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From: TSS ()
Subject: NIH sends mixed signals on CJD brains
Date: April 7, 2005 at 7:17 pm PST

-------- Original Message --------
Subject: NIH sends mixed signals on CJD brains
Date: Thu, 7 Apr 2005 19:28:30 -0500
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy

##################### Bovine Spongiform Encephalopathy #####################

NIH sends mixed signals on CJD brains

By Steve Mitchell
Medical Correspondent

Washington, DC, Apr. 7 (UPI) -- A National Institutes of Health official
who told United Press International the agency might destroy its
collection of brains from human patients afflicted with a condition
similar to mad cow disease reportedly has told the head of a
patient-advocate group the collection would be preserved.

The official, Eugene Major, acting director of the basic neuroscience
program at the NIH, has not responded to e-mail or a phone call from UPI
seeking clarification of his remarks, and the official status of the
collection remains unknown.

As reported by UPI on March 24, the collection is stored in freezers by
the NIH's National Institute for Neurological Disorders and Stroke in
Bethesda, Md. It contains brains and other tissue samples from hundreds
of people who died from the brain-wasting illness Creutzfeldt Jakob
disease, as well as tissues from an untold number of experimental animals.

The consensus of scientists in this field is the collection, which dates
back to 1963, is invaluable for research and could even provide insight
into treatments for the fatal disorder. Currently, there is no cure for
CJD and patients typically die within a year after symptoms begin.

Florence Kranitz, president of the non-profit advocacy group CJD
Foundation, told UPI she had "a very long conversation" with Major, in
which he told her the remaining tissues in the collection would not be

"He reassured me in no uncertain terms," Kranitz said, noting
constituents of the foundation and other CJD advocacy groups had been
expressing concerns to her the tissues would be destroyed.

Kranitz, who has personal reasons for wanting the collection preserved
-- her husband died of CJD in 2000 -- said she plans to meet with Major
at the end of April to discuss the issue further.

CJD belongs to a group of diseases collectively known as transmissible
spongiform encephalopathies, or TSEs, that includes mad cow disease in
cows, chronic wasting disease in deer and elk, and scrapie in sheep. All
TSEs are incurable and fatal.

Major previously told UPI some samples already have been destroyed and
others have been given to researchers at the Food and Drug
Administration and the National Prion Disease Pathology Surveillance
Center in Cleveland.

Major said the remaining collection "has very little remaining value"
and could be destroyed if another entity does not claim them.

Bruce Johnson, a former NIH scientist who retired at the end of 2003,
said he had been told the collection would be destroyed in two years if
no one took the samples from the NIH.

In response to hearing that Major had failed to confirm to UPI the brain
collection would not be destroyed, Patricia Ewanitz, who lives in Port
Jefferson Station, N.Y., and is founder of the advocacy group CJD Voice,
said, "The brain tissue might not be indispensable to the National
Institutes of Health but it is absolutely necessary to the families who
thought enough of science to donate the brains, brain tissue and blood
in hopes of someday finding an answer to why their loved one died."

Ewanitz, whose husband died of CJD in 1997, added, "It now seems like
such a joke."

Terry Singeltary, whose mother passed away from a type of CJD in 1997,
said the NIH should use the samples for scientific research, not just
store them in freezers.

Both Singeltary and Ewanitz said they would feel more reassured if Major
verified in writing the collection will not be destroyed.

"I would go further and ask Major what he plans to do with them,"
Singeltary said. "If the samples are just going to sit up there and go
bad, then they should give them out to researchers looking for cause and

The revelation the NIH might destroy part or all of the collection
sparked an outcry from patient advocates, consumer groups and scientists.

Advocates have been contacting their members of Congress, urging them to
investigate and prevent the NIH from destroying the brains. Consumer
groups also have gotten involved and scientists have taken steps to
obtain the collection or have urged Major not to destroy the samples.

Felicia Nestor, who serves as a consultant to Public Citizen, told UPI
she had contacted certain legislators and at least one was considering
looking into the situation. Nestor asked the legislator's name be withheld.

Kranitz said Major also told her he plans "to advertise in professional
neurological journals and by whatever means necessary to make it known"
to researchers in the field the tissues are available.

Major previously said, however, that efforts to inform researchers of
the availability of the collection were already underway and included
informing NIH grantees. He added he had personally notified researchers
at scientific meetings, but no TSE researcher contacted by UPI was aware
of this.

"I was never informed," said Laura Manuelidis, an expert on these
diseases and section chief of surgery in the neuropathology department
at Yale University. She said the first she had heard of the situation
was in UPI's March 24 report.

Manuelidis also said she contacted Major, expressing interest in the
specimens, but so far has not received a response.

"I sent a letter to (Major) on (March 25) about our interest in these
specimens, but he has not replied," she told UPI in an e-mail.

Neil Cashman, a TSE expert at the University of Toronto, who said he was
not aware the samples might be destroyed, has lobbied colleagues at the
University of British Columbia -- where Cashman is scheduled to move to
this summer -- to help draft a letter requesting the collection.

The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit
organization consisting of more than 40 university and institute
researchers from the United States, Canada, the United Kingdom and
France, requested the collection in January, 2004. So far, the institute
has not been informed of a decision by the NIH.

Asked if Major had told him whether the collection would be preserved,
MIND Executive Director Harry Peery said, "We have heard nothing further
from Eugene Major or anyone else at the NIH regarding the brain collection."




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