Science Slow to Ponder Ills That Linger in Anthrax Victims

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http://www.nytimes.com/2002/09/16/national/16LIMB.html

September 16, 2002

Science Slow to Ponder Ills That Linger in Anthrax Victims

By WILLIAM J. BROAD and DENISE GRADY

Every 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. "

Copyright 2002 The New York Times Company