Monday, September 12, 2005

Update on SF SSG James Alford

In reading Thunder6's posting "The Silence of the Lambs" I was reminded of the story of Staff Sgt James Alford. The last update I had read was this one below which is from (I think) November, 2004. I'm wondering if anyone has any new information about his condition. I did a search but didn't find anything other that references to last fall. btw - I posted the story for those who have not read about SSG Alford since the link to The Tennessean comes up as an error now.

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.

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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