Views & Reviews
Confidentiality in preclinical Alzheimer disease studies
When research and medical records meet
Jalayne J. Arias, JD and Jason Karlawish, MD + Show Affiliations | + Show
Full Disclosures Correspondence to Dr. Karlawish: Jason.karlawish@uphs.upenn.edu
Published online before print January 29, 2014, doi:
10.1212/WNL.0000000000000153 Neurology 10.1212/WNL.0000000000000153
Abstract Full Text (PDF)
Abstract
Clinical trials to advance the diagnosis and treatment of Alzheimer disease
(AD) may expose research subjects to discrimination risks. An individual
enrolled in a research study that uses positive test results from amyloid PET
imaging or CSF measures of β-amyloid 42 as inclusion criteria has biomarkers
indicative of AD pathology. If insurers and employers learn this information, it
could expose subjects to discrimination. Unfortunately, current legal and
regulatory mechanisms are not sufficient to protect against harms that have
significant consequences for subjects. Existing law that prohibits employment
and insurance discrimination based on genetic status does not apply to amyloid
biomarkers or any other biomarkers for neurodegenerative diseases. Gaps in legal
protections fail to protect research subjects from discrimination by long-term
care and disability insurers. This risk is particularly concerning because
individuals with AD dementia ultimately need long-term care services. To
maximize subject protections and advance valuable research, policymakers,
investigators, and research institutions must address shortcomings in the design
of the electronic medical record, revise laws to limit discrimination, and
develop practices that inform research participants of risks associated with
loss of confidentiality.
Received August 27, 2013. Accepted in final form November 19, 2013. © 2014
American Academy of Neurology
Date: Thu, 6 Apr 2000 09:49:14 –0700
A VERY IMPORTANT FACTOR that must be weighed in on, HEALTH INSURANCE
COMPANIES. IF there is not a provision, clause, that stipulates that being
placed AT RISK OF CREUTZFELDT JAKOB DISEASE, would NOT blackball you i.e. MARK
you, that NOT in any way can discriminate against you because of the disease,
that NOT in any way would jeopardize or enhance cost for health insurance for
anyone being placed 'AT RISK'.
Subject: Lord Lucas asked Her Majesty's Government about insurance
company's and CJD???
Date: Thu, 6 Apr 2000 09:49:14 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
######### Bovine Spongiform Encephalopathy #########
Greetings Everyone,
I am deeply concerned about the answer given to Lord Lucas on CJD and
insurance company's. In Her Majesty's reply, the reason given for insurance
company's _not_ being able to require candidates for life insurance to be tested
for incipient nvCJD or any human TSE, was because there is no test to date, that
would allow them to test. My question to Her Majesty's Court would have been;
when such a test is available, will the insurance company's be allowed to test
for human TSE's? It seems Lord Lucas question was not answered fully, it seems
Her Majesty's Court just went around the question. If in fact, the insurance
company's are allowed to do this, once again the people would have been deceived
by their government, for the sake of money, greed, and corporate industry$$$
This would be devastating to the people, not only have they been murdered by
corporate greed, but they then would be sold out, for corporate greed. It's a
no-win situation for public consumers...
kind regards,
Terry S. Singeltary Sr., Bacliff, Texas USA
April 4, 2000
Lord Lucas asked Her Majesty's Government: Whether they will permit
insurance companies to require that candidates for life insurance be tested for
incipient new-variant CJD.[HL1661] Lord Hunt of Kings Heath: Insurance companies
would be unable to introduce such a step, as no acceptable test currently exists
for the demonstration of infection before the onset of clinical symptoms.
Subject: Re: re-Lord Lucas U.K. Government sells out CJD victims (and
others)'again' / U.K. Government O.K.'s Genetic testing for Insurers, looking
for hereditary illnesses
Date: Fri, 13 Oct 2000 09:37:22 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
References: 1
######### Bovine Spongiform Encephalopathy #########
first Huntington's, then CJD, then another, and so on. what needs to take
place, is everyone drop their insurance. once you give these people an opening,
it's like a hole in a dam, there is no closing it, and it just gets bigger and
bigger. This is a serious breach of human ethics, all for the almighty dollar$$$
kind regards, Terry
DEPARTMENT OF HEALTH 2000/0580 Friday 13th October 2000 COMMITTEE ANNOUNCES
DECISION ON USE OF GENETIC TEST RESULTS FOR HUNTINGTON'S DISEASE BY
INSURERS
Subject: Lord Lucas asked Her Majesty's Government about insurance
company's and CJD???
Date: Thu, 6 Apr 2000 09:49:14 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
######### Bovine Spongiform Encephalopathy #########
Greetings Everyone, I am deeply concerned about the answer given to Lord
Lucas on CJD and insurance company's. In Her Majesty's reply, the reason given
for insurance company's _not_ being able to require candidates for life
insurance to be tested for incipient nvCJD or any human TSE, was because there
is no test to date, that would allow them to test. My question to Her Majesty's
Court would have been; when such a test is available, will the insurance
company's be allowed to test for human TSE's? It seems Lord Lucas question was
not answered fully, it seems Her Majesty's Court just went around the question.
If in fact, the insurance company's are allowed to do this, once again the
people would have been deceived by their government, for the sake of money,
greed, and corporate industry$$$ This would be devastating to the people, not
only have they been murdered by corporate greed, but they then would be sold
out, for corporate greed. It's a no-win situation for public consumers...
kind regards, Terry S. Singeltary Sr., Bacliff, Texas USA
April 4, 2000 Lord Lucas asked Her Majesty's Government: Whether they will
permit insurance companies to require that candidates for life insurance be
tested for incipient new-variant CJD.[HL1661] Lord Hunt of Kings Heath:
Insurance companies would be unable to introduce such a step, as no acceptable
test currently exists for the demonstration of infection before the onset of
clinical symptoms.
Subject: Re: re-Lord Lucas U.K. Government sells out CJD victims (and
others)'again' / U.K. Government O.K.'s Genetic testing for Insurers, looking
for hereditary illnesses
Date: Fri, 13 Oct 2000 09:37:22 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
References: 1 ######### Bovine Spongiform Encephalopathy ######### first
Huntington's, then CJD, then another, and so on.
what needs to take place, is everyone drop their insurance. once you give
these people an opening, it's like a hole in a dam, there is no closing it, and
it just gets bigger and bigger. This is a serious breach of human ethics, all
for the almighty dollar$$$
kind regards,
Terry
DEPARTMENT OF HEALTH 2000/0580 Friday 13th October 2000 COMMITTEE ANNOUNCES
DECISION ON USE OF GENETIC TEST RESULTS FOR HUNTINGTON'S DISEASE BY INSURERS
The Genetics and Insurance Committee (GAIC) has today announced that the
reliability and relevance of the genetic test for Huntington's Disease is
sufficient for insurance companies to use the result when assessing applications
for life insurance. Professor John Durant, Chairman of GAIC said: "Genetic test
results are already used in certain circumstances by insurers and the Committee
was asked to look at the reliability and accuracy of the genetic test for
Huntington's Disease. We have considered carefully the application received from
the Association of British Insurers for approval of the use of these tests. The
evidence presented demonstrates that the two tests for the Huntington's gene are
reliable and that an abnormal result is associated with significant clinical
effects and with an increased probability of a claim on a life insurance policy.
This decision will mean that those with a negative test result will not be asked
to pay more for life insurance because of their family history of HuntingtonÆs
disease. "This decision does not mean that individuals will be asked to have a
genetic test for Huntington's Disease before obtaining insurance but, where
individuals have already been tested as part of their medical care, then there
is nothing to prevent insurance companies asking for that information. "Many who
have a family history of a genetic disorder such as Huntington's Disease have
difficulty in obtaining insurance because of their family history. The approval
of the two tests for Huntington's Disease will allow insurance to be provided at
normal rates to those who have a normal test result." A significant amount of
data has been collected concerning the effects of Huntington's Disease on life
expectancy and on mortality risk as part of the process of reviewing this
application. The Committee hopes that the insurance industry will use this
information to look at the problems of those who have an abnormal genetic test
result and of those who have chosen not to have a genetic test (who have a 50 %
chance of carrying the abnormal gene if they have an affected parent). The GAIC
was asked to examine the actuarial evidence for using individual genetic tests.
The insurance industry, through the main trade body the Association of British
Insurers, has agreed to abide by GAIC decisions. If GAIC decides that the
evidence on the reliability and relevance of a particular test is insufficient
to justify its use, the Association have agreed to stop using them and
retrospectively reassess affected individual insurance premiums. The broader
social and ethical issues surrounding the use of genetic tests in insurance and
employment have been referred to the new Human Genetics Commission. An
application for approval of two genetic tests for Huntington's Disease was
submitted to GAIC by the Association of British Insurers (ABI) in July 2000. The
application was sent to a clinical geneticist and an independent actuary for
expert review and also to support groups for Huntington's Disease and to the
Genetic Interest Group (GIG) for their comments. At their meeting on 28
September, GAIC considered the application, in the presence of observers from
the ABI, GIG and Huntington's Disease Association. Their decision is announced
today. The committee recognises that this complex subject is an important issue
to the public, industry and government alike. GAIC will work closely with the
new Human Genetics Commission when they begin their inquiry into the use of
genetic data including in insurance and employment later this year. Notes to
Editors: A summary of the decision and further details about GAIC and the
application process are available on the Department of Health web site at
www.doh.gov.uk/genetics/gaic.htm The establishment of the Genetics and Insurance
Committee (GAIC) on 12 April 1999 fulfilled the Government's commitment to
establish an independent review body, to evaluate the scientific and actuarial
evidence presented in support of the use of specific genetic tests for insurance
products. This was made in response to the Human Genetics Advisory Commission
(HGAC) report on the Implications of Genetic Testing for the Insurance Industry,
issued in December 1998. GAIC is a non-statutory Advisory Committee and has a
UK-wide remit. Its terms of reference are: - to develop and publish criteria for
the evaluation of specific genetic tests, their application to particular
conditions and their reliability and relevance to particular types of insurance;
- to evaluate particular tests against those criteria and promulgate its
findings; - to report to Health, Treasury and Department of Trade and Industry
Ministers on proposals received by GAIC from insurance providers and the
subsequent level of compliance by the industry with the recommendations of GAIC.
The core membership of GAIC is: Professor John Durant, Chief Executive of
At-Bristol as Chairman, appointed from amongst the members of Advisory Committee
on Genetic Testing; Professor Sandy Raeburn, a geneticist nominated by the
Association of British Insurers (ABI); Professor Dian Donnai a geneticist
nominated by CMO (England); Dr David Muiry, an Actuary nominated by the Faculty
and Institute of Actuaries; Mr Anthony OÆLeary, an Insurance Practitioner
nominated by the ABI; Mrs Susan Watkin and Mrs Barbara Carmichael, members of
Patient Support Organisations nominated by the Genetic Interest Group; Professor
Tim Bishop, an academic with a background in epidemiology and genetics nominated
by the Director of Research, Department of Health. GAIC has published evaluation
criteria covering the details of the genetic condition being tested for, the
accuracy and reliability of the tests used to detect it and the relevance of the
test results to decisions about insurance underwriting. GAIC expects that
applications will be for genetic conditions caused by changes in a single gene,
that are very likely to lead to serious ill health or disability and that are
therefore most relevant to the setting of premiums for life and health
insurance. Over the next few months, GAIC will consider applications relating to
the conditions currently covered by the Association for British Insurers' Code
of Practice on Genetic Testing. These include Huntington's Disease, myotonic
dystrophy, the early-onset form of Alzheimer's disease and rare inherited
cancers. The intention is to complete review these applications by June 2001.
The Human Genetics Commission, chaired by Baroness Helena Kennedy, was created
in 1999 to provide the Government with strategic advice on the wider
implications of human genetics. It replaces three former committees and is
responsible for making links between all the other relevant bodies in the
advisory and regulatory framework. Further information can be found at
www.hgc.gov.uk HGC has been formulating a public consultation exercise on the
storage, protection and use of personal genetic information which will include
the use of genetic data for insurance purposes. The issues are due to be
discussed at a public consultative meeting at the Centre for Life,
Newcastle-upon-Tyne in November 2000.
"Terry S. Singeltary Sr." wrote:
>
> ######### Bovine Spongiform Encephalopathy #########
>
> Greetings List,
>
> Talk about something that really stinks, this does. First
> the U.K. Government allows the Industry's involved to continue
> to murder (God only knows how many). Then they don't support
them,
> and to top it off, they then allow the only hope one has to
> get any kind of medical care, they allow the insurers to bail
> out on victims of this man-made blunder. I thought Lord Lucas
> asked this question to Her Majesty's Court, and Her Majesty's
> Court said;
>
> ######### Bovine Spongiform Encephalopathy
> #########
>
> They replied that as there was no test they could not test, so
the
> question did not arise!
>
> Ralph
>
> > Did I miss something or have they not yet responded to this
one?
> >
> > Question 20: Whether they will permit insurance companies to
require > that
> > customers be tested for incipient nvCJD.
>
> Dear Lord Lucas,
>
> the question has arised again, and should be confronted.
> may i suggest that you ask this question again. it would seem,
> with a test so close to come about for the testing of TSE's,
> one would think, they are just preparing for the worse, and
> covering their butts, at the same time.
>
> Politics as usual, but my God, have not these people suffered
> enough, without the Governments completely stripping them
> from any help at all. Hell, you should just take them out back
> and shoot them........
>
> kind regards,
> Terry S. Singeltary Sr., Bacliff, Texas USA
> ===========================================
>
> Thursday, 12 October, 2000, 11:28 GMT 12:28
> UK Genetic test first for UK
>
> Genetic tests can predict future illness
> Insurers in the UK are to be allowed to use
> genetic test results to identify people with
> hereditary illnesses.
>
> The government will announce on Friday that
> insurers will be able to use those results to
> refuse cover or to push up premiums for those
> born with genes that could lead to fatal
> conditions.
>
> The decision makes Britain the first country to
> approve the commercial use of gene
> technology in this way.
>
> The Genetics and
> Insurance Committee,
> an advisory body
> reporting to the
> Department of Health,
> has decided that a test
> used to identify a
> hereditary risk of
> contracting the disease
> Huntington's chorea is
> technically reliable.
>
> Tests covering several other conditions,
> including hereditary breast cancer and
> Alzheimer's disease, are also awaiting approval.
>
> Two years ago another advisory body, the
> Human Genetics Advisory Commission,
> recommended a moratorium on the use of
> information from such tests.
>
> However, that advice was rejected by the
> government, which decided insurers should be
> able to use such information, subject to the
> Genetics and Insurance Committee agreeing a
> test's technical reliability.
>
> The announcement is likely to fuel the ethical
> debate over the use of genetic information.
>
> Critics fear that vulnerable groups could find it
> difficult to get a mortgage or life insurance, or
> face higher premiums.
>
> But the insurance industry dismissed that
> suggestion.
>
> No compulsion
>
> Professor John Durant, chairman of the
> Genetics and Insurance Committee, told the
> BBC that nobody would be asked to take a
> genetic test by an insurance company.
>
> Rather they would be
> expected to disclose
> the results of any
> genetic test for
> Huntington's disease
> they had taken in the
> past.
>
> Professor Durant said
> this would not be a
> legal obligation, but
> insurance companies
> would have the right to
> refuse to offer
> insurance if a customer
> refused to reveal details.
>
> He said: "It is not a punitive step. This will
> actually benefit very many people seeking
> insurance.
>
> "The only people who are likely to have taken
> a test for Huntington's disease are people with
> a family history of this disease.
>
> "Many of those people will actually have had
> results which show that they are fortunate
> enough not to have inherited the gene, so
> those people will be able to get insurance, at
> the moment they may well find it difficult."
>
> Mary Francis, the Director-General of the
> Association of British Insurers, said that
> companies already asked potential customers
> about family history of disease.
>
> She said: "This is really an extension of what
> already does happen."
>
> Sue Watkin, chair of
> the Huntington's
> Disease Association,
> also said insurance
> companies were already
> using genetic test
> results to calculate or
> refuse premiums.
>
> She said: "Our main concern is that people at
> risk of late onset genetic disorders should be
> able to get insurance of some kind up to a
> certain level.
>
> "At present, many people are made offers they
> just cannot afford."
>
> Ms Watkin said that a person at 50% risk of
> developing Huntington's often found their
> insurance premium loaded by as much as
> 300%.
>
> She called on the government to establish a
> fund to be used to provide insurance for
> people at risk.
>
> The National Consumers' Council is concerned
> people will be put off having tests because
> they feared that the results might count
> against them - with a possible knock-on effect
> on their health.
>
> A spokeswoman said: "A person might think if I
> take a test I will know information that I don't
> know now, and maybe ignorance is bliss.
>
> "If you don't know the information you can't
> put it on the form."
>
> The Human Genetics Commission, another
> government advisory body overseeing
> developments in the use of genetic
> technology, said that it would launch shortly a
> major public consultation exercise about the
> use and protection of genetic information,
> which would include insurance issues.
>
> The exercise would eventually result in the
> Commission making recommendations to
> ministers.
>
>
Subject: Re: CJD $ BLOOD $ Schmerr test$$$
Date: Wed, 18 Oct 2000 11:01:01 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
References: 1 ######### Bovine Spongiform Encephalopathy #########
Greetings again List Members,
it just hit me about the blood testing. bought knocked me out of the
chair. could it be, the reason they have stalled the blood testing, they are
waiting for the genetic testing to be perfected for the insurance company's.
once perfected and implemented, and no risk of any type medical insurance
coverage for TSE patients, then they will be allowed to go ahead with the blood
tests for human TSE's. pretty smart huh, they don't pay all these Gov. Officials
just to cram BSE tainted hamburgers down the throat of their daughters, or just
for nothing. They pay a good portion of them to think up schemes, to get them
out of man-made environmental death sentences. I would love to know, who thought
up the scheme, to brain-wash everyone into believing the 'CHOSEN ONES' are the
only ones tied to this man-made death sentence? Probably the same one to think
up the genetic testing for insurance companies. Oh, well, this pretty much does
it for me today. Probably already over-loaded myself today. Now i know why Mr.
Schmitt only allows 4 messages.
kind regards,
Terry S. Singeltary Sr., Bacliff, Texas USA
Department of Health Statement - Genetic Testing and Insurance
kind regards, Terry S. Singeltary Sr., Bacliff, Texas USA "Terry S.
Singeltary Sr." wrote:
> > ######### Bovine Spongiform Encephalopathy ######### >
snip...
Subject: Lord Lucas asked Her Majesty's Government about insurance
company's and CJD???
Date: Thu, 6 Apr 2000 09:49:14 –0700
From: "Terry S. Singeltary Sr."
Reply-To: Bovine Spongiform Encephalopathy
To: BSE-L@uni-karlsruhe.de
######### Bovine Spongiform Encephalopathy #########
Greetings Everyone, I am deeply concerned about the answer given to Lord
Lucas on CJD and insurance company's. In Her Majesty's reply, the reason given
for insurance company's _not_ being able to require candidates for life
insurance to be tested for incipient nvCJD or any human TSE, was because there
is no test to date, that would allow them to test. My question to Her Majesty's
Court would have been; when such a test is available, will the insurance
company's be allowed to test for human TSE's? It seems Lord Lucas question was
not answered fully, it seems Her Majesty's Court just went around the question.
If in fact, the insurance company's are allowed to do this, once again the
people would have been deceived by their government, for the sake of money,
greed, and corporate industry$$$ This would be devastating to the people, not
only have they been murdered by corporate greed, but they then would be sold
out, for corporate greed. It's a no-win situation for public consumers... kind
regards,
Terry S. Singeltary Sr., Bacliff, Texas USA
April 4, 2000 Lord Lucas asked Her Majesty's Government: Whether they will
permit insurance companies to require that candidates for life insurance be
tested for incipient new-variant CJD.[HL1661] Lord Hunt of Kings Heath:
Insurance companies would be unable to introduce such a step, as no acceptable
test currently exists for the demonstration of infection before the onset of
clinical symptoms.
snip...full text ;
Tuesday, May 21, 2013
IS ALZHEIMER’S DISEASE A PRION DISEASE? the possible secondary
transmission by blood transfusion are posed
Tuesday, November 26, 2013
Transmission of multiple system atrophy prions to transgenic mice
Sunday, January 19, 2014
National Prion Disease Pathology Surveillance Center Cases Examined1 as of
January 8, 2014
Friday, January 10, 2014
*** vpspr, sgss, sffi, TSE, an iatrogenic by-product of gss, ffi, familial
type prion disease, what it ???
Published March 26, 2003
RE-Monitoring the occurrence of emerging forms of Creutzfeldt-Jakob disease
in the United States
Terry S. Singeltary, retired (medically)
I lost my mother to hvCJD (Heidenhain Variant CJD). I would like to comment
on the CDC's attempts to monitor the occurrence of emerging forms of CJD.
Asante, Collinge et al [1] have reported that BSE transmission to the
129-methionine genotype can lead to an alternate phenotype that is
indistinguishable from type 2 PrPSc, the commonest sporadic CJD. However, CJD
and all human TSEs are not reportable nationally. CJD and all human TSEs must be
made reportable in every state and internationally. I hope that the CDC does not
continue to expect us to still believe that the 85%+ of all CJD cases which are
sporadic are all spontaneous, without route/source. We have many TSEs in the USA
in both animal and man. CWD in deer/elk is spreading rapidly and CWD does
transmit to mink, ferret, cattle, and squirrel monkey by intracerebral
inoculation. With the known incubation periods in other TSEs, oral transmission
studies of CWD may take much longer. Every victim/family of CJD/TSEs should be
asked about route and source of this agent. To prolong this will only spread the
agent and needlessly expose others. In light of the findings of Asante and
Collinge et al, there should be drastic measures to safeguard the medical and
surgical arena from sporadic CJDs and all human TSEs. I only ponder how many
sporadic CJDs in the USA are type 2 PrPSc?
Published March 26, 2003
Letters
JAMA. 2001;285(6):733-734. doi: 10.1001/jama.285.6.733
Diagnosis and Reporting of Creutzfeldt-Jakob Disease
Terry S. Singeltary, Sr Bacliff, Tex
Since this article does not have an abstract, we have provided the first
150 words of the full text.
KEYWORDS: creutzfeldt-jakob disease, diagnosis. To the Editor: In their
Research Letter, Dr Gibbons and colleagues1 reported that the annual US death
rate due to Creutzfeldt-Jakob disease (CJD) has been stable since 1985. These
estimates, however, are based only on reported cases, and do not include
misdiagnosed or preclinical cases. It seems to me that misdiagnosis alone would
drastically change these figures. An unknown number of persons with a diagnosis
of Alzheimer disease in fact may have CJD, although only a small number of these
patients receive the postmortem examination necessary to make this diagnosis.
Furthermore, only a few states have made CJD reportable. Human and animal
transmissible spongiform encephalopathies should be reportable nationwide and
internationally.
References 1. Gibbons RV, Holman RC, Belay ED, Schonberger LB.
Creutzfeldt-Jakob disease in the United States: 1979-1998. JAMA.
2000;284:2322-2323.
14th ICID International Scientific Exchange Brochure -
Final Abstract Number: ISE.114
Session: International Scientific Exchange
Transmissible Spongiform encephalopathy (TSE) animal and human TSE in North
America update October 2009
T. Singeltary
Bacliff, TX, USA
Background:
An update on atypical BSE and other TSE in North America. Please remember,
the typical U.K. c-BSE, the atypical l-BSE (BASE), and h-BSE have all been
documented in North America, along with the typical scrapie's, and atypical
Nor-98 Scrapie, and to date, 2 different strains of CWD, and also TME. All these
TSE in different species have been rendered and fed to food producing animals
for humans and animals in North America (TSE in cats and dogs ?), and that the
trading of these TSEs via animals and products via the USA and Canada has been
immense over the years, decades.
Methods:
12 years independent research of available data
Results:
I propose that the current diagnostic criteria for human TSEs only enhances
and helps the spreading of human TSE from the continued belief of the UKBSEnvCJD
only theory in 2009. With all the science to date refuting it, to continue to
validate this old myth, will only spread this TSE agent through a multitude of
potential routes and sources i.e. consumption, medical i.e., surgical, blood,
dental, endoscopy, optical, nutritional supplements, cosmetics etc.
Conclusion:
I would like to submit a review of past CJD surveillance in the USA, and
the urgent need to make all human TSE in the USA a reportable disease, in every
state, of every age group, and to make this mandatory immediately without
further delay. The ramifications of not doing so will only allow this agent to
spread further in the medical, dental, surgical arena's. Restricting the
reporting of CJD and or any human TSE is NOT scientific. Iatrogenic CJD knows NO
age group, TSE knows no boundaries. I propose as with Aguzzi, Asante, Collinge,
Caughey, Deslys, Dormont, Gibbs, Gajdusek, Ironside, Manuelidis, Marsh, et al
and many more, that the world of TSE Transmissible Spongiform Encephalopathy is
far from an exact science, but there is enough proven science to date that this
myth should be put to rest once and for all, and that we move forward with a new
classification for human and animal TSE that would properly identify the
infected species, the source species, and then the route.
CJD Singeltary submission to PLOS ;
No competing interests declared.
see full text ;
Wednesday, May 16, 2012
Alzheimer’s disease and Transmissible Spongiform Encephalopathy prion
disease, Iatrogenic, what if ?
Background
Alzheimer’s disease and Transmissible Spongiform Encephalopathy disease
have both been around a long time, and was discovered in or around the same time
frame, early 1900’s. Both diseases are incurable and debilitating brain disease,
that are in the end, 100% fatal, with the incubation/clinical period of the
Alzheimer’s disease being longer (most of the time) than the TSE prion disease.
Symptoms are very similar, and pathology is very similar.
Methods
Through years of research, as a layperson, of peer review journals,
transmission studies, and observations of loved ones and friends that have died
from both Alzheimer’s and the TSE prion disease i.e. Heidenhain Variant
Creutzfelt Jakob Disease CJD.
Results
I propose that Alzheimer’s is a TSE disease of low dose, slow, and long
incubation disease, and that Alzheimer’s is Transmissible, and is a threat to
the public via the many Iatrogenic routes and sources. It was said long ago that
the only thing that disputes this, is Alzheimer’s disease transmissibility, or
the lack of. The likelihood of many victims of Alzheimer’s disease from the many
different Iatrogenic routes and modes of transmission as with the TSE prion
disease.
Conclusions
There should be a Global Congressional Science round table event set up
immediately to address these concerns from the many potential routes and sources
of the TSE prion disease, including Alzheimer’s disease, and a emergency global
doctrine put into effect to help combat the spread of Alzheimer’s disease via
the medical, surgical, dental, tissue, and blood arena’s. All human and animal
TSE prion disease, including Alzheimer’s should be made reportable in every
state, and Internationally, WITH NO age restrictions. Until a proven method of
decontamination and autoclaving is proven, and put forth in use universally, in
all hospitals and medical, surgical arena’s, or the TSE prion agent will
continue to spread. IF we wait until science and corporate politicians wait
until politics lets science _prove_ this once and for all, and set forth
regulations there from, we will all be exposed to the TSE Prion agents, if that
has not happened already.
end...tss
SEE FULL TEXT AND SOURCE REFERENCES ;
Wednesday, May 16, 2012
Alzheimer’s disease and Transmissible Spongiform Encephalopathy prion
disease, Iatrogenic, what if ?
Proposal ID: 29403
Sunday, December 15, 2013
*** FDA PART 589 -- SUBSTANCES PROHIBITED FROM USE IN ANIMAL FOOD OR FEED
VIOLATIONS OFFICIAL ACTION INDICATED OAI UPDATE DECEMBER 2013 UPDATE
Wednesday, January 01, 2014
Molecular Barriers to Zoonotic Transmission of Prions
*** chronic wasting disease, there was no absolute barrier to conversion of
the human prion protein.
*** Furthermore, the form of human PrPres produced in this in vitro assay
when seeded with CWD, resembles that found in the most common human prion
disease, namely sCJD of the MM1 subtype.
Subtype 1: (sCJDMM1 and sCJDMV1)
This subtype is observed in patients who are MM homozygous or MV
heterozygous at codon 129 of the PrP gene (PRNP) and carry PrPSc Type 1.
Clinical duration is short, 3‑4 months.32 The most common presentation in
sCJDMM1 patients is cognitive impairment leading to frank dementia, gait or limb
ataxia, myoclonic jerks and visual signs leading to cortical blindness
(Heidenhain’s syndrome)...
Animals injected with iatrogenic Creutzfeldt–Jakob disease MM1 and genetic
Creutzfeldt–Jakob disease MM1 linked to the E200K mutation showed the same
phenotypic features as those infected with sporadic Creutzfeldt–Jakob disease
MM1 prions...
*** our results raise the possibility that CJD cases classified as VV1 may
include cases caused by iatrogenic transmission of sCJD-MM1 prions or food-borne
infection by type 1 prions from animals, e.g., chronic wasting disease prions in
cervid. In fact, two CJD-VV1 patients who hunted deer or consumed venison have
been reported (40, 41). The results of the present study emphasize the need for
traceback studies and careful re-examination of the biochemical properties of
sCJD-VV1 prions. ***
snip...see full text ;
Friday, January 17, 2014
Annual report of the Scientific Network on BSE-CWD-TSE EFSA, Question No
EFSA-Q-2013-01004, approved on 11 December 2013
TECHNICAL REPORT
O.I.E. brings up the taboo word and risk i.e. CWD !
layperson
mom dod 12/14/97 confirmed Heidenhain Variant Creutzfeldt Jakob Disease
hvCJD, just made a promise to mom, never forget, and never let them forget.
...
no competing interest, no other authors, blah, blah, blah...
sincerely,
kindest regards,
Terry S. Singeltary Sr.
P.O. Box 42
Bacliff, Texas USA 77518
Thank you! Thanks so much for your letter. We intend to publish as rapidly as possible all letters that contribute substantially to the topic under discussion.
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