CJD HGH BODY SNATCHERS
Saturday, January 26, 2008 CJD HGH BODY SNATCHERS HORMONE DRUGS LED TO CJD DEATH
09:00 - 26 January 2008
A Young mum died from the human form of mad cow disease after taking growth hormones as a child, an inquest heard.Ann Davies, known to friends and family as Anne, was diagnosed with the devastating Creutzfeld-Jakob-Disease in November 2004 after receiving lengthy treatment in the 1970s to help her grow.
She died on March 7 last year, aged 29.
The former Bishop's Cleeve pupil developed the disease after taking pituitary growth hormones extracted from humans before the drugs were withdrawn in 1985.
Family doctor Dr Neil Fraser, who had known her since 1984 when he treated her at Birmingham Children's Hospital, said she suffered congenital growth hormone deficiency shortly after birth.
He told the inquest she started the injections, which were administered three times a week, in 1980.
"The potential transmission of CJD from pituitary growth hormone was known in the 1970s," said Dr Fraser.
"It was thought the change in the method of extraction of the growth hormone from the pituitary glands would remove the agent causing CJD.
"While Ann would only have received this pituitary growth hormone prepared by this later method, her case and that of many others has sadly proved this not to be the case.
"I have no doubt Ann's CJD was caused by the transmission of the human form of the disease by growth hormone extracted from the pituitary gland."
A post mortem revealed the cause of death was CJD.
Recording a verdict of accidental death, Gloucestershire coroner Alan Crickmore, said: "I am satisfied from the evidence I've heard that from 1979 to 86 she did receive treatment designed to assist her in combating her lack of growth.
"Unfortunately she also received the chemicals which developed the disease. If she hadn't had the injections, she wouldn't have developed the disease."
CJD causes memory loss, personality changes and a loss of coordination. Sufferers usually die within six months of symptoms.
http://www.thisisgloucestershire.co.uk/displayNode.jsp?nodeId=231771&command=displayContent&sourceNode=231774&contentPK=19671559&folderPk=108867&pNodeId=231888
Greetings,
I am very sorry for the senseless loss of Anne.
Please accept my sincere condolences.
I cannot accept ;
Verdict: Accident. ???
in my opinion, it was nothing less than corporate and political homicide i.e. FOR PROFIT $$$ but in the eyes of the ones responsible, it was another calculated, expendable death, due to the incubation period, parties responsible knew they could get away with it. ...tss
SENATE
snip...
Mr Stachlewski—Dr Tony Adams started saying what I think is a fairly important set of issues regarding the perceptions of the government at that particular time. That program was taped in 1994. The significance of his statements speak for themselves. However, he goes on to say a number of other things apart from the fact that pituitary hormone patients, certainly those in the HGH area, were guineapigs. ‘Medical misadventure’ is used as a term and he goes on to talk about a variety of other areas. I think the important thing here to stress is that, when you talk about people being guineapigs, it is a rather intriguing little exercise, particularly since they are human guineapigs. I think Dr Tony Adams at that particular stage said what we all thought was the case—that it was an experimental program—and Allars subsequently put that into her paper and into her report.
snip...
In our particular submission to Allars we also looked at the independence of each of the committee structures so that there was seen to be independence from the government. The reason for suggesting that was that the government was involved, in the first instance, in the program, its development and administration, et cetera. It was also involved in the various committees. Dr Tony Adams goes on to say, and I quote from the transcript of the video tape:
They were over enthusiastic—
‘They’ being the doctors—
so some of the such guidelines that were in place were either ignored or fudged. To go over it again: the question was asked:
So patients welfare was sacrificed?
The answer was:
Unfortunately yes.
Tony Adams also said:
Here was a situation that should have been corrected earlier than it was and people concerned both in Government and in the Committees who were handing out the hormones were derelict in their duty in not stopping it sooner.
snip...
It is a fact the pituitary glands were not donated, so no record of the cadavers was ever kept. Ergo there is no way anyone can now go back and find out where the CJD originated. This is reprehensible. In our society grave robbing is illegal, is it not? For what they did was, indeed, grave robbing. When you take something from a dead body that you have not received permission for from the next of kin, and then proceed to exchange money for said body part, what else can it be called? When you harvest a portion of the brain from a patient who resides in a mental institution, when you fail to tell the recipients that the procedure is experimental and falsely state that the glands were donated and assure them of the product’s safety, as well as fail to inform of other safer procedures, isn’t that the grossest of neglect?
My safety and the safety of all the other victims in this case were never adequately protected at any time. The definition of ‘victim’ is a person who is harmed by or made to suffer from an act, circumstance, agency or condition. What is a person who is tricked, swindled or taken advantage of? A dupe. That is what I and all of my fellow victims are—dupes. We trusted and believed what we were told by those whom it is ingrained in us from childhood to trust—our doctors.
snip.
Mr Glen—Both of those are very good questions. If I may deal with the second one first, the situation—put very briefly—regarding the UK trial, which I was at myself so I am able to expand on that, was that the Hon. Mr Justice Morland ruled that the Department of Health in Britain was not negligent in relation to the deaths of those who had died from CJD before 1 July 1977 upon the basis that the state of knowledge prior to that date did not amount to negligence. For all those who were treated after that date, the government was liable, and for those families who had lost loved ones to CJD as a result of human growth hormone—one must remember that there is no HPG outside Australia— the government was liable. We are not talking about psychiatric injury; we are talking about deaths. Our clients were advised of that by way of letter when we arrived back from the UK. I have got the letter here. On 14 June 1996 we wrote a detailed letter to our clients. It opens with these words, ‘We now report to you on our trip to the UK and the USA,’ and it was a three-page letter. We did not know the result of the decision then, of course, because the judge had reserved his decision. Senator, does that answer the second part of your question?
Senator LIGHTFOOT—If you are saying that, yes, your clients were notified. Mr Glen—Yes, we did notify them then. After the decision had been announced— I think it was in August 1996—we notified them of the decision. Senator LIGHTFOOT—Shortly after the decision had been brought down? Mr Glen—That is right. We understand that parts of that judgment of the Hon. Mr Justice Morland are now under appeal by the plaintiff and the defendants. The first part of your question is also a good question because we believe the strongest part of our case against the government was on the issue of negligence in the running of the program as per the Allars report—that they owed our clients a duty of care and that there was a subsequent breach of that duty. The most difficult part of our claim was establishing psychiatric injury as a result of the government’s negligence. That, as I have indicated before, involved novel questions. Senator LIGHTFOOT—Have you advised your clients to accept damages for psychiatric injury? Mr Glen—Have we advised our clients? Senator LIGHTFOOT—Yes. Mr Glen—Our clients have been offered nothing for psychiatric injury. Senator LIGHTFOOT—But that was not my question.
snip...see full text 76 pages ;
http://www.aph.gov.au/hansard/senate/commttee/s9975723.pdf
CJD (Human Growth Hormone) Between 1959 and May 1985, 1800 children were treated under the National Human Growth Hormone Hgh) programme. There is a risk of CJD associated with some of the treatment.
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Case study: Background Some 1,800 children were treated under the National Human Growth Hormone (Hgh) programme. This ran from 1959 until May 1985 when Hgh was banned following the death of a recipient in England and two deaths in America from Creutzfeldt Jakob Disease (CJD).
The programme was initially under the control of the Medical Research Council, but from 1977 onwards was run by the Department of Health. It set out to restore growth patterns in children who would not otherwise have reached normal stature.
After the first death here, the programme was immediately stopped following consultation among the clinicians involved, and Hgh was replaced by a synthetic version. The human based product had been prepared from pituitary glands recovered from cadavers - pituitaries were routinely collected at post-mortem examination in mortuaries and it is estimated that over 960,000 pituitaries were harvested to make Hgh and/or other pituitary derived hormone treatments.
In 1992 the news generally broke that there was a risk of CJD associated with Hgh treatment, as the number of deaths rose. Sadly, we are now aware of at least 42 deaths from CJD in this group.
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Action As the numbers of CJD deaths began to rise, IM was first instructed to investigate matters in the early 1990s. We helped campaign with the families for a public inquiry but this was never granted, and as a last resort to try and find out what had happened and why, IM launched the Creutzfeldt Jakob Disease litigation in 1993.
This was divided into two groups - Group A on behalf of the victims of CJD and their families, and Group B for psychiatric injury claims for the 'worried well', who can only be told they have received potentially contaminated Hgh which may lead to this invariably fatal, dreadful neurological condition, for which there is still no test and no cure.
IM was one of the two firms on the Legal Aid Steering Committee running the litigation, and this was the first Legal Aid contract granted for a group action. This was also the first action brought in relation to any Hgh programmes anywhere in the world and the first successful pharmaceutical group action ever fought in the UK.
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Result Following the generic trial in 1996, Mr Justice Morland held that the Department of Health had been negligent for failing to suspend the Hgh programme as from July 1977.
Initially, the Judge's finding only covered new entrants on to the programme. IM successfully argued before the Court of Appeal in 1997 that the Judge should also be asked to consider those already receiving Hgh. The Judge subsequently accepted evidence from various clinicians, who confirmed they would also have suspended treatment for those already involved. This finding meant we were able to obtain compensation for the vast majority of families of those who had died, where either all or the majority of treatment had taken place after 1st July 1977.
The Department of Health agreed they would compensate any after-occurring cases of CJD which fell within the terms of the Judgment, and IM continue to be involved with most of those who develop this awful disease.
We also won the right to put forward claims for psychiatric injury for Group B, and the trial of six lead cases came before the Court in 1998. Subject to the proof of a frank psychiatric reaction to the awareness of the risk of CJD, these cases were also successful for those treated after 1st July 1977 with potentially contaminated Hgh. (A number of different preparation methods were used during the programme; more modern preparations were used from around mid-1982 and do not seem to be implicated in the crisis).
In what was the first case of its kind, Mr Justice Morland ruled the Claimants had suffered psychiatric injury as a result of being told they may develop CJD, and that their fears were rational. This success paved the way for a further 40 people to pursue psychiatric claims within the litigation, as well as numerous 'afteroccurring' claims.
All the lead psychiatric cases were successful and provided a range of cases for the Court. The Claimants were awarded between £3,500 and £300,000, including, in one case, the largest Smith v Manchester award (for disadvantage on the labour market) made at that time.
CJD has a long incubation period; new cases of CJD are regularly reported. Provisions have been made within the Queen's Bench Division of the High Court to accommodate claims for the foreseeable future.
For more information call 0870 1500 100 or drop us a line
http://www.irwinmitchell.com/RecentWork/CJDlitigation.htm
BMJ 1996;312:1057 (27 April)
News Trial begins into victims of CJD growth hormone The families of eight young people who died from Creutzfeldt-Jakob Disease (CJD) after being injected with human growth hormone as children began a test case against the Department of Health and the Medical Research Council in the High Court in London last week. The eight victims were among 17 people aged between 20 and 34 who developed the disease after treatment with human growth hormone between 1959 and 1985. Sixteen have died and the seventeenth is dying.
http://www.bmj.com/cgi/content/full/312/7038/1057
Creutzfeldt-Jakob Disease, CJD Support Group for short statured children of the 1970's and 1980's. Recommendations for Unapproved/Unregistered recipiants
http://mc2.vicnet.net.au/home/shortboys/web/cjdaustralia.html
Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob disease in the United States
http://cjdusa.blogspot.com/
BSE (Mad Cow) Update: Do Reports of sCJD Clusters Matter?
snip... see full text ;
http://cjdtexas.blogspot.com/
CJD QUESTIONNAIRE
http://cjdquestionnaire.blogspot.com/
CJD, they eye's have it and they could be stealing them from your loved one
http://www.mad-cow.org/dec99_news.html#bbb
Subject: RE-The Eyes Have It (cjd) and they could be stealing them from your loved one... "pay back time" Date: Sat, 16 Sep 2000 10:04:26 -0700 From: "Terry S. Singeltary Sr." Reply-To: Bovine Spongiform Encephalopathy To: BSE-L@uni-karlsruhe.de
######### Bovine Spongiform Encephalopathy #########
Greetings List Members,
I hate to keep kicking a madcow, but this still is very disturbing to me. Not only for the recipient of the cornea's, but as well, for the people whom would be operated on, using the same tools that were used to put those stolen cornea's in the recipient with. No history of this donor or his family (re-ffi), or anything would be known, using stolen organs and or tissue's. I just think this is not only wrong, but very dangerous to a great many other people, as this is one of the most infectious tissues of TSE's. It seems that this practice of stealing organ/tissue happens more than we think. Anyway, the family of the victim which had their cornea's stolen, are now suing. In the example I used with my Mother, if 3 months before, she would have been in a catastrophic accident (car wreck, whatever), no autopsy (for whatever reason), no family (for whatever reason), she lay in the morgue, and after 4 hours, they come steal the cornea's, lot of people could have been infected, just because of lack of medical history of donor/family. It may be hypothetical, but very real. We need to stop the spread of this disease.
kind regards, Terry S. Singeltary Sr., Bacliff, Texas USA ===========================================
Previous story--
Cadaver corneal transplants -- without family permission...
http://www.mad-cow.org/~tom/dec99_news.html#bbb
===============================================
Sept. 15, 2000, 11:39PM
Slain woman's family sues over missing eyes
By BILL MURPHY Copyright 2000 Houston Chronicle
The family of a woman who was stabbed to death last year has filed a lawsuit accusing the Lions Eye Bank of Houston of removing the woman's eyes without permission and inserting plastic discs in their place.
Daisy Diaz's relatives were horrified when they saw her body and noticed her eyes were missing, said their lawyer, Duncan Neblett III.
"They're a Catholic family," Neblett said. "They have strong beliefs about the body and burial. They were really upset by this."
Dorey Zidrow, the eye bank's spokeswoman, said she could not specifically discuss the Diaz case because it was in litigation. But Zidrow said a state law allows doctors to remove corneas -- the dime-sized lens near the eye's surface -- from a corpse without the family's permission.
The eye bank's usual procedure calls for removing the corneas, Zidrow said, but not the entire eyes.
"There are an awful lot of people who benefit from this program in the state of Texas," she said.
Diaz, 25, was stabbed to death in her apartment in the 400 block of Thornton in October. Her brother-in-law, 30-year-old Raudel Quiroz, is charged in the killing but has not been caught.
Neblett said authorities have told him Quiroz may have returned to his native Guatemala.
Neither Diaz nor her family had given permission to donate any of her organs, Neblett said.
Although state law allows corneas to be removed from corpses without first gaining the family's permission, they cannot be removed over the family's stated objection.
The eye bank is located at, and staffed by, the Baylor College of Medicine, and receives part of its funding from the Lions Club.
The Diaz lawsuit is the second such suit to be filed against the eye bank in recent years.
The family of Levi Perry Jr., a Houston teacher shot to death in MacGregor Park in 1994, also alleged in their suit that Perry's eyes were removed. The family was awarded $345,000 from the eye bank in April 1999.
http://www.chron.com/cs/CDA/story.hts/metropolitan/669555
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THE LEGALITY OF STEALING ORGAN/TISSUE...
TEXAS STATUTES
Sec. 693.012. Removal of Corneal Tissue Permitted Under Certain Circumstances.
On a request from an authorized official of an eye bank for corneal tissue, a justice of the peace or medical examiner may permit the removal of corneal tissue if:
(1) the decedent from whom the tissue is to be removed died under circumstances requiring an inquest by the justice of the peace or medical examiner;
(2) no objection by a person listed in Section 693.013 is known by the justice of the peace or medical examiner; and
(3) the removal of the corneal tissue will not interfere with the subsequent course of an investigation or autopsy or alter the decedent's postmortem facial appearance.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.012 -------------------------------------------------------- TEXAS STATUTES Sec. 693.003. Consent Required in Certain Circumstances.
(a) A medical examiner or a person acting on the authority of a medical examiner may not remove a visceral organ unless the medical examiner or person obtains the consent of a person listed in Section 693.004.
(b) If a person listed in Section 693.004 is known and available within four hours after death is pronounced, a medical examiner or a person acting on the authority of a medical examiner may not remove a nonvisceral organ or tissue unless the medical examiner or person obtains that person's consent.
(c) If a person listed in Section 693.004 cannot be identified and contacted within four hours after death is pronounced and the medical examiner determines that no reasonable likelihood exists that a person can be identified and contacted during the four-hour period, the medical examiner may permit the removal of a nonvisceral organ or tissue.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.003 -------------------------------------------------------- PLEASE NOTE; the bottom would only pertain to those who know of the law. if you don't know about it, you cannot dispute, so in four hours, they can legally remove body organs, as long as they don't disfigure. and who is to know the difference? makes me wonder of some of my dead relatives, and if they were burried with their eye's and or any of their organs. This is very disturbing, if not for moral reasons, but for the risk of dangerous pathogens (human TSE's, etc.) to be transmitted. only time will tell, but i am very disturbed. these laws are not morally correct. They should be re-written as to they cannot so easily take your organs, with no one knowing. The Family or Victim, must consent. There should be some kind of research on donor/family medical history...TSS --------------------------------------------------------
Sec. 693.013. Persons Who May Object to Removal.
The following persons may object to the removal of corneal tissue:
(1) the decedent's spouse;
(2) the decedent's adult children, if there is no spouse;
(3) the decedent's parents, if there is no spouse or adult child; or
(4) the decedent's brothers or sisters, if there is no spouse, adult child, or parent.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.013 ------------------------------------------------------- to cover one's butt....
Sec. 693.014. Immunity From Damages in Civil Action.
(a) In a civil action brought by a person listed in Section 693.013 who did not object before the removal of corneal tissue, a medical examiner, justice of the peace, or eye bank official is not liable for damages on a theory of civil recovery based on a contention that the person's consent was required before the corneal tissue could be removed.
(b) Chapter 104, Civil Practice and Remedies Code, applies to a justice of the peace, medical examiner, and their personnel who remove, permit removal, or deny removal of corneal tissue under this subchapter as if the justice of the peace, medical examiner, and their personnel were state officers or employees.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.014
[[[as you can see, they knew it was wrong when they wrote the laws. or they would not have covered the rear-ends so well...TSS]]] --------------------------------------------------------- thanks again, kind regards, Terry S. Singeltary Sr.
############ http://mailhost.rz.uni-karlsruhe.de/warc/bse-l.html ############
----- Original Message ----- From: Terry S. Singeltary Sr. To: jgoodman@cber.fda.gov Sent: Friday, September 01, 2006 2:49 PM Subject: RE- FDA FORMS TASK FORCE ON HUMAN TISSUE SAFETY
http://www.microbes.info/forums/index.php?showtopic=375
JOHN CORNYN
TEXAS
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
April 26,2005
Mr. Terry Singeltary P.O. Box 42 Bacliff, Texas 77518
Dear Mr. Singeltary:
In response to your recent request for my assistance, I have contacted the National Institutes ofHealth. I will write you again as soon as I receive a reply.
I appreciate having the opportunity to represent you in the United States Senate and to be of service in this matter.
Sincerely,
JOHN CORNYN United States Senator JC:djl
===============
JOHN CORNYN
TEXAS
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
May 18,2005
Mr. Terry Singeltary P.O. Box 42 Bacliff, Texas 77518
Dear Mr. Singeltary:
Enclosed is the reply I received from the Department of Health and Human Services in response to my earlier inquiry on your behalf. I hope this will be useful to you. I appreciate having the opportunity to represent you in the United States Senate.
Thank you for taking time to contact me.
Sincerely,
JOHN CORNYN United States Senate JC:djl Enclosure
DEPARTMENT OF HEALTH & HUMAN SERVICES
National Institutes of HealthNational Institute of NeurologicalDisorders and Stroke NINDS Building 31, Room 8A52 31 Center Dr., MSC 2540 Bethesda, Maryland 20892-2540 Phone: 301-496-9746 Fax: 301-496-0296 Email: [log in to unmask]
May 10, 2005
The Honorable John Cornyn United States Senator Occidental Tower5005 LBJ Freeway, Suite 1150 Dallas, Texas 75244-6199
Dear Senator Cornyn:
Your letter to the National Institutes of Health (NIH) forwarding correspondence from Mr. Terry S. Singeltary, Sr., has been forwarded to me for reply. Mr. Singeltary is concerned about thepreservation of Creutzfeldt-Jakob disease (CJD) brain samples that have been maintained by theNational Institute of Neurological Disorders and Stroke (NINDS) Intramural Research programfor many years.
I am sorry to learn that Mr. Singeltary's mother died of CJD and can certainly understand hisdesire that any tissues that could help investigators unravel the puzzle of this deadly disease arepreserved. I hope he will be pleased to learn that all the brains and other tissues with potential tohelp scientists learn about CJD are, and will continue to be, conserved. (The tissues that arediscarded are those that have either decayed to an extent that renders them no longer appropriatefor research or those for which we do not have sufficient identification.)
The purpose of gathering these brains and tissues is to help scientists learn about CJD. To that end, some of the NINDS-held samples are distributed to investigators who can demonstrate thatthey have a compelling research or public health need for such materials. For example, sampleshave been transferred to NIH grantee Dr. Pierluigi Gambetti, who heads the National PrionDiseases Pathology Surveillance Center at Case Western Reserve University in Ohio and workswith the Centers for Disease Control and Prevention to monitor all cases of CJD in the UnitedStates. Dr. Gambetti studies the tissues to learn about the formation, physical and chemicalproperties, and pathogenic mechanisms of prion proteins, which are believed to be involved inthe cause of CJD. Samples have also been transferred to Dr. David Asher, at the U.S. Food andDrug Administration, for use in assessing a potential diagnostic test for CJD.
Page 2 - The Honorable John Cornyn
in closing, we know that donating organs and tissue from loved ones is a very difficult andpersonal choice that must often be made at the most stressful of times. We at the NINDS aregrateful to those stalwart family members who make this choice in the selfless hope that it willhelp others afflicted with CJD. We also know the invaluable contribution such donations maketo the advancement of medical science, and we are dedicated to the preservation of all of thetissue samples that can help in our efforts to overcome CJD.
I hope this information is helpful to you in responding to Mr. Singeltary. Sincerely,
Story C. Landis, Ph.D. Director, National Institute ofNeurological Disorders and Stroke
==================================
NIH says it will preserve CJD brains By STEVE MITCHELL
WASHINGTON, May 31 (UPI) -- The National Institutes of Health apparently has reversed its position on the fate of an invaluable collection of brains from people afflicted with a condition similar to mad cow disease, saying in a letter to a U.S. senator it will not destroy the collection.
An NIH official had told United Press International previously that the brain collection, which consists of samples from hundreds of people who died from the brain-wasting illness called Creutzfeldt Jakob disease, could be discarded if another entity does not claim them.
That sparked an outcry from patient-advocacy groups, consumer watchdogs and scientists, and the agency now appears to have backed away from that course.
"All the brains and other tissues with potential to help scientists learn about CJD are, and will continue to be, conserved," Story Landis, director of the National Institute of Neurological Disorders and Stroke, which oversees the brain collection, wrote in a May 10 letter to Sen. John Cornyn, R-Texas.
Cornyn had inquired about the status of the collection in April.
Last March, Eugene Major, acting director of the basic neuroscience program at the NIH, told UPI the useful portions of the collection had been doled out to scientists and the remaining samples had "very little remaining value" and could be destroyed.
Landis could not be reached for comment Tuesday. NINDS spokesman Paul Girolami told UPI he had been unable to locate her.
Scientists think the collection, which dates back to 1963, is invaluable for research on CJD and similar diseases and could even provide insight into treatments. There is no cure for CJD and patients typically die within a year after symptoms begin.
"Absolutely, the collection is worth keeping," Bruce Johnson, a former NIH scientist who said he had been told the collection would be destroyed in two years if no one took the samples from the agency, told UPI.
The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 researchers from several countries, offered to take the collection off of NIH's hands more than a year ago and so far has not heard anything from the agency, Harry Peery, MIND's executive director, told UPI.
CJD belongs to a group of incurable and fatal 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.
Variant CJD, or vCJD, is a relatively new TSE, which people can contract from consuming beef products infected with the mad cow pathogen.
Despite Landis' assurance the collection will be preserved, some family members of the patients who donated their brains to the NIH are still skeptical. This is because the wording Landis used in the letter leaves open the possibility that some brain samples are being destroyed.
"The tissues that are discarded are those that have either decayed to an extent that renders them no longer appropriate for research or those for which we do not have sufficient identification," Landis wrote.
"Which ones" are being destroyed? asked Terry Singeltary, who is involved with several CJD patient groups.
"With a system like this, they could destroy whatever and whenever they wanted, for whatever reason they wanted," Singeltary, whose mother died of CJD in 1997, told UPI.
"It's a perfect excuse to discard some suspicious tissue resembling vCJD or some atypical TSE related to animal TSEs in the USA," he added.
Although the collection includes samples from CJD patients as young as 16 that could make them candidates for possible vCJD, the brains have never been screened for evidence of the disease. The only confirmed vCJD case in the United States occurred in a Florida woman who is thought to have contracted the disease in England.
Johnson said he along with renowned CJD expert Paul Brown were in the process of sorting through the samples to match them up with patient identification documents until they both retired. Some of the samples may prove impossible to identify, he said, but he and Brown are the only ones familiar enough with the collection to organize it and neither has been asked back by the agency to aid in the identification process.
Steve Mitchell is UPI's Medical Correspondent. E-mail: [log in to unmask]
Copyright 2005 by United Press International. All Rights Reserved.
http://washingtontimes.com/
http://www.sciencedaily.com/
Wednesday, January 02, 2008
Risk factors for sporadic Creutzfeldt-Jakob disease
http://creutzfeldt-jakob-disease.blogspot.com/2008/01/risk-factors-for-sporadic-creutzfeldt.html
(Not to forget about the potential for some BSE cases to come from vaccinations containing pituitary-derived SRMs.)
TWA LITTLE minute
http://www.bseinquiry.gov.uk/files/yb/1988/06/10001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/13010001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/14006001.pdf
COMMERCIAL IN CONFIDENCE
http://www.bseinquiry.gov.uk/files/yb/1988/09/06005001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/10/06005001.pdf
NOT FOR PUBLICATION
http://www.bseinquiry.gov.uk/files/yb/1988/11/01012001.pdf
http://www.bseinquiry.gov.uk/yb/1988/11/04003001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/04/00007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/07/00007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/09/00004001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/10/00003001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/04001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/26007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/30001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/09/06011001.pdf
NON-LICENSED HUMAN TISSUE DEVICES WERE NOT COMMERCIALLY AVAILABLE
snip...
I was quite prepared to believe in unofficial pituitary hormones, also in the 1970's, whether as described by Dr. Little, or in other circumstances, for animal use.
snip...
The fact that there were jars of pituitaries (or extract) around on shelves is attested by the still potent 1943 pituitaries, described in Stockell Hartree et al. (J/RF/17/291) which had come from the lab. at Mill Hill. Having taken the trouble to collect them, they were not lightly thrown out...
http://www.bseinquiry.gov.uk/files/ws/s467bx.pdf
more on the 1968 medicine act, they forgot to follow
http://www.bseinquiry.gov.uk/files/yb/1989/01/30008001.pdf
Draft cover letter to product licence holders (considered by Human and Vet Medicines including deer)
http://www.bseinquiry.gov.uk/files/yb/1989/02/22008001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/02/22011001.pdf
(It was noted with concern that hormone extracts could be manufactured by a veterinary surgeon for administration to animals under his care without any Medicines Act Control.)
http://www.bseinquiry.gov.uk/files/yb/1988/06/08011001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/07010001.pdf
TWA LITTLE STATEMENT 331
http://www.bseinquiry.gov.uk/files/ws/s331.pdf
TSS
09:00 - 26 January 2008
A Young mum died from the human form of mad cow disease after taking growth hormones as a child, an inquest heard.Ann Davies, known to friends and family as Anne, was diagnosed with the devastating Creutzfeld-Jakob-Disease in November 2004 after receiving lengthy treatment in the 1970s to help her grow.
She died on March 7 last year, aged 29.
The former Bishop's Cleeve pupil developed the disease after taking pituitary growth hormones extracted from humans before the drugs were withdrawn in 1985.
Family doctor Dr Neil Fraser, who had known her since 1984 when he treated her at Birmingham Children's Hospital, said she suffered congenital growth hormone deficiency shortly after birth.
He told the inquest she started the injections, which were administered three times a week, in 1980.
"The potential transmission of CJD from pituitary growth hormone was known in the 1970s," said Dr Fraser.
"It was thought the change in the method of extraction of the growth hormone from the pituitary glands would remove the agent causing CJD.
"While Ann would only have received this pituitary growth hormone prepared by this later method, her case and that of many others has sadly proved this not to be the case.
"I have no doubt Ann's CJD was caused by the transmission of the human form of the disease by growth hormone extracted from the pituitary gland."
A post mortem revealed the cause of death was CJD.
Recording a verdict of accidental death, Gloucestershire coroner Alan Crickmore, said: "I am satisfied from the evidence I've heard that from 1979 to 86 she did receive treatment designed to assist her in combating her lack of growth.
"Unfortunately she also received the chemicals which developed the disease. If she hadn't had the injections, she wouldn't have developed the disease."
CJD causes memory loss, personality changes and a loss of coordination. Sufferers usually die within six months of symptoms.
http://www.thisisgloucestershire.co.uk/displayNode.jsp?nodeId=231771&command=displayContent&sourceNode=231774&contentPK=19671559&folderPk=108867&pNodeId=231888
Greetings,
I am very sorry for the senseless loss of Anne.
Please accept my sincere condolences.
I cannot accept ;
Verdict: Accident. ???
in my opinion, it was nothing less than corporate and political homicide i.e. FOR PROFIT $$$ but in the eyes of the ones responsible, it was another calculated, expendable death, due to the incubation period, parties responsible knew they could get away with it. ...tss
SENATE
snip...
Mr Stachlewski—Dr Tony Adams started saying what I think is a fairly important set of issues regarding the perceptions of the government at that particular time. That program was taped in 1994. The significance of his statements speak for themselves. However, he goes on to say a number of other things apart from the fact that pituitary hormone patients, certainly those in the HGH area, were guineapigs. ‘Medical misadventure’ is used as a term and he goes on to talk about a variety of other areas. I think the important thing here to stress is that, when you talk about people being guineapigs, it is a rather intriguing little exercise, particularly since they are human guineapigs. I think Dr Tony Adams at that particular stage said what we all thought was the case—that it was an experimental program—and Allars subsequently put that into her paper and into her report.
snip...
In our particular submission to Allars we also looked at the independence of each of the committee structures so that there was seen to be independence from the government. The reason for suggesting that was that the government was involved, in the first instance, in the program, its development and administration, et cetera. It was also involved in the various committees. Dr Tony Adams goes on to say, and I quote from the transcript of the video tape:
They were over enthusiastic—
‘They’ being the doctors—
so some of the such guidelines that were in place were either ignored or fudged. To go over it again: the question was asked:
So patients welfare was sacrificed?
The answer was:
Unfortunately yes.
Tony Adams also said:
Here was a situation that should have been corrected earlier than it was and people concerned both in Government and in the Committees who were handing out the hormones were derelict in their duty in not stopping it sooner.
snip...
It is a fact the pituitary glands were not donated, so no record of the cadavers was ever kept. Ergo there is no way anyone can now go back and find out where the CJD originated. This is reprehensible. In our society grave robbing is illegal, is it not? For what they did was, indeed, grave robbing. When you take something from a dead body that you have not received permission for from the next of kin, and then proceed to exchange money for said body part, what else can it be called? When you harvest a portion of the brain from a patient who resides in a mental institution, when you fail to tell the recipients that the procedure is experimental and falsely state that the glands were donated and assure them of the product’s safety, as well as fail to inform of other safer procedures, isn’t that the grossest of neglect?
My safety and the safety of all the other victims in this case were never adequately protected at any time. The definition of ‘victim’ is a person who is harmed by or made to suffer from an act, circumstance, agency or condition. What is a person who is tricked, swindled or taken advantage of? A dupe. That is what I and all of my fellow victims are—dupes. We trusted and believed what we were told by those whom it is ingrained in us from childhood to trust—our doctors.
snip.
Mr Glen—Both of those are very good questions. If I may deal with the second one first, the situation—put very briefly—regarding the UK trial, which I was at myself so I am able to expand on that, was that the Hon. Mr Justice Morland ruled that the Department of Health in Britain was not negligent in relation to the deaths of those who had died from CJD before 1 July 1977 upon the basis that the state of knowledge prior to that date did not amount to negligence. For all those who were treated after that date, the government was liable, and for those families who had lost loved ones to CJD as a result of human growth hormone—one must remember that there is no HPG outside Australia— the government was liable. We are not talking about psychiatric injury; we are talking about deaths. Our clients were advised of that by way of letter when we arrived back from the UK. I have got the letter here. On 14 June 1996 we wrote a detailed letter to our clients. It opens with these words, ‘We now report to you on our trip to the UK and the USA,’ and it was a three-page letter. We did not know the result of the decision then, of course, because the judge had reserved his decision. Senator, does that answer the second part of your question?
Senator LIGHTFOOT—If you are saying that, yes, your clients were notified. Mr Glen—Yes, we did notify them then. After the decision had been announced— I think it was in August 1996—we notified them of the decision. Senator LIGHTFOOT—Shortly after the decision had been brought down? Mr Glen—That is right. We understand that parts of that judgment of the Hon. Mr Justice Morland are now under appeal by the plaintiff and the defendants. The first part of your question is also a good question because we believe the strongest part of our case against the government was on the issue of negligence in the running of the program as per the Allars report—that they owed our clients a duty of care and that there was a subsequent breach of that duty. The most difficult part of our claim was establishing psychiatric injury as a result of the government’s negligence. That, as I have indicated before, involved novel questions. Senator LIGHTFOOT—Have you advised your clients to accept damages for psychiatric injury? Mr Glen—Have we advised our clients? Senator LIGHTFOOT—Yes. Mr Glen—Our clients have been offered nothing for psychiatric injury. Senator LIGHTFOOT—But that was not my question.
snip...see full text 76 pages ;
http://www.aph.gov.au/hansard/senate/commttee/s9975723.pdf
CJD (Human Growth Hormone) Between 1959 and May 1985, 1800 children were treated under the National Human Growth Hormone Hgh) programme. There is a risk of CJD associated with some of the treatment.
---------------------------------------------------------------------------- ----
Case study: Background Some 1,800 children were treated under the National Human Growth Hormone (Hgh) programme. This ran from 1959 until May 1985 when Hgh was banned following the death of a recipient in England and two deaths in America from Creutzfeldt Jakob Disease (CJD).
The programme was initially under the control of the Medical Research Council, but from 1977 onwards was run by the Department of Health. It set out to restore growth patterns in children who would not otherwise have reached normal stature.
After the first death here, the programme was immediately stopped following consultation among the clinicians involved, and Hgh was replaced by a synthetic version. The human based product had been prepared from pituitary glands recovered from cadavers - pituitaries were routinely collected at post-mortem examination in mortuaries and it is estimated that over 960,000 pituitaries were harvested to make Hgh and/or other pituitary derived hormone treatments.
In 1992 the news generally broke that there was a risk of CJD associated with Hgh treatment, as the number of deaths rose. Sadly, we are now aware of at least 42 deaths from CJD in this group.
---------------------------------------------------------------------------- ----
Action As the numbers of CJD deaths began to rise, IM was first instructed to investigate matters in the early 1990s. We helped campaign with the families for a public inquiry but this was never granted, and as a last resort to try and find out what had happened and why, IM launched the Creutzfeldt Jakob Disease litigation in 1993.
This was divided into two groups - Group A on behalf of the victims of CJD and their families, and Group B for psychiatric injury claims for the 'worried well', who can only be told they have received potentially contaminated Hgh which may lead to this invariably fatal, dreadful neurological condition, for which there is still no test and no cure.
IM was one of the two firms on the Legal Aid Steering Committee running the litigation, and this was the first Legal Aid contract granted for a group action. This was also the first action brought in relation to any Hgh programmes anywhere in the world and the first successful pharmaceutical group action ever fought in the UK.
---------------------------------------------------------------------------- ----
Result Following the generic trial in 1996, Mr Justice Morland held that the Department of Health had been negligent for failing to suspend the Hgh programme as from July 1977.
Initially, the Judge's finding only covered new entrants on to the programme. IM successfully argued before the Court of Appeal in 1997 that the Judge should also be asked to consider those already receiving Hgh. The Judge subsequently accepted evidence from various clinicians, who confirmed they would also have suspended treatment for those already involved. This finding meant we were able to obtain compensation for the vast majority of families of those who had died, where either all or the majority of treatment had taken place after 1st July 1977.
The Department of Health agreed they would compensate any after-occurring cases of CJD which fell within the terms of the Judgment, and IM continue to be involved with most of those who develop this awful disease.
We also won the right to put forward claims for psychiatric injury for Group B, and the trial of six lead cases came before the Court in 1998. Subject to the proof of a frank psychiatric reaction to the awareness of the risk of CJD, these cases were also successful for those treated after 1st July 1977 with potentially contaminated Hgh. (A number of different preparation methods were used during the programme; more modern preparations were used from around mid-1982 and do not seem to be implicated in the crisis).
In what was the first case of its kind, Mr Justice Morland ruled the Claimants had suffered psychiatric injury as a result of being told they may develop CJD, and that their fears were rational. This success paved the way for a further 40 people to pursue psychiatric claims within the litigation, as well as numerous 'afteroccurring' claims.
All the lead psychiatric cases were successful and provided a range of cases for the Court. The Claimants were awarded between £3,500 and £300,000, including, in one case, the largest Smith v Manchester award (for disadvantage on the labour market) made at that time.
CJD has a long incubation period; new cases of CJD are regularly reported. Provisions have been made within the Queen's Bench Division of the High Court to accommodate claims for the foreseeable future.
For more information call 0870 1500 100 or drop us a line
http://www.irwinmitchell.com/RecentWork/CJDlitigation.htm
BMJ 1996;312:1057 (27 April)
News Trial begins into victims of CJD growth hormone The families of eight young people who died from Creutzfeldt-Jakob Disease (CJD) after being injected with human growth hormone as children began a test case against the Department of Health and the Medical Research Council in the High Court in London last week. The eight victims were among 17 people aged between 20 and 34 who developed the disease after treatment with human growth hormone between 1959 and 1985. Sixteen have died and the seventeenth is dying.
http://www.bmj.com/cgi/content/full/312/7038/1057
Creutzfeldt-Jakob Disease, CJD Support Group for short statured children of the 1970's and 1980's. Recommendations for Unapproved/Unregistered recipiants
http://mc2.vicnet.net.au/home/shortboys/web/cjdaustralia.html
Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob disease in the United States
http://cjdusa.blogspot.com/
BSE (Mad Cow) Update: Do Reports of sCJD Clusters Matter?
snip... see full text ;
http://cjdtexas.blogspot.com/
CJD QUESTIONNAIRE
http://cjdquestionnaire.blogspot.com/
CJD, they eye's have it and they could be stealing them from your loved one
http://www.mad-cow.org/dec99_news.html#bbb
Subject: RE-The Eyes Have It (cjd) and they could be stealing them from your loved one... "pay back time" Date: Sat, 16 Sep 2000 10:04:26 -0700 From: "Terry S. Singeltary Sr." Reply-To: Bovine Spongiform Encephalopathy To: BSE-L@uni-karlsruhe.de
######### Bovine Spongiform Encephalopathy #########
Greetings List Members,
I hate to keep kicking a madcow, but this still is very disturbing to me. Not only for the recipient of the cornea's, but as well, for the people whom would be operated on, using the same tools that were used to put those stolen cornea's in the recipient with. No history of this donor or his family (re-ffi), or anything would be known, using stolen organs and or tissue's. I just think this is not only wrong, but very dangerous to a great many other people, as this is one of the most infectious tissues of TSE's. It seems that this practice of stealing organ/tissue happens more than we think. Anyway, the family of the victim which had their cornea's stolen, are now suing. In the example I used with my Mother, if 3 months before, she would have been in a catastrophic accident (car wreck, whatever), no autopsy (for whatever reason), no family (for whatever reason), she lay in the morgue, and after 4 hours, they come steal the cornea's, lot of people could have been infected, just because of lack of medical history of donor/family. It may be hypothetical, but very real. We need to stop the spread of this disease.
kind regards, Terry S. Singeltary Sr., Bacliff, Texas USA ===========================================
Previous story--
Cadaver corneal transplants -- without family permission...
http://www.mad-cow.org/~tom/dec99_news.html#bbb
===============================================
Sept. 15, 2000, 11:39PM
Slain woman's family sues over missing eyes
By BILL MURPHY Copyright 2000 Houston Chronicle
The family of a woman who was stabbed to death last year has filed a lawsuit accusing the Lions Eye Bank of Houston of removing the woman's eyes without permission and inserting plastic discs in their place.
Daisy Diaz's relatives were horrified when they saw her body and noticed her eyes were missing, said their lawyer, Duncan Neblett III.
"They're a Catholic family," Neblett said. "They have strong beliefs about the body and burial. They were really upset by this."
Dorey Zidrow, the eye bank's spokeswoman, said she could not specifically discuss the Diaz case because it was in litigation. But Zidrow said a state law allows doctors to remove corneas -- the dime-sized lens near the eye's surface -- from a corpse without the family's permission.
The eye bank's usual procedure calls for removing the corneas, Zidrow said, but not the entire eyes.
"There are an awful lot of people who benefit from this program in the state of Texas," she said.
Diaz, 25, was stabbed to death in her apartment in the 400 block of Thornton in October. Her brother-in-law, 30-year-old Raudel Quiroz, is charged in the killing but has not been caught.
Neblett said authorities have told him Quiroz may have returned to his native Guatemala.
Neither Diaz nor her family had given permission to donate any of her organs, Neblett said.
Although state law allows corneas to be removed from corpses without first gaining the family's permission, they cannot be removed over the family's stated objection.
The eye bank is located at, and staffed by, the Baylor College of Medicine, and receives part of its funding from the Lions Club.
The Diaz lawsuit is the second such suit to be filed against the eye bank in recent years.
The family of Levi Perry Jr., a Houston teacher shot to death in MacGregor Park in 1994, also alleged in their suit that Perry's eyes were removed. The family was awarded $345,000 from the eye bank in April 1999.
http://www.chron.com/cs/CDA/story.hts/metropolitan/669555
==========================================================
THE LEGALITY OF STEALING ORGAN/TISSUE...
TEXAS STATUTES
Sec. 693.012. Removal of Corneal Tissue Permitted Under Certain Circumstances.
On a request from an authorized official of an eye bank for corneal tissue, a justice of the peace or medical examiner may permit the removal of corneal tissue if:
(1) the decedent from whom the tissue is to be removed died under circumstances requiring an inquest by the justice of the peace or medical examiner;
(2) no objection by a person listed in Section 693.013 is known by the justice of the peace or medical examiner; and
(3) the removal of the corneal tissue will not interfere with the subsequent course of an investigation or autopsy or alter the decedent's postmortem facial appearance.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.012 -------------------------------------------------------- TEXAS STATUTES Sec. 693.003. Consent Required in Certain Circumstances.
(a) A medical examiner or a person acting on the authority of a medical examiner may not remove a visceral organ unless the medical examiner or person obtains the consent of a person listed in Section 693.004.
(b) If a person listed in Section 693.004 is known and available within four hours after death is pronounced, a medical examiner or a person acting on the authority of a medical examiner may not remove a nonvisceral organ or tissue unless the medical examiner or person obtains that person's consent.
(c) If a person listed in Section 693.004 cannot be identified and contacted within four hours after death is pronounced and the medical examiner determines that no reasonable likelihood exists that a person can be identified and contacted during the four-hour period, the medical examiner may permit the removal of a nonvisceral organ or tissue.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.003 -------------------------------------------------------- PLEASE NOTE; the bottom would only pertain to those who know of the law. if you don't know about it, you cannot dispute, so in four hours, they can legally remove body organs, as long as they don't disfigure. and who is to know the difference? makes me wonder of some of my dead relatives, and if they were burried with their eye's and or any of their organs. This is very disturbing, if not for moral reasons, but for the risk of dangerous pathogens (human TSE's, etc.) to be transmitted. only time will tell, but i am very disturbed. these laws are not morally correct. They should be re-written as to they cannot so easily take your organs, with no one knowing. The Family or Victim, must consent. There should be some kind of research on donor/family medical history...TSS --------------------------------------------------------
Sec. 693.013. Persons Who May Object to Removal.
The following persons may object to the removal of corneal tissue:
(1) the decedent's spouse;
(2) the decedent's adult children, if there is no spouse;
(3) the decedent's parents, if there is no spouse or adult child; or
(4) the decedent's brothers or sisters, if there is no spouse, adult child, or parent.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.013 ------------------------------------------------------- to cover one's butt....
Sec. 693.014. Immunity From Damages in Civil Action.
(a) In a civil action brought by a person listed in Section 693.013 who did not object before the removal of corneal tissue, a medical examiner, justice of the peace, or eye bank official is not liable for damages on a theory of civil recovery based on a contention that the person's consent was required before the corneal tissue could be removed.
(b) Chapter 104, Civil Practice and Remedies Code, applies to a justice of the peace, medical examiner, and their personnel who remove, permit removal, or deny removal of corneal tissue under this subchapter as if the justice of the peace, medical examiner, and their personnel were state officers or employees.
Acts 1989, 71st Leg., ch. 678, Sec. 1, eff. Sept. 1, 1989.
Note: This information includes legislation enacted through the 75th Congress. The 76th session of the Texas Legislature has concluded. The State of Texas has not yet made the new codes available to the public. Until they do, search the bill text for any changes or amendments.
Search 1999 Legislation for: 693.014
[[[as you can see, they knew it was wrong when they wrote the laws. or they would not have covered the rear-ends so well...TSS]]] --------------------------------------------------------- thanks again, kind regards, Terry S. Singeltary Sr.
############ http://mailhost.rz.uni-karlsruhe.de/warc/bse-l.html ############
----- Original Message ----- From: Terry S. Singeltary Sr. To: jgoodman@cber.fda.gov Sent: Friday, September 01, 2006 2:49 PM Subject: RE- FDA FORMS TASK FORCE ON HUMAN TISSUE SAFETY
http://www.microbes.info/forums/index.php?showtopic=375
JOHN CORNYN
TEXAS
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
April 26,2005
Mr. Terry Singeltary P.O. Box 42 Bacliff, Texas 77518
Dear Mr. Singeltary:
In response to your recent request for my assistance, I have contacted the National Institutes ofHealth. I will write you again as soon as I receive a reply.
I appreciate having the opportunity to represent you in the United States Senate and to be of service in this matter.
Sincerely,
JOHN CORNYN United States Senator JC:djl
===============
JOHN CORNYN
TEXAS
UNITED STATES SENATE
WASHINGTON, DC 20510-4305
May 18,2005
Mr. Terry Singeltary P.O. Box 42 Bacliff, Texas 77518
Dear Mr. Singeltary:
Enclosed is the reply I received from the Department of Health and Human Services in response to my earlier inquiry on your behalf. I hope this will be useful to you. I appreciate having the opportunity to represent you in the United States Senate.
Thank you for taking time to contact me.
Sincerely,
JOHN CORNYN United States Senate JC:djl Enclosure
DEPARTMENT OF HEALTH & HUMAN SERVICES
National Institutes of HealthNational Institute of NeurologicalDisorders and Stroke NINDS Building 31, Room 8A52 31 Center Dr., MSC 2540 Bethesda, Maryland 20892-2540 Phone: 301-496-9746 Fax: 301-496-0296 Email: [log in to unmask]
May 10, 2005
The Honorable John Cornyn United States Senator Occidental Tower5005 LBJ Freeway, Suite 1150 Dallas, Texas 75244-6199
Dear Senator Cornyn:
Your letter to the National Institutes of Health (NIH) forwarding correspondence from Mr. Terry S. Singeltary, Sr., has been forwarded to me for reply. Mr. Singeltary is concerned about thepreservation of Creutzfeldt-Jakob disease (CJD) brain samples that have been maintained by theNational Institute of Neurological Disorders and Stroke (NINDS) Intramural Research programfor many years.
I am sorry to learn that Mr. Singeltary's mother died of CJD and can certainly understand hisdesire that any tissues that could help investigators unravel the puzzle of this deadly disease arepreserved. I hope he will be pleased to learn that all the brains and other tissues with potential tohelp scientists learn about CJD are, and will continue to be, conserved. (The tissues that arediscarded are those that have either decayed to an extent that renders them no longer appropriatefor research or those for which we do not have sufficient identification.)
The purpose of gathering these brains and tissues is to help scientists learn about CJD. To that end, some of the NINDS-held samples are distributed to investigators who can demonstrate thatthey have a compelling research or public health need for such materials. For example, sampleshave been transferred to NIH grantee Dr. Pierluigi Gambetti, who heads the National PrionDiseases Pathology Surveillance Center at Case Western Reserve University in Ohio and workswith the Centers for Disease Control and Prevention to monitor all cases of CJD in the UnitedStates. Dr. Gambetti studies the tissues to learn about the formation, physical and chemicalproperties, and pathogenic mechanisms of prion proteins, which are believed to be involved inthe cause of CJD. Samples have also been transferred to Dr. David Asher, at the U.S. Food andDrug Administration, for use in assessing a potential diagnostic test for CJD.
Page 2 - The Honorable John Cornyn
in closing, we know that donating organs and tissue from loved ones is a very difficult andpersonal choice that must often be made at the most stressful of times. We at the NINDS aregrateful to those stalwart family members who make this choice in the selfless hope that it willhelp others afflicted with CJD. We also know the invaluable contribution such donations maketo the advancement of medical science, and we are dedicated to the preservation of all of thetissue samples that can help in our efforts to overcome CJD.
I hope this information is helpful to you in responding to Mr. Singeltary. Sincerely,
Story C. Landis, Ph.D. Director, National Institute ofNeurological Disorders and Stroke
==================================
NIH says it will preserve CJD brains By STEVE MITCHELL
WASHINGTON, May 31 (UPI) -- The National Institutes of Health apparently has reversed its position on the fate of an invaluable collection of brains from people afflicted with a condition similar to mad cow disease, saying in a letter to a U.S. senator it will not destroy the collection.
An NIH official had told United Press International previously that the brain collection, which consists of samples from hundreds of people who died from the brain-wasting illness called Creutzfeldt Jakob disease, could be discarded if another entity does not claim them.
That sparked an outcry from patient-advocacy groups, consumer watchdogs and scientists, and the agency now appears to have backed away from that course.
"All the brains and other tissues with potential to help scientists learn about CJD are, and will continue to be, conserved," Story Landis, director of the National Institute of Neurological Disorders and Stroke, which oversees the brain collection, wrote in a May 10 letter to Sen. John Cornyn, R-Texas.
Cornyn had inquired about the status of the collection in April.
Last March, Eugene Major, acting director of the basic neuroscience program at the NIH, told UPI the useful portions of the collection had been doled out to scientists and the remaining samples had "very little remaining value" and could be destroyed.
Landis could not be reached for comment Tuesday. NINDS spokesman Paul Girolami told UPI he had been unable to locate her.
Scientists think the collection, which dates back to 1963, is invaluable for research on CJD and similar diseases and could even provide insight into treatments. There is no cure for CJD and patients typically die within a year after symptoms begin.
"Absolutely, the collection is worth keeping," Bruce Johnson, a former NIH scientist who said he had been told the collection would be destroyed in two years if no one took the samples from the agency, told UPI.
The Memorial Institute for Neurodegenerative Diseases Inc., a non-profit organization consisting of more than 40 researchers from several countries, offered to take the collection off of NIH's hands more than a year ago and so far has not heard anything from the agency, Harry Peery, MIND's executive director, told UPI.
CJD belongs to a group of incurable and fatal 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.
Variant CJD, or vCJD, is a relatively new TSE, which people can contract from consuming beef products infected with the mad cow pathogen.
Despite Landis' assurance the collection will be preserved, some family members of the patients who donated their brains to the NIH are still skeptical. This is because the wording Landis used in the letter leaves open the possibility that some brain samples are being destroyed.
"The tissues that are discarded are those that have either decayed to an extent that renders them no longer appropriate for research or those for which we do not have sufficient identification," Landis wrote.
"Which ones" are being destroyed? asked Terry Singeltary, who is involved with several CJD patient groups.
"With a system like this, they could destroy whatever and whenever they wanted, for whatever reason they wanted," Singeltary, whose mother died of CJD in 1997, told UPI.
"It's a perfect excuse to discard some suspicious tissue resembling vCJD or some atypical TSE related to animal TSEs in the USA," he added.
Although the collection includes samples from CJD patients as young as 16 that could make them candidates for possible vCJD, the brains have never been screened for evidence of the disease. The only confirmed vCJD case in the United States occurred in a Florida woman who is thought to have contracted the disease in England.
Johnson said he along with renowned CJD expert Paul Brown were in the process of sorting through the samples to match them up with patient identification documents until they both retired. Some of the samples may prove impossible to identify, he said, but he and Brown are the only ones familiar enough with the collection to organize it and neither has been asked back by the agency to aid in the identification process.
Steve Mitchell is UPI's Medical Correspondent. E-mail: [log in to unmask]
Copyright 2005 by United Press International. All Rights Reserved.
http://washingtontimes.com/
http://www.sciencedaily.com/
Wednesday, January 02, 2008
Risk factors for sporadic Creutzfeldt-Jakob disease
http://creutzfeldt-jakob-disease.blogspot.com/2008/01/risk-factors-for-sporadic-creutzfeldt.html
(Not to forget about the potential for some BSE cases to come from vaccinations containing pituitary-derived SRMs.)
TWA LITTLE minute
http://www.bseinquiry.gov.uk/files/yb/1988/06/10001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/13010001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/14006001.pdf
COMMERCIAL IN CONFIDENCE
http://www.bseinquiry.gov.uk/files/yb/1988/09/06005001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/10/06005001.pdf
NOT FOR PUBLICATION
http://www.bseinquiry.gov.uk/files/yb/1988/11/01012001.pdf
http://www.bseinquiry.gov.uk/yb/1988/11/04003001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/04/00007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/07/00007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/09/00004001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/10/00003001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/04001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/26007001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/01/30001001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/09/06011001.pdf
NON-LICENSED HUMAN TISSUE DEVICES WERE NOT COMMERCIALLY AVAILABLE
snip...
I was quite prepared to believe in unofficial pituitary hormones, also in the 1970's, whether as described by Dr. Little, or in other circumstances, for animal use.
snip...
The fact that there were jars of pituitaries (or extract) around on shelves is attested by the still potent 1943 pituitaries, described in Stockell Hartree et al. (J/RF/17/291) which had come from the lab. at Mill Hill. Having taken the trouble to collect them, they were not lightly thrown out...
http://www.bseinquiry.gov.uk/files/ws/s467bx.pdf
more on the 1968 medicine act, they forgot to follow
http://www.bseinquiry.gov.uk/files/yb/1989/01/30008001.pdf
Draft cover letter to product licence holders (considered by Human and Vet Medicines including deer)
http://www.bseinquiry.gov.uk/files/yb/1989/02/22008001.pdf
http://www.bseinquiry.gov.uk/files/yb/1989/02/22011001.pdf
(It was noted with concern that hormone extracts could be manufactured by a veterinary surgeon for administration to animals under his care without any Medicines Act Control.)
http://www.bseinquiry.gov.uk/files/yb/1988/06/08011001.pdf
http://www.bseinquiry.gov.uk/files/yb/1988/06/07010001.pdf
TWA LITTLE STATEMENT 331
http://www.bseinquiry.gov.uk/files/ws/s331.pdf
TSS
posted by Terry S. Singeltary Sr. at
10:48 AM
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