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From: TSS ()
Date: March 24, 2005 at 6:39 am PST

-------- Original Message --------
Subject: NIH may destroy human brain collection
Date: Thu, 24 Mar 2005 08:21:26 -0600
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy

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

NIH may destroy human brain collection


WASHINGTON, March 24 (UPI) -- The National Institutes of Health may
discard part or all of a rare collection that includes hundreds of human
brain samples from patients that suffered from a disorder similar to mad
cow disease -- unless another researcher or institution takes them on,
United Press International has learned.

Several scientists said the collection, which is held by the NIH's
National Institute for Neurological Disorders and Stroke in Bethesda,
Md. -- and includes brains and other tissue samples from people
afflicted with the brain-wasting illness Creutzfeldt Jakob disease -- is
irreplaceable 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.

However, NIH officials in control of the collection's fate told UPI the
remaining samples are of little scientific value and may be disposed of
if researchers outside the agency do not claim it. That position stands
in sharp contrast with CJD experts who thought the collection should be

"It's invaluable," said Dr. Paul Brown, former medical director of the
NIH's Laboratory for Central Nervous System Studies, whose expertise is
in CJD and mad cow disease (also known as bovine spongiform
encephalopathy, or BSE).

The collection is badly in need of organization and no one is certain
how many brains or other tissue samples it contains, said Brown, who
worked with the collection since its inception in the 1960's until his
retirement last year. There could be brains, blood, spinal fluid and
various other tissues from 1,000 people or more, he said. Some of the
specimens would be of scientific use today, he said.

"This collection has the unique value of stretching back to the
beginning of when these diseases were discovered," Brown told UPI,
noting that the first samples were obtained in 1963. "It would be as
though you had in your hands the possibility of finding out when AIDS

Bruce Johnson, a former technician at the CNSS lab who worked
extensively with the collection before he retired in 2003, told UPI he
was told "in two years they (NIH officials)are going to destroy it, if
nobody wants it."

Eugene Major, acting director of the basic neuroscience program at the
NIH, said no specific timeframe had been established.

"We have not set a firm deadline date," Major told UPI. "We are working
very hard with investigators that we know in order to be able to make
sure that whatever we deem is valuable is potentially kept here." Some
samples already have been determined not to have any research value and
have been "removed and disposed of," he said.

Others samples have been given out to Dr. David Asher at the Food and
Drug Administration and Pierluigi Gambetti at the National Prion Disease
Pathology Surveillance Center in Cleveland, Ohio.

Major maintained the remaining collection was not particularly valuable
for research. "Whatever had been collected here that has not already
been distributed to responsible investigators who could use them really
has very little remaining value," he said.

Neither Asher nor Gambetti returned phone calls from UPI, but Brown said
he thought Asher had received only a dozen or two samples at most and
Gambetti had not received much at all.

Neil Cashman, a brain-disease researcher at the University of Toronto's
Center for Research in Neurodegenerative Diseases -- who has tried to
obtain the collection from the NIH -- said it was priceless.

"It would be like destroying an art museum," Cashman told UPI. "There's
all this information and insight that's locked up in these tissues and
if it's destroyed it will be lost forever."

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, United Kingdom and France,
also thinks the brain collection is invaluable.

"It is the opinion of the Board of Directors ... of The MIND Inc., that
the ... brain bank should not be broken up nor destroyed," said Harry E.
Peery, MIND's executive director, in a letter to UPI. "We believe that
this collection is of inestimable research value and should be kept intact."

The institute, at the University of Saskatchewan in Saskatoon, applied
for possession of the collection in early 2004, but received a letter
from the NINDS indicating the fate of the collection had not yet been

"We have heard nothing further since that time" and continue to be
interested in acquiring the complete collection, Peery said.

CJD belongs to a group of rare, brain-wasting disorders that are little
understood, incurable and fatal. This includes mad cow disease in cows,
chronic wasting disease in deer and elk. The most infamous of these
illnesses in humans is variant CJD, which people can contract from
eating beef products infected with the mad-cow pathogen.

Although vCJD has infected more than 154 people worldwide, only one case
has ever been detected in the United States -- in a Florida woman who is
thought to have contracted the disease while living in the United
Kingdom. However, the NIH brain samples have never been screened for
vCJD -- something Johnson thinks is critically important.

"No one has ever looked to see if any American (in the collection) in
the past had variant CJD," Johnson said. "You think it would be required
that they do that. You think it would be a Congressional mandate that
they test these brains: 'Let's see if we've got this disease in our

Johnson noted at least one brain in the collection he personally had
examined -- from a French woman collected in 1971 -- showed evidence of
possible vCJD infection, but the sample needed further study to be sure.

Other samples in the collection include the brains of patients who were
only 16 years old when they were diagnosed with CJD. This would be
unusual for sporadic CJD, because generally it strikes those over age
60. Variant CJD, on the other hand, typically occurs in patients in
their 20s or younger.

"I thought it was absolutely vital (to test these brains)," Johnson
said. "Maybe there's a dozen cases in there of variant CJD."

Major disagreed. "There's really no reason to do that," he said. "The
effort it would take to screen those samples ... would not give us any
new insights into variant CJD beyond what it is we already know."

Johnson said he was frustrated with the NIH administration's lack of
interest in preserving the collection or testing for vCJD. "They don't
understand," he said, "they honest-to-god don't understand what it's all

Patient advocates also objected to the possible destruction of the brains.

Terry Singeltary, whose mother died of a type of CJD called Heidenhain
variant in 1997, said he is outraged and families of other CJD victims
probably will be, too.

"A lot of these families went through a lot of heartache and a lot of
trouble to get these brain samples to the NIH," Singeltary told UPI.
"Now they're just going to discard them because they're not of
scientific use? That's just asinine. That stuff is valuable information."

Graham Steel, vice-chair of the Human BSE Foundation in the United
Kingdom, told UPI, "The potential loss of such important tissue samples
would be a massive blow for TSE (the group of diseases that includes CJD
and BSE) research in the United States. This should not be allowed to

Singeltary noted there currently is no cure for these diseases. "If you
don't have any answers yet, why would you throw these specimens away?"
he asked.

He added that more sensitive tests are just becoming available and could
help determine the origin of some of the CJD cases. "We've all been
sitting around waiting for more sensitive tests to get validated because
we want answers," he said.

"You know, it must be an embarrassment," Johnson said. "Some Senator is
going to eventually say 'What is NIH doing about mad cow disease?' And
people are going to scratch their heads and say 'not much'." He added,
"What's going to happen (is) one of these senators or their wife is
going to develop spontaneous CJD one day and ... there's going to be
hell raised and they're going to ask, 'Why isn't NIH working on this?'"


Copyright 2005 by United Press International
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######### ##########

-------- Original Message --------
Date: Mon, 21 Mar 2005 15:32:10 -0600
From: "Terry S. Singeltary Sr."
Reply-To: cjdvoice@YAHOOGROUPS.COM

Greetings CJD Voice,

Just a note, unsubstantiated reports I am getting is that NIH has
been considering destroying all CJD and TISSUE samples
from decades of collection. I suppose that these very sensitive
testing coming soon through the pipeline are just to much for them
too bare. Kinda like that cow in TEXAS they refused to test,
too scared what they would find, so they just rendered. OR,
like the positive, positive, inconclusives that all of a sudden turn
up negative, WITHOUT using western blot. all this makes perfectly
good sense to me, IF you are covering something up.

THE pain and stress families were in when NIH was wanting
these specimens for research, begging in some cases, for them to
discard in this manner, give away, incinerate, whatever, is inexcusable.
THE information in these archives are invaluable, they cannot be
replaced. JUST there point. ONE day, sooner rather than later,
they will be able to strain type, giving a source and route of infection.
believe me, there are routes and sources, plenty of them.
SIMPLY put, they want all evidence destroyed from the past before
this happens. ...............



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