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LETTER TO EDTOR: Care over research
Tuesday, August 26, 2008 Comment Print Listen Font Size Share Ask a Question You Report I, and every reader, can feel the pain and anguish of the family chronicled in The Times article "Hospital released vet who refused study" (Page 1, Friday). The disease mentioned, Creutzfeldt-Jakob disease, is devastating, unremitting and, as yet, without cure.
It is also difficult to sort out from other diseases with similar symptoms. Medicine does not know why it progresses more quickly in some people than in others. It is for these reasons that medical research is done - to understand better how to improve the chances of the next veteran who has such a problem.
In this case, a National Institutes of Health (NIH) study in which the Department of Veterans Affairs partnered with Mount Sinai Hospital, a world renowned academic medical center, was offered to the patient. The study was designed, as noted, to observe and to learn more about "conditions affecting memory or thinking, including Alzheimer's disease and related disorders." The research was to study the progression of disease, not to offer an experimental treatment. The study's consent form even states that "this study is not designed to benefit participants."
I can only apologize that Aimee Fitzgerald perceived a sense of callousness or a sense that there were some additional diagnostic or other measures to be offered as she sought answers to unanswerable questions about her ailing husband, Joe. It will renew our emphasis to VA staff about sensitivity in communicating. I and the VA completely share the view of bioethicist Arthur Caplan that the goal of the medical encounter must be first and foremost to provide the latest and best care when care is available, that research must take a secondary role to receiving patient care and that no one should be penalized for failing to volunteer for a study, ever.
It is the VA's policy - clearly stated in our regulations, directives, patient literature and the protocol consent form - that a patient has a right to say no to participating in a research study and that decision will not affect the VA health care or benefits the patient receives.
In serving our veterans, we have an absolute obligation to provide not only the highest quality care and to provide that care with attention and compassion, but to find better ways to care for our patients through research with the highest scientific and ethical standards. It is what we strive for every single day across our system. I can only apologize for the family's perception in this tragic case and to let them know that it will serve as a systemwide reminder about the importance of clear and compassionate communication.
DR. JAMES B. PEAKE
Secretary of veterans affairs
Washington
http://washingtontimes.com/news/2008/aug/2...-over-research/VA chief offers family apology Vet died after refusing research Audrey Hudson (Contact) Tuesday, August 26, 2008
The secretary of the Department of Veterans Affairs has apologized to the family of an Army veteran who died last year after being turned away from a Bronx VA hospital after he refused to participate in an Alzheimer's disease study.
Joe Fitzgerald, 74, died of Creutzfeldt-Jakob disease - the human form of mad cow disease - less than a month after being dismissed without diagnosis or treatment at James J. Peters VA Medical Center, The Washington Times reported Friday.
His widow, Aimee Fitzgerald, has demanded answers from the VA as to whether human research testing is taking a priority over the health care of veterans after the agency responded that the Alzheimer's study was a "mandate."
"I can only apologize that Mrs. Fitzgerald perceived a sense of callousness, or a sense that there was some additional diagnostic or other measures to be offered," Veterans Affairs Secretary James B. Peake said in a letter to the editor at The Times. "It will renew our emphasis to VA staff about sensitivity in communicating."
The VA has come under scrutiny and criticism over its human-subject experiments since a Washington Times/ABC News investigation revealed in July that the agency had failed to quickly notify participants in a smoking-cessation study about the potentially dangerous side effects of a drug some participants were taking.
A recent investigation of experiments conducted at an Arkansas veterans hospital uncovered rampant violations, including missing consent forms, secret HIV testing and failure to report more than 100 deaths of subjects participating in studies.
Mr. Fitzgerald sought treatment for his sudden loss of motor skills at the Bronx VA hospital when his attending physician, Dr. Ruth Walker, said that enrolling in the Alzheimer's study would enable a quicker diagnosis of his disease, Mrs. Fitzgerald said.
Dr. Walker introduced the family to Dr. Christine Bergmann, who headed the Alzheimer's study. VA officials said Dr. Bergmann did not have the authority to offer a diagnosis.
"I can only apologize for the family's perception in this tragic case and to let them know that it will serve as a system-wide reminder about the importance of clear and compassionate communication," Mr. Peake said in his letter to the editor.
The Times also reported that Arthur Caplan, one of the nation's premier medical ethicists and director of the Center for Bioethics at the University of Pennsylvania, said the first obligation of any caregiver is to treat the patient.
In his letter, Mr. Peake - a physician himself - said he and his agency "completely share Mr. Caplan's view."
http://washingtontimes.com/news/2008/aug/2...family-apology/CJD STAFF SGT. JAMES ALFORD 25
http://www.blackfive.net/main/2004/10/a_dying_hero_ss.htmlhttp://www.blackfive.net/main/2004/03/ssg_james_alfor.htmlhttp://brain.hastypastry.net/forums/archiv...php/t-3238.htmlPosted by: Sgt. B. January 25, 2005 at 10:34 AM
Friday, 11/03/06
Soldier's battle with disease continues to surprise family Brain-wasting rarity ended career in 2003
By LEON ALLIGOOD Staff Writer
James Alford turned 28 on Thursday under the watchful gaze of his parents, John and Gail.
No one expected that day would come, most certainly not the cadre of doctors who have examined him in the past three and a half years.
The physicians, every one of them, said he would die - and sooner rather than later.
In summer 2003, when Alford was 24 and a Green Beret based at Fort Campbell, he was diagnosed with the human variant of mad-cow disease, Creutzfeldt-Jakob disease.
The rare brain disorder produces severe behavior changes, failing memory, a loss of mobility and eventually leads to a coma and death.
But the decorated soldier, a veteran of fighting in Afghanistan and Iraq who was initially stripped of his Green Beret because of his illness, is still among the living, defying all expectations.
SNIP...END...TSS
Friday, August 22, 2008 Creutzfeldt Jakob Disease and Veterans and how they are treated at death UPDATED AUGUST 28, 2008
http://creutzfeldt-jakob-disease.blogspot....d-veterans.htmlTSS
Today, 04:49 PM