Persons who are ill with Lyme and/or Other
Arthropod-borne Diseases (LOADs) declare this initiative to reverse the
effects of the influence of a group of university-based
researchers (UBRs) who say "Lyme disease" is Overdiagnosed
and Overtreated (1, 2). It is not
yet known what are all the pathogens carried and transmitted via
tick attachment.(3,4). Therefore,
manifestations of illness as a result of infections transferred via tick
bite must be evaluated objectively/clinically.
It shall be recognized that the objectives of these UBRs do not include preserving patient wellness, but target the profitability of these diseases. The vast percentage of NIH grants focuses on diagnostics and vaccine candidate development and not in discovering cures for Tick borne diseases (5, 6, 7).
UBRs who report opinion papers in medical journals regarding outcomes of certain subsets of LOADs patients deliberately and publicly minimize the effects of LOADs patients physical presentation under the umbrella of the broader term "Lyme Disease", as defined by the Center for Disease Control (CDC) in its case definition (1, 2, 8). In the process, they discard other manifestations of Lyme disease and/or the Arthropod-borne Diseases (LOADs) with poorer outcomes which are also described by the CDC as other clinical descriptions, by assigning them other diagnoses, even psychiatric ones, without objective criteria for this reassignment. This activity is endorsed by the United States National Institutes of Health (NIH) and CDC (9).
In addition to using various means to deny LOADs patients their health, the character and integrity of LOADs are assaulted, as they are publicly declared "not rational" as quoted in the press, when patients advocate for a clearer understanding of the results of LOAD infections and cooperation in achieving recovery (10).
International acceptance of the Human Rights Declaration demonstrates acceptance of the respect and protection of the
LOADs patients frequently suffer the loss of all 3 realms of autonomy due to the unscrupulous activities of this body UBRs as they have chosen to pursue the financial advantages and US CDC and NIH approval in denying patients their right to medical care, when they downplay the severity and reassign the origin of LOADs patients physical complaints.
The effect of the influence of these UBRs, is to diminish LOADs patients' chances for complete recovery and/or relief from their debilitating symptoms and enables social and medical discrimination against LOADs patients, which are violations of the Articles and Prinicples of the International Human Rights Declaration listed below.
LOADs patients will win back their respect as human beings who suffer
debilitating diseases which compromise physical and mental functioning
as well as see US Government funding more equally distributed to those
who seek to find a cure for LOADs, rather than be exclusively distributed
to those who are established to profit from prevention and diagnostics.
If funding discovering cures for illnesses such as LOADs is not a goal
of the US NIH and CDC, the US government should oversee a shift in the
goals of these entities to address these needs.
LOADs patients everywhere have the right to sustain a minimum level of functioning and health until such time as cures are found. It is the LOADspatients obligation to society and society's obligation to LOADs patients that LOADs patients remain functional, if medical intervention and treatment avails that functionality.
The empirical evidence therefore stands absolute. If antibiotic and/or other treatment improves an LOADs condition, the Lyme Disease Patient (LDP) should not be denied these medical interventions.
The following are the pertinent Human Rights Articles and Principles that defend LOADs right to empirical treatment for Lyme Disease.
"The Declaration recognizes that the "inherent dignity of all members of the human family is the foundation of freedom, justice and peace in the world" and is linked to the recognition of fundamental rights towards which every human being aspires, namely the right to life, liberty and security of person; the right to an adequate standard of living; the right to seek and to enjoy in other countries asylum from persecution; the right to own property; the right to freedom of opinion and expression; the right to education, freedom of thought, conscience and religion; and the right to freedom from torture and degrading treatment, among others. These are inherent rights to be enjoyed by all human beings of the global village -- men, women and children, as well as by any group of society, disadvantaged or not -- and not "gifts" to be withdrawn, withheld or granted at someone's whim or will."
Adopted and opened for signature, ratification and accession
by General Assembly resolution 2200A (XXI) of 16 December 1966
entry into force 3 January 1976, in accordance with article
27
http://www.un.org/Depts/Treaty/final/ts2/newfiles/part_boo/iv_boo/iv_3.html
ratified by the United States of America October 5, 1977
Considering that, in accordance with the principles proclaimed in the Charter of the United Nations, recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world,
Recognizing that these rights derive from the inherent dignity of the human person,
Recognizing that, in accordance with the Universal Declaration of Human Rights, the ideal of free human beings enjoying freedom from fear and want can only be achieved if conditions are created whereby everyone may enjoy his economic, social and cultural rights, as well as his civil and political rights,
Considering the obligation of States under the Charter of the United Nations to promote universal respect for, and observance of, human rights and freedoms,
Realizing that the individual, having duties to other individuals and to the community to which he belongs, is under a responsibility to strive for the promotion and observance of the rights recognized in the present Covenant,
Agree upon the following articles:
2. All peoples may, for their own ends, freely dispose of their natural wealth and resources without prejudice to any obligations arising out of international economic co-operation, based upon the principle of mutual benefit, and international law. In no case may a people be deprived of its own means of subsistence.
3. The States Parties to the present Covenant, including those having responsibility for the administration of Non-Self-Governing and Trust Territories, shall promote the realization of the right of self-determination, and shall respect that right, in conformity with the provisions of the Charter of the United Nations.
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.
13. The Governments and organizations which sent replies to the communication from the Secretary-General emphasized the need to ensure that scientific progress benefits individuals and develops in a manner respectful of fundamental human rights.
18. Referring to paragraph 34 of the Secretary-General's most recent report (E/CN.4/1995/74), the Holy See stated that it could be appropriate to recall what had constituted the main argument of the Holy See's reply, namely the inherent dignity of every human being from the first moment of conception, as the basis for the right to life and the principle that should inspire all research in the field of life sciences. The wording of the last sentence of paragraph 34 appears somewhat to distort the meaning of the Holy See's reply. The following wording would be preferable: "... biogenetic research and experimentation touched on vast areas of social life, and determined conditions for the exercise of certain economic and social rights".
19. The Council for International Organizations of Medical Sciences
(CIOMS) stated that bioethics in the health sector
should be guided by generally accepted principles, in particular by
the principle that an adequate level of health care should be recognized
as a universal and fundamental human right. ............
27. Principle 1.4 includes the following provisions relating to improving
the cost-effectiveness of resource allocation
and health planning:
"With the development of relatively new methods for measuring the burden of disease on human life that constitute potential tools for guiding decisions for improving the cost-effectiveness (efficiency) of resource allocation and health planning, it is essential that the further refinement of these methods be guided by the principles of equity and non-discrimination on such grounds as age, sex, ethnic origin, personal status, etc., as well as efficiency, and that countries with an interest in applying these tools be provided with the resources for building capacities for undertaking these analyses in a manner consonant with national and local needs."
28. With respect to applying bioethical concepts to relevant aspects of human rights, principle 2.1 states that:
"important opportunities
exist for applying bioethics concept in developing the content of human
rights relating
to health, health protection, and health care. Such rights can be clustered
into 3 categories, viz.:
Since it is not known what are all the pathogens transferred via tick bite or attachment, empirical evidence of treatment outcomes is the logical approach to treatment. Many LOADs patients have been observed to require long courses of antibiotics. The evidence is that a significant portion of LOADs patients have had symptom resolution even in the absense of positive serology as a result of this clinical view of the condition of symptoms vs. treatment (15)
Substantial scientific evidence exists which supports persistent infection (11,16), scant evidence to support a Lyme disease infection initiates strictly an autoimmune disease (17). A diagnostic reassignment of LOADs to an autoimmune disease when symptoms overlap exactly those symptoms which persist in the undertreated LOADs patient, is financially favorable to insurance companies, pharmaceutical companies, and scientists and universities who are involved in anti-inflammatory medicines trials or vaccine trials.
Denying treatment based on the opinion that LOADs exclusively becomes an autoimmune disease without scientific proof is a Human Rights abuse (1,2).
Unethical associations between the medical community and insurance
companies have been overlooked by US legislators (18,19).
No insurance company should sponsor a treatment study of an illness wherein
all manifestations of an illness have not been accurately and collectively
considered in the study such that the study results could potentially skew
the reporting of treatment protocols. (lifeSpan Link) This serves
to enable the insurance company to declare treatment of the various subsets
of the illness (i.e. Lyme Disease, the case definition VS clinical descriptions
or subsets not included in the study) to be experimental and deny coverage
for treatment on that basis (20).
This dismissal of selected facts and potentially harmful evidence demonstrates
a lack of medical integrity, as is attempting to purvey the vaccine
as a remedy for the anxiety over Lyme Disease.
Presently there is no absolute known cure for all cases or clinical descriptions of LOADs as they manifest beyond the first 30 days after infection.
LOADs patients have the right to be treated with antibiotics and other
mechanisms of immune and health enhancement, if they feel they would like
to at least try being treated or have discovered that treatment effects
improvement in their symptoms until cures are found, as is the agreement
signed by the US Government in the
Human Rights Declaration.
Since an entirely effective medical treatment regimen has not yet been determined, the empirical evidence in the individual patient case, or patient response to available therapeutic intervention, with informed consent of the patient, must determine the course of the LOADs patients treatment.
The objective of medicine is still to effect healing. It is a Human Rights abuse for a physician
The correct and logical approach in this situation to try to effect
patient recovery or at least, dimunition in disabling symptoms. Choosing
an autoimmune disease as the diagnosis serves the goals of insurance companies
and the goals of the CDC, which is to downplay the seriousness of TBDs.
LOADs patients, through this activity of reassigning their diagnoses
of an infectious disease to an auto-immune illness, are being denied the
right to obtain medical treatment for difficult to cure disease, and possibly,
set of diseases, which affect a patients ability to be functioning, contributing
members of society, and is known to require the highest standard of treatment.
Treatment of an illness with the highest medical standard of treatment
available
is a Human Right agreed to by the United States upon ratification of
the the International Declaration of Human Rights.
The view that persons with diseases should be left untreated for the purpose of
It is not logical for a diagnostician
If it financially serves insurance companies to retain medical experts who cite opinion papers
These activities are deliberate means of denying patients treatment of LOADs and are therefore a human rights violation.
All communities worldwide should be aware of these mechanisms of denying
or reassigning diagnosis and thus
restricting treatment, as it may not be restricted to practice in LOADs
cases. Just as the discovery of new types of arthropod-borne infections
is rising exponentially, so too is the potential for the type of human
rights abuses that LOADs patients now suffer.
When it is inferred that patients, instead,
Physicians
The anecdotal evidence is that some patients who were both infected
with Borrelia burgdorferi and administered recombinant OSP A, the vaccine,
suffer adverse effects. The evidence exists for this in animal studies
(21). It is a violation of Principle 14
to not report the adverse effects of new biotechnology products, such that
they continue to be used and threaten the well-being of others.
Efforts by many US UBRs and other scientists
to identify Borrelia burgdorferi genetic material for patenting and use
The potential exists for biotechnology entrepreneurs who are recipients
of NIH funding for these endeavors to later interpret the existence of
LOADs infections based on the patients serological response.
(1) The Overdiagnosis of Lyme Disease. Steere, AC,
Taylor, E., McHugh, MS, Logigian, EL. April 14, 1993, JAMA, Vol 269,
pp.
1812-1816
(2) Reid, M.C., R.T. Schoen, J. Evans, J.C. Rosenberg,
and R.I.
Horwitz.
1998. The consequences of overdiagnosis and overtreatment of Lyme
disease. Ann Int Med 128:354-362. .
(3) J Wildl Dis 1997 Jul;33(3):466-73
Antibodies to multiple tick-borne pathogens of babesiosis,
ehrlichiosis, and Lyme borreliosis in white-footed mice.
Magnarelli LA, Anderson JF, Stafford KC 3rd, Dumler JS
Department of Entomology, The Connecticut Agricultural Experiment
Station 06504, USA.
(4) J Med Entomol 1995 Nov;32(6):765-77
General framework for comparative quantitative studies on
transmission of tick-borne diseases using Lyme borreliosis in
Europe as an example.
Randolph SE, Craine NG
Department of Zoology, University of Oxford, United Kingdom.
(5) FDA TALKPAPER pub number: T-99-10 Pre
Vue
Borrelia burgdorferi Test Kit
(6) University making a killing off drug patent
AIDS drug has produced millions of dollars for Yale's coffers
By Erin White
http://www.yale.edu/ydn/paper/4.7.97/i-1drug.html
(7) NIH Grants related to Lyme disease:
http://www.geocities.com/HotSprings/Oasis/6455/grants-all-institution.txt
(8) JAMA Vol. 283 No. 5, February 2, 2000
Elyse G. Seltzer, MD; Michael A. Gerber, MD;
Matthew L. Cartter, MD; Kimberly Freudigman, PhD; Eugene D. Shapiro,
MD
Long-term Outcomes of Persons With Lyme Disease
(9) Allen Steere honored as Astute Clinician by
NIH. Talk given
November3, 1999, NIH, Bethesda, MD
(10) The Boston Herald, Novermber 3, 1999,
Patients to protest talk by Lyme disease discoverer
by Michael Lasalandra
http://www.bostonherald.com/bostonherald/health/lyme11031999.htm
(11) Long-Term Inflammation in Lyme Borreliosis
A Medline-Literature Survey by Joachim Gruber
Date: February 3, 1999
http://www.lymenet.de/LITERATUR/niches.htm
(12) The fate of Borrelia burgdorferi, the agent for
Lyme disease, in
mouse macrophages. Destruction, survival, recovery. Montgomery RR;
Nathanson MH; Malawista SE
Address Department of Internal Medicine, Yale University School of
Medicine, New Haven, CT 06510.J Immunol, 150(3):909-15 1993 Feb 1
(13) Invasion and cytopathic killing of human lymphocytes
by
spirochetes causing Lyme disease. Dorward DW; Fischer ER;
Brooks DM National Institute of Allergy and Infectious
Diseases,
Rocky Mountain Laboratories, Hamilton, Montana 59840, USA. Clin
Infect Dis, 25 Suppl 1():S2-8 1997 Jul
(14) Genomic sequence of a Lyme disease spirochaete,
Borrelia
burgdorferi. Fraser CM; Casjens S; Huang WM; Sutton GG; Clayton R;
Lathigra R; White O; Ketchum KA; Dodson
R; Hickey EK; Gwinn M; Dougherty B; Tomb JF; Fleischmann RD;
Richardson D; Peterson J; Kerlavage AR; Quackenbush J; Salzberg S;
Hanson M; van Vugt R; Palmer N; Adams MD; Gocayne J; Venter
JC; et al The Institute for Genomic Research, Rockville,
Maryland 20850, USA. Nature, 390(6660):580-6 1997 Dec 11
(15) Donta, S.T.,Clinical Infectious Diseases, 1997
(Suppl 1):S52-6
Tetracycline Therapy for Chronic Lyme Disease,
Boston University Medical Center and Boston Veterans Affairs Medical
Center, Massachusetts 02118, USA.
(16) Art Dohertys Links on Lyme
Persistence (link no longer active)
http://www.geocities.com/HotSprings/Oasis/6455/persistence-biblio.html
Others (link no longer active)
http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html
(17) Huber, B, and Gross, D., Comment Viewpoint
Trends in Microbiology 211, vol 6 no 6 June 1998
"The mimic of molecular mimicry uncovered
Tufts Pathology
(18) NEMC and LifeSpan in partnership
http://www.nemc.org
Steere is involved in an NIH granted treatment study
of Chronic Lyme
disease which excludes patients who are seronegative,
although
seronegativity is recognized by the CDC as a condition
of Lyme disease
and does not preclude its diagnosis.
http://www.NEMC.org/gcrc/lymedescrip.htm
http://www.NEMC.org/gcrc/why%5Fparticipate.htm
(19) Evans and Managed Care From the Yale Rheumatology
website:
Janine Evans, M.D., Associate Professor of Medicine, Associate Program
Director
My interests are clinically oriented and focus on Lyme
disease... Another area of interest has been in
managed care.
I have been appointed as the Medical Director of Yale
New Haven
Hospitals Independent Physicians Association, an organization
composed of the
majority of physicians with privileges at Yale New Haven
Hospital. As
the percent of patients enrolled in managed care programs
increases we
have been designing and implementing ways of managing
our costs while
maintaining the delivery of high quality medical care.
Evans References include:
Reid, M.C., R.T. Schoen, J. Evans, J.C. Rosenberg, and R.I. Horwitz.
1998. The consequences of overdiagnosis and overtreatment of Lyme
disease. Ann Int Med 128:354-362. .
(20) CDC Case and clinical descrptions of Lyme
Disease
"Case Definitions for Infectious Conditions Under Public Health Surveillance
MMWR 46(RR10);1-55
Publication date: 05/02/1997
http://wonder.cdc.gov/wonder/prevguid/m0047449/entire.htm#Table_1
LYME CLINICAL DESCRIPTION AND DIAGNOSIS
http://www.cdc.gov/ncidod/dvbid/Lymediagnosis.htm
(21) Schell, R, et al, University of Wisconsin, Madison.
Infection and
Immunity 2000;68:658-663.
Occurrence of severe destructive lyme arthritis in hamsters
vaccinated with outer surface protein A and challenged with
Borrelia burgdorferi.
Croke CL, Munson EL, Lovrich SD, Christopherson JA, Remington MC,
England DM, Callister SM, Schell RF
Wisconsin State Laboratory of Hygiene, University of Wisconsin, Madison,
Wisconsin 53706, USA.
Acknowledgements:
Art, Karen, Joachim, Ken, Lynn, Harold, Marjorie, Georgia