesses and long-term side effects.

"It's a severe, life-threatening illness," he said. "Antibiotic kills the bug but doesn't repair the damage."

In studying autopsy material from Sverdlovsk victims, Dr. said, "we saw neuropathology," suggesting that the American survivors might have damage related to the brain. The lack of studies "is a blind spot for everybody," he said, adding, "We're much better in dealing with an emergency than its aftermath."

The Slow Start

Lessons From the Living

In the last year, the Centers for Disease Control and Prevention has collected blood from the survivors, hoping to gain information that will help researchers develop better diagnostic tests. But the agency has not studied the people themselves.

"We are in the process of getting their medical records," said Dr. Bradley Perkins, an anthrax expert at the disease centers. "They're all located in various states. Each state is different, and it has to be reviewed at federal and state levels before access is given."

"We are concerned about the chronicity of symptoms among the survivors," Dr. Perkins added. "That constitutes a surprise."

Because there are so few survivors, he said, it will be difficult if not impossible to draw solid conclusions from their experience. Nonetheless, if their problems persist, the agency may try to do a study comparing anthrax victims with people who survived other severe infections, to try to determine whether the lingering problems are specific to anthrax, or are common to other serious diseases as well.

The National Institutes of Health study getting under way is to examine the long-term health not only of last fall's victims (both from the skin and inhalation forms of anthrax) but of anyone who might be infected in the future, officials said. Run by the National Institute of Allergy and Infectious Diseases, the study is voluntary and to be done in cooperation with the survivors' physicians. Officials said no one is yet enrolled.

The study is to draw on the patients' medical records; the N.I.H. will supplement them with monthly blood tests, X-rays, CAT scans and other clinical examinations. Because of the memory lapses that some survivors are reporting, there will also be mental tests. The agency says it will probably pay the survivors' expenses to travel to its campus in Bethesda, Md.

"This research looks at the natural history of anthrax infection," said , head of the study and chief of the biodefense clinical research branch at the infectious diseases institute. "It's a way to help understand what happened to people exposed to Bacillus anthracis. It's in place and we're definitely ready to go."

The study team, she said, will involve 15 scientists, some from the disease centers in Atlanta, as well as Dr. Arthur M. Friedlander, a physician at Fort Detrick who is one of the nation's top anthrax experts.

Since last November, when the attack's last victim was identified, Dr. Friedlander has pressed for the nation's civilian agencies to do follow-up studies on the survivors. On his own, Dr. Friedlander said in an interview, he has managed to visit some of the survivors to make observations.

"It's vital that these studies be done," he said. "We need to learn as much as we can about this disease."

Mr. Hose, the State Department employee who contracted anthrax while handling mail, said he would welcome a chance to participate in the N.I.H. study. But he added, "It's a shame they haven't already started."

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