APRIL 2003
To: UN High Commissioner on
Human Rights
Palais Wilson, 1211, Geneva,
Switzerland
From: Kathleen M. Dickson, for
ActionLyme, International Patient
Advocacy Group. 23 Garden Street,
Pawcatuck, Connecticut, USA
06379-1508, telephone 860-235-5216
Dear Commissioner,
We patients are asking the UN High
Commissioner to please investigate the following matters. The source of
these human rights violations is the United States Government, through
their sponsorship of the following human rights abuse practices.
Attached please find a summary of the
history of the abuse of biotechnology sent to the United
States Institutes of Health and the Office of Research Integrity of the US
Department of Health and Human Services.
The diagnosis of Lyme disease was
falsely narrowed to suit the intended commercial test kits and vaccines, and
we fear that the same biotechnology abuse will reoccur.
Below are some of resultant
violations.
The 4 DOMAINS of HUMAN RIGHTS
VIOLATIONS IN PERSONS SUFFERING FROM
TICK BORNE DISEASES INFECTIONS:
VIOLATION NUMBER ONE:
"Article 2
1. Each State Party to the present
Covenant undertakes to take steps,
individually and through international
assistance and co_operation,
especially economic and technical, to
the maximum of its available
resources, with a view to achieving
progressively the full realization
of the rights recognized in the
present Covenant by all appropriate
means, including particularly the
adoption of legislative measures.
2. The States Parties to the present
Covenant undertake to guarantee
that the rights enunciated in the
present Covenant will be exercised
without discrimination of any kind as
to race, colour, sex, language,
religion, political or other opinion,
national or social origin,
property, birth or other status.***
3. Developing countries, with due
regard to human rights and their
national economy, may determine to
what extent they would guarantee the
economic rights recognized in the
present Covenant to non-nationals."
***The United States Government
continues to fund persons who make
derogatory statements about the
character of persons with the
Tick-borne
infections. >>>>>>
EVIDENCE:
MUNCHAUSENS' ACCUSATION:
"With widespread anxiety about Lyme
disease has come Munchausen syndrome and Munchausen syndrome-by-proxy in
those concerned about "chronic" Lyme disease.-- Leonard ***Sigal***, MD, in Rahn and
Evan's, 1998 book, "Lyme disease"
ACP Key Diseases series, Page 149.
DISCRIMINATION against female
patients:
"Telling women and girls inaccurately
that they have Lyme disease "condemns patients to long-term,
untreated debility and useless, toxic and expensive courses of antibiotics,"
Sigal wrote in an editorial in the May 15 issue of the journal
Hospital
Practice."--Emerging
diseases // Ticks carry multitude of
threats //
( Minneapolis Star Tribune ) Gordon
Slovut; Staff Writer; 06-05-1996
Leonard Sigal, MD, of Robert Woods
Johnson and who was trained in Rheumatology at Yale, was the senior
investigator of the Connaught Lyme vaccine trial:
N Engl J Med 1998 Jul 23;339(4):216-22
A vaccine consisting of recombinant
Borrelia burgdorferi outer-surface
protein A to prevent Lyme disease.
Recombinant Outer-Surface Protein A
Lyme Disease Vaccine Study
Consortium.
***Sigal LH, Zahradnik JM, Lavin
P, Patella SJ, Bryant G, Haselby R,
Hilton E, Kunkel M, Adler-Klein D,
Doherty T, Evans J, Molloy PJ,
Seidner AL, Sabetta JR, Simon HJ,
Klempner MS, Mays J, Marks D,
Malawista SE.
Department of Medicine, University
of Medicine and Dentistry of New
Jersey-Robert Wood Johnson Medical
School, New Brunswick 08903-0019,
USA.
=================
"LYME PARANOIA"-- Robert Schoen, MD,
Yale Rheumatology
"Lyme fear prevails more than
disease", The Washington Times ) Dr.
Mary Jane Minkin;
04-18-1999
"Q: I thought I might have Lyme disease
because I had several of the symptoms: joint pain, fatigue and
headaches. But my blood test was negative. Could I have Lyme disease
anyway?
"A: It's unlikely, but you're not the
first person to express concern to me about having Lyme disease in
spite of a negative blood test.
"While it's especially important at
this time of year to be aware of the warning signs of the disease - a
skin rash around the site of a tick bite, headache, fever, fatigue
and muscle or joint pain - ***Lyme paranoia,*** as I call it, is not
warranted. Even in high-risk areas such as Connecticut, where I
live, the chance of developing Lyme disease after a tick bite is only 1 to
2 percent.
"Many patients come in with relatively
nonspecific symptoms, believing they have Lyme disease," says noted
Lyme researcher and rheumatologist Dr. Robert Schoen, clinical professor
of medicine at Yale University School of Medicine...."
====================================================
"LYME ANXIETY"-- Eugene Shapiro, Yale
Pediatrician
"The degree of anxiety about Lyme
disease that many people have doesn't appear to be justified, given the
positive long-term treatment outcomes we've observed."
============================
============================
THE TRUTH AND THE FACTS >>>>>>>
From Yale University United States
Patent No. 6,344,552
"Lyme disease generally occurs in
three stages. Stage one involves localized skin lesions (erythema
migrans) from which the spirochete is cultured more readily than at any
other time during infection [B. W. Berger et al., "Isolation And
Characterization Of The Lyme Disease Spirochete From The Skin Of Patients
With Erythema Chronicum Migrans", J. Am. Acad. Dermatol., 3, pp.
444-49,(1985)]. Flu-like or meningitis-like symptoms are common at
this time. Stage two occurs within days or weeks, and involves
spread of the spirochete through the patient's blood or lymph to many
different sites in the body including the brain and joints. Varied symptoms
of this disseminated infection occur in the skin, nervous system, and
musculoskeletal system, although they are typically intermittent.
****Stage three, or late infection, is defined as persistent infection, and
can be severely disabling. Chronic arthritis, and syndromes of the
central and peripheral nervous system appear during this stage, as a result
of the ongoing infection and perhaps a resulting auto-immune
disease [R. Martin et al., "Borrelia burgdorferi--Specific And Autoreactive
T-Cell Lines From Cerebrospinal Fluid In Lyme Radiculomyelitis", Ann
Neurol., 24, pp. 509-16
(1988)].****
===============
From United States Patent
No. 4,721,617 ,owned by Russell
Johnson,
Editor of the book "The Biology of
Pathogenic Spirochetes" 1976,
Academic Press.
"Spirochetes are introduced into the
host at the site of the tick bite and this is also the location of the
initial characteristic skin lesion, erythema chronicum migrans (ECM). A
systemic illness ensues due to the lymphatic and hematogenous spread of
B. burgdorferi. The early phase of the illness often consists of the ECM,
headache, fatigue, muscle and
joint aches, stiff neck and chills and
fever. This phase of the disease may be followed by neurologic, joint
or cardiac abnormalities. The chronic forms of the disease such as
arthritis (joint involvement), acrodermatitis chronica atrophicans
(skin involvement), and Bannwart's syndrome (neurological involvement)
may last for months to years and are associated with the persistence of the
spirochete. A case of maternal-fetal transmission of B.
burgdorferi resulting in neonatal death has been reported. Domestic
animals such as the dog also develop arthritis and lameness to this
tick-borne infection. For every symptomatic infection, there is at
least one asymptomatic infection. Lyme disease is presently the most
commonly reported tick-borne disease in the United States.
"The infection may be treated at any
time with antibiotics such as penicillin, erythromycin,
tetracycline, and ceftriaxone.
****Once infection has occurred, however, the
drugs may not purge the host of the
spirochete but may only act to control
the chronic forms of the disease.**** Complications such as
arthritis and fatigue may continue for several years after diagnosis and
treatment."
========================
========================
TREATY VIOLATIONS, NUMBERS TWO AND
THREE:
Article 12
1. The States Parties to the present
Covenant recognize the right of
everyone to the enjoyment of the
highest attainable standard of
physical
and mental health.
2. The steps to be taken by the States
Parties to the present Covenant
to achieve the full realization of
this right shall include those
necessary for:
(a) The provision for the reduction of
the stillbirth-rate and of infant
mortality and for the healthy
development of the child;
(b) The improvement of all aspects of
environmental and industrial
hygiene;
(c) The prevention, treatment and
control of epidemic, endemic,
occupational and other diseases;
(d) The creation of conditions which
would assure to all medical service
and medical attention in the event of
sickness.
EVIDENCE>>>>
THE USA CDC allowed a false standard
for serodiagnosis of "Lyme disease". For one to have diagnosed
and too often, limited treatment of "Lyme disease", a patient must have 4
or 5 specific identifying antibodies to the spirochetal
infection in their blood, while simultaneously, the United States
Government Health Services, allowed for the protection of such an
infection, a vaccine, to be only one antibody-- the very antibody(s) left
of the CDC's standard, and encoded on the same plasmid, and first
identified by Allen Steere, to appear, OspB and OspA (Steere, 1986).
These criteria, of the CDC, affect
populations outside the United States (EUCALB).
THE United States CDC does not
recognize the diagnosis, nor
infection, nor treatment of tick borne
spirochetes, other than Borrelia burgdorferi, when there are several
dozens of strains and species in the United States, and which cause Human
Disease. For example, in the State of California, there are approximately
20 strains of borrelia, that are more related to the relapsing fever
types, but one may only be diagnosed with "burgdorferi" and strains similar to those found in
the Northeastern States, and only in persons genetically predisposed to
arthritis. This serves only a special population of persons, and is
precisely a racial, or genetic bias.
The United States Government funded
scientists who at one time recognized the evidence which
demonstrated that tick borne borrelial infections are related to adverse
outcomes in pregnancy:
1: Duray PH, Steere AC.
[Abstract] Clinical pathologic
correlations of Lyme disease by stage.
Ann N Y Acad Sci. 1988;539:65-79. PMID:
2847622
2: Markowitz LE, Steere AC, Benach JL,
Slade JD, Broome CV.
[Abstract] Lyme disease during
pregnancy. JAMA. 1986 Jun
27;255(24):3394-6.
PMID: 2423719
3: Schlesinger PA, Duray PH, Burke BA,
Steere AC, Stillman MT.
[No abstract] Maternal-fetal
transmission of the Lyme disease
spirochete, Borrelia burgdorferi., Ann
Intern Med. 1985
Jul;103(1):67-8..
PMID: 4003991
While, the United States government is
later funding Institutions who then falsely report:
Am J Med 1995 Apr 24;98(4A):69S-73S,
Lyme disease in children, Shapiro
ED.
Department of Pediatrics, Yale
University School of Medicine, New
Haven, Connecticut 06520-8064, USA.
"Lyme disease is the most common
vector-borne disease among children in the United States; the incidence of
Lyme disease is higher among children than among adults. Extensive
publicity in the lay press about the effects of Lyme disease has led to
widespread anxiety about this illness that is out of proportion to
the actual frequency of severe consequences, especially among
children. The problem is exacerbated
by the difficulty of documenting the
diagnosis (or more often of ruling out the diagnosis in children with vague
symptoms), especially when the diagnosis depends on serologic tests
that are often inaccurate. This caveat applies particularly to
commercial laboratories using
prepackaged kits, which often give inaccurate
results that should not be relied on by themselves to make a diagnosis.
Careful prospective studies have found that nearly 90% of children with
Lyme disease have erythema migrans. ****Although there has been
great concern about congenital Lyme disease, no data suggest that it is a
significant problem***, nor has transmission of Lyme disease through
breast milk been documented. Virtually all children will respond
well to treatment for any stage of Lyme disease. Misdiagnosis is the most
common reason for treatment
failure. Long-term follow-up studies
indicate that the prognosis for children with Lyme disease is
excellent.
PMID: 7726195 [PubMed - indexed for
MEDLINE]"
Additionally, The evidence from the
SmithKline Beacham LYMErix vaccine
trial was that 4 of 13 pregnant women who
were administered this vaccine, and
who were followed, had
miscarriages. Therefore, there are
many areas of
correlation to tick borne diseases, and adverse outcomes in
pregnancy.
=======================
=======================
VIOLATION NUMBER FOUR:
Article 15
1. The States Parties to the present
Covenant recognize the right of
everyone:
(a) To take part in cultural life;
(b) To enjoy the benefits of
scientific progress and its
applications;***
(c) To benefit from the protection of
the moral and material interests
resulting from any scientific,
literary or artistic production of
which
he is the author. 2. The steps to be
taken by the States Parties to the
present Covenant to achieve the full
realization of this right shall
include those necessary for the
conservation, the development and the
diffusion of science and culture.
3. The States Parties to the present
Covenant undertake to respect the
freedom indispensable for scientific
research and creative activity.
4. The States Parties to the present
Covenant recognize the benefits to
be derived from
the encouragement and development of
international contacts and
co-operation in the scientific and
cultural fields.
Article 15 (b), clearly has been
violated. The United States Centers
for Disease Control, limits
information regarding the clinical,
diagnostic, and treatment domains of
tick-borne illnesses. See the
patents above, our complaint about the
United States Centers for
Disease control "standard" for blood
test diagnosis:
1) Whereas one antibody is
adequate for protection
from the infection (the Lyme
vaccines), one similarly
specific antibody is alleged
to not sufficient to be
diagnostic, according to the
USA CDC.
2) The Guidelines published by the
Infectious Diseases Society of
America.
These authors published
differently in the past, and yet
continue to
receive United States Federal
grant money.
Non-disclosed information obtained by
grants:
The new information that confirms the
pathophysiology of MS and Lyme has
not been published, yet this data was
collected during the 1997-2000 NIH
Chronic Lyme Disease treatment trial
by Tufts: The high incidence of
the presence of HLA-DQB1*0602 on
Chronic Lyme patients. To quote Dr.
Klemper:
"It turns out that if you look at the
first 51 patients with post-
treatment chronic Lyme disease, the
patient population that participated
in our study, there was a very high
incidence of DQB0602 with an odds
ratio of 770%. So it may well be that
exposure to THAT organism with
THAT background of HLA haplotype may
lead you to develop chronic
symptoms. That is a hypothesis that
needs to be tested. It would
obviously lead to an entirely new form
and approach to therapy."
The non-reporting of objective data
over the reporting of subjective,
invalid data (the assessment tools FIQ
and SF-36), calls into question
integrity in reporting scientific
data, and the validity of further and
previous conclusions from such
analysts. The FIQ was never validated
for Lyme disease. The SF-36 is not to
be used in cases of cognitive
impairment.
====================
====================
UNITEDNATIONS E
Economic and SocialCouncil
Distr.GENERAL E/C.12/2000/123
October
2000 Original: ENGLISH
COMMITTEE ON ECONOMIC, SOCIAL
AND CULTURAL RIGHTS
Twenty?fourth session
Geneva, 13 November?1 December 2000
Item 3 of the provisional agenda
IMPLEMENTATION OF THE INTERNATIONAL
COVENANT
ON ECONOMIC, SOCIAL AND CULTURAL
RIGHTS
Substantive issues arising in the
implementation of the International
Covenant on Economic, Social and
Cultural Rights: Day of General
Discussion "The right of everyone to
benefit from the protection of the
moral and material interests resulting
from any scientific, literary or
artistic production of which he is the
author (article 15.1 (c) of the
Covenant)" organized in cooperation
with the World Intellectual Property
Organization (WIPO)
Monday, 27 November 2000
"Approaching Intellectual Property as
a Human Right:
***Obligations Related to Article 15
(1) (c)"***
5.
The development of a global economy in
which intellectual
property plays a central role
underscores the need for the human
rights
community to claim the rights of the
author, creator and inventor,
whether an individual, a group, or a
community, as a human right. It is
equally important for human rights
advocates to protect the moral
interests and rights of the community
to securing access to this
knowledge. ***A third human rights
consideration is whether relevant
laws identifying rights to creative
works and scientific knowledge and
determining the subject matter which
can be claimed as intellectual
property are consistent with respect
for human dignity and the
realization of other human rights.***
6.
Recent trends underscore the need for
a human rights
approach. As various
economic actors rush to stake claims
over
creative works and forms of knowledge,
human rights are being trampled:
creators are sometimes losing control
of their works, the free exchange
of information so vital to scientific
discovery is being constrained,
and publicly held resources, including
the cultural and biological
heritage of groups, privatized. New
technologies, such as computers and
Internet communications, are raising
issues about the relevance of
traditional forms of intellectual
property protection. The establishment
of the World Trade Organization in
1994 and the coming into force of the
international Agreement on
Trade-Related Aspects of Intellectual
Property Rights (TRIPS) in 1995 have
strengthened the global character
of intellectual property regimes. In
the years ahead the provisions of
TRIPS are likely to reshape
intellectual property law
and relationships
within and across
countries. ***Unless human rights
advocates provide
an effective intellectual and
organizational counterweight to
economic
interests, the intellectual property
landscape will be reshaped in the
years ahead without adequate
consideration of the impact on human
rights.***
=========
We contend that although intellectual
property rights are guaranteed in the arena of biotechnology, the
property rights to one's one intellectual and physical property,
one's own genetic code, is overlooked. For while one set of
patients, those with the Lyme arthritis haplotypes (Allen Steere,
Tufts University), may be diagnosed with "Lyme disease", those with the
Multiple Sclerosis haplotypes, or those with multiple infections, and
whose blood tests do not match the CDC's definition of "Lyme disease",
are instead abused, and not privileged to the retreatment of this
relapsing condition.
This served the economic interests of
the patent holders of the Lyme disease vaccines and test kits, only,
and those who stood to profit from the denial of care to these patients,
the insurance companies, which, by virtue of their United States' legal
right to deny treatment for disabling health conditions, known as
"Managed Care", have in all practicalities, taken away our natural
right to self-determination.
Kathleen M. Dickson