Soldier first to get new 'mad cow' treatment
web-0314-a-alford.jpg
STAN CARPENTER / FILE
Spc. Amber Alford sits by her husband, Staff Sgt. James Alford, who has
Creutzfeldt-Jakob disease. The degenerative brain disorder assaults the
brain in a manner similar to the way mad cow disease affects cattle.
By LEON ALLIGOOD
Staff Writer
A Green Beret from Fort Campbell has become the first person in the
nation to receive a new drug treatment for the human variant of mad cow
disease.
Staff Sgt. James Alford, 25, a soldier who was awarded a Bronze Star and
deployed to Afghanistan and Iraq, is resting at his parents' home in
Karnack, Texas, after the first round of treatments.
His mother, Gail Alford, said it's too early to note any changes, but
the family watches him closely.
''His eyes are open. He recognizes us and laughs at us. He still likes
to watch movies and listen to country music. We'll take it day by day,''
she said.
Doctors hope the new treatment will stall or perhaps reverse effects of
the brain-wasting Creutzfeldt-Jakob disease. If so, it would be the
first treatment to give hope to CJD victims, who usually die within a
year of diagnosis.
On Feb. 19 doctors at Wilford Hall Medical Center, the hospital at
Lackland Air Force Base in San Antonio, drilled a small hole into the
right ventricle of Alford's brain and inserted a tiny tube that connects
to a small pump inserted beneath the skin above his right hip.
''It pumps the medicine into the brain over a 24-hour period
continuously, like an IV,'' Gail Alford explained in a telephone interview.
The medicine is pentosan polysulfate. While the drug is used in pill
form in the United States for relief of pain because of chronic bladder
inflammation and as an anti-coagulant, the drug in liquid form has not
been approved for use in this country.
Staff Sgt. Alford's story came into public view last fall when the
family disclosed how the Army had treated him. Not knowing that the
soldier suffered from CJD, the 5th Special Forces Group returned him
home from Iraq with the intention of booting him from the Green Berets.
Over 18 months, Alford had been transformed from someone who had been a
model soldier in Afghanistan to the unit's resident foul-up. His
superiors berated and demoted him for losing equipment, going AWOL and
repeatedly failing to carry out commands.
The soldier, who enjoyed a meteoric rise to staff sergeant early in his
career, fell from favor just as quickly. He was demoted in rank and
reassigned to trivial duties, with instructions that he carry a pen and
pad with him at all times to write down orders.
When his mother and father, John, and the staff sergeant's wife, Amber
(also a soldier serving in Iraq), saw him for the first time after he
was returned to Fort Campbell, they found him disoriented and very ill.
He was taken to several hospitals for tests.
After days of not knowing what had happened to their son and husband, a
doctor at the VA Medical Center diagnosed CJD.
The disease has become well-known because of cases in Britain, where the
cause has been traced to contaminated beef. Authorities think cattle
contracted the disease by eating feed containing meat and bone meal from
sheep infected with scrapie, which is a form of the disease that affects
sheep.
Last spring, before Alford lost his ability to speak, he told his family
he had eaten a sheep brain while assigned to Oman in 2001. However,
there is no evidence to link the direct transmittal of the disease from
a sheep to a human, according to the Centers for Disease Control and
Prevention.
The 5th Special Forces Group has apologized via letter and by visits
from group leaders to his family's home. In addition, the Army restored
Alford's rank, agreed to pay his medical bills and agreed to keep him on
active duty.
While there is no known cure for CJD, researchers in the United Kingdom
have been actively looking for a remedy. In January 2003 doctors there
introduced pentason polysulfate into the brain of a teen diagnosed with
the disease. Since then four other CJD patients in Great Britain have
received the experimental regimen.
The first case, an 18-year-old from Northern Ireland, has produced mixed
results. Reports in the British Medical Journal noted that the fact the
teen was still alive was remarkable, but it was unclear if the drug
would restore him and other treated CJD patients to a more independent
state. In its latter stages, the disease eventually leads to a coma and
a shutdown of vital organs.
''I've seen news reports that the teen has shown mild improvements, but
we'll just have to wait and see the long-term effects,'' said Dr. Eric
Halsey, Alford's doctor and an Air Force physician whose specialty is
infectious disease control.
''There are two reasons I chose to recommend this,'' Halsey said.
He said the staff sergeant's family was a strong advocate for the
procedure. In particular, Gail Alford, who is a nurse, thoroughly
researched the experimental drug therapy and was convinced it was worth
a try.
''She is persistent,'' he noted.
''But, also, I couldn't come up with an argument why we shouldn't try
this. This is his only shot. The disease is invariably fatal.''
Studies in Japan and the United Kingdom have shown pentosan polysulfate
to be successful in stopping the production of mutant proteins, known as
prions, that are thought to cause CJD.
''But all the studies have been in vitro, in the test tube. There have
been no studies in vivo, in the human body. The best we can hope for is
that what happens in the test tube will be replicated in the brain,''
Halsey said.
''It's all very theoretic at this time as to how it may help. One theory
is the drug's anti-inflammatory properties modulate the growth of the
prion proteins. And there may be other ways it helps that we don't even
know about now.''
Halsey said it took two weeks to secure permission for the procedure,
which the Federal Drug Administration and the Centers for Disease
Control had to approve.
In certain cases in which a patient's condition is undeniably terminal,
the FDA allows experimental therapies to be used even though their
effectiveness in humans is undemonstrated, Halsey explained.
While the procedure to implant the shunt and pump was routine, great
precaution was taken against accidental spread of the disease to the
surgical team or to anyone who might come into contact with tools used
in the surgery. All the equipment used was treated as hazardous waste
and was properly disposed of after the operation.
''It's not every neurosurgeon that wants to operate on someone with CJD.
It's not a procedure to be taken lightly,'' Halsey noted.
The infectious disease specialist said Alford's family would bring him
to Wilford Hall at Lackland once every month to six weeks for another
treatment. A few drops of pentosan polysulfate that's all that is
needed are mixed with a saline solution and pumped into the brain.
''We'll do a CAT scan on his brain each time and do blood work, as well,
to record any changes that may occur,'' Halsey said. ''I see this
continuing for the length of his life.''
The Alfords appreciate the effort, even though they understand there is
no guarantee for a cure. Equally important is that their son's integrity
and honor has been restored.
''The Army has done what they said they would do. They have restored my
faith,'' said John Alford, a retired sergeant major. He said several
high-ranking officers call weekly to check on his son's progress.
''They are calling him a wounded soldier, finally, and they are treating
him like one.''
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