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Finally, The Formal Response

I wrote my letter to the insurance company, AKA POMCO, the
"Experts in Self Insurance" on December 10, 2001 and
after some initial BS responses and continuing to turn down
all the Dr. Rea submissions, they finally sent this letter in
October of 2002.  Is that almost a full year or have I
lost touch with reality?

"Dear Ms. Lande:

This letter is in response to a request for benefit
information for "allergy related services" rendered
at Environment Health Services of Dallas.

Our recent review, performed by a peer medical consultant,
recommended payment for multiple complete blood counts and
would and blood cultures, as well as toxicology testing
after confirmation that toxicology testing had not been
performed.  These services, the blood counts, cultures
and toxicology testing, have been benefited in full (I think
we have received about $1,000 vs about $15,000 of submissions)
per the terms of your Health Benefit Plan.

However the consultant noted that intradermal testing and
immunotherapy are "clearly not medically necessary or
appropriate for the diagnosis of aplastic anemia." 
The consultant noted the "discussion of the presence of
seasonal allergies and chronic sinus infections affecting the
patient’s immune system" and concluded that the skin
testing and immunotherapy done were not related to the
diagnosis or treatment of aplastic anemia and are not
medically necessary.

Therefore, under the terms and liminations of your Health
Benefit Plan as noted in our letter of June 20, 2002, no
further benefits are available for services rendered at
Environmental Health Services of Dallas.

Sincerely,

Sally K. Frank, R.N.

Medical Analyst"

 

Now, I must admit, I feel much better knowing that an
unnamed "consultant" and Ms. Frank, the world
renowned expert on immunology have taken so long to carefully
consider our case (A year?) and in the end, have decided that
Dr. Neil Young (the real word renowned expert on AA who
states: "More
recently, an active role of the immune system in marrow
destruction has been recognized. In 1999, most patients can be
treated effectively either by replacement of the marrow
through stem cell transplantation or by drugs that suppress
immune system function…
), Dr. William Rea (First
World Chair in Environmental Medicine) and Dr. Sherry Rogers
(Author of 12+ books on how our immune systems is being
destroyed by the toxins in our environment and/or the foods we
eat) don’t know what they are doing and we must therefore pay
for all of their life-saving treatments out of our own
pockets.

Dr. Rea and the preceding referral by Dr. Sherry Rogers (on
the insistence of my wife, I might add), saved my life! 
Sue and I are the only one who really know for sure, because
we have been battling this thing side by side for nearly two
years.  The conventional treatment was not only not
working, it was killing me.  I narrowly escaped death on
four separate occasions while being administered the drugs and
other treatments recommended by the conventional wisdom.

It was only after completely detoxifying my system and
determining  what was causing my problems in the first
place that I began to turn the corner.  In addition to
the life saving efforts of Dr. Kirshner and his staff, I no
have to thank Dr’s Rea and Rogers for giving me back my
life.  I am certainly not fully recovered, but my quality
of life has returned to 85-90 per cent of what it was and I
have a certain level of confidence that if I get on the
program and consistently stay on the program they recommend, I
will ultimately beat this monster tagged "Aplastic
Anemia".  

When my blood counts reach a level that will provide
undisputed evidence, I will again go after the insurance
company and this time with a lawyer by my side.  I will
do it not only for me and my wife but for the countless
thousands of others who have been turned down by their
Pharmaceutically sponsored insurance carriers.  If it
ain’t a patent protected drug, it can’t work, can it? 
(BTW, along the way, I was prescribed and they paid for
SMZ-TMP, Celebrex, Propanolol, Metronidazole, Cipro, Prilosec,
Lorazepam, Desferol, Diflucan, Vioxx, Cyclosporince,
Prednizone, Vankomyacine and a few dozen more).  None of
that stuff was working and in fact, it was killing me!

I now have two new goals:  

1. Become a Professional Golf Association member so I can
write my book "From AA to the PGA", and

2. Get my CBC’s to a level that will provide irrefutable
proof that my insurance company is wrong and get them to pay
for my treatments.

Maybe I should also thank  POMCO, The Self Proclaimed
"Experts in Self Insurance" because without them, I
would not be as driven.  I have always enjoyed a good
fight! 

Quote of the Day from Dr. Rogers book "Tired of
Toxic"

"If the oil light on your car goes on, you can always
unscrew the bulb, smash it with a hammer or buy a new
car.  That’s analagous to the kind of medicine insurance
companies pay for: drugs, drugs and more drugs."

Oh and, by the way, if I previously suggested that some of
you go to the Patient Advocacy Foundation for help, don’t
bother.  They are useless!  After several weeks of
phone tag and useless conversation they opted out on trying to
help me.  Thanks for nothing!

Releasing my anger and directing it at the appropriate
recipients is good for the soul!  I feel so much better
now, and I will be sending a sanitized version to the
insurance company, AKA "The Experts in Self
Insurance".

Letter Delivered to Insurance Company on December 10,
2001

Bruce and Susan Lande

4754 Lawsher Drive

Syracuse, NY 13215

315-492-7575

 

December 6, 2001

 

POMCO

P.O. Box 6329

Syracuse, NY 13217

 

To Whom It May Concern:

Regarding treatment protocols and rejection of claims for Bruce Lande
(474-58-5630), spouse of Susan Lande (105-440-065) an employee of Syracuse
City School District (Plan 500M) we respectfully submit the following
information and documentation.  I
was diagnosed with Aplastic Anemia in January of 2001 and have tried all
conventional treatments that have so far been unsuccessful. 

Because Aplastic Anemia is a very rare disease that affects less than 6
people in a million1, 2, there are few, if any, durable
treatment protocols.  Virtually
all treatment regimens are still investigational2, 10 by their
very nature and the medical community is still struggling10
with trying to find lasting cures for this chronic and eventually fatal
illness.

 It is also a generally
accepted fact in the medical community that they are not sure what causes
Aplastic Anemia.12 In most cases it is listed as idiopathic and
in many cases it is actually caused by the very medications designed to
help us.11 The treatments prescribed by EHCD are no more
experimental or investigational than the commonly accepted protocols of
Horse Serum and Rabbit Serum!

My wife, who is a Registered Nurse, and I have been investigating the
illness, its causes, effects and treatments now for well over a year. 
We have read countless books, case studies, clinical studies and
other documents and have developed a very good understanding of the
illness.  We know that the
disease is one of over eighty illnesses categorized as “Immune Related
Disorders or an autoimmune disease”. 9,10 We also know that
the research into Immune Disorders is extremely complex and there are a
myriad of approaches being used in an attempt to cure these disorders. 

You have readily paid for treatments as seemingly bizarre as Horse
Serum (ATG) and Rabbit Serum (ALG) which is the commonly accepted protocol
for Aplastic Anemia, so why would you challenge treatments that are trying
to rebalance the immune system that has been battered by chemical toxins
from virtually every quarter? 2  

Our fundamental position is that the treatments prescribed and
administered by Dr. Rea at the EHCD are no less experimental than any
other treatments already endured.  I
responded better to the EHCD strategy than any previous treatments and am
now in a far better position to endure further treatments in my quest to
defeat this illness. 

People don’t die from Aplastic Anemia; they die from infections
and side effects of toxic medications.10 Anything I can do to
strengthen my immune system and enhance my body’s ability to ward off
infection will ultimately help save my life. 
Your refusal to pay for these treatments is causing incredible
stress and may ultimately help kill me.

The treatments that you are challenging are all designed to rebalance
the immune system and strengthen my body’s natural defense system. 
They have in fact already worked better than the highly toxic and
dangerous treatments currently being prescribed. Cyclosporine
is a very dangerous and toxic treatment. “Evaluate renal and liver
functions often by measuring BUN, serum creatinine, serum bilirubin and
liver enzymes; may increase risk of infection and lymphoma; reserve IV use
only for those who cannot take PO…Documented hypersensitivity;
uncontrolled hypertension or malignancies
2

My ability to beat this illness is highly dependent on the strength of
my body to resist infections and tolerate the numerous treatments that are
being tried. Before my trip to Texas, I was virtually unable to walk for
five minutes without needing rest and was in and out of the hospital with
various infections.  Since
returning, I am able to vigorously exercise for thirty minutes a day, have
increased stamina and have only been hospitalized one time with a sepsis
infection caused by my central line. I am anticipating another round of
prescribed treatment and fully believe that the EHCD treatments have
strengthened my body to an extent that I may be able to tolerate the
chemotherapy that is now being recommended.

On the recommendation and support from several Medical Doctors (NY; Dr.
Jeffrey Kirshner, MD Hematologist, Syracuse, NY; Dr. Jeffrey Lancet, MD,
Hematologist, Rochester, NY; Dr. Sherry Rogers, MD Environmental
Allergist, Syracuse; and Dr. William Rea, MD Clinical Ecologist, Dallas,
TX) I traveled to the Environmental Health Center in Dallas, TX. 
Dr. Rogers has been treating my wife for well over 20 years and you
have been paying for a portion of her treatment protocols.  She is the author of over ten highly regarded books on the
subject of Environmental Illness and has cured thousands of people in her
lifetime. 

Dr. Kirshner is my primary Hematologist in Syracuse and has stated on
numerous occasions that because Aplastic Anemia is such a rare disorder we
should not rule out any reasonable treatment strategy. 
He and his staff are in support of my strategy and have noted an
improvement in my stamina since returning from Dallas. 

Dr. Kirshner has also offered to write a letter documenting his
position that “Because Aplastic Anemia is such a rare disease, we have
very little practical experience with treatment protocols. The efforts by
Mr. Lande to balance his immune system are definitely as appropriate as
any other treatment we have attempted and am in definite support of his
decision to try this approach.  My
Nurse Practicioner, Kathy Klinger and I have noted a definite improvement
in his stamina, strength and ability to deal with his illness since his
return from the EHCD in Dallas.”

Dr. Lancet is part of the Bone Marrow Transplant team in Rochester that
has been heavily involved in my care and he and his staff are also in
support of me doing everything I can do to build up my immune system prior
to further treatments.

Dr. Lancet is also willing to document his support of the EHCD
approach and has stated the following: “Aplastic Anemia is indeed an
immune system disorder and any and all efforts to balance the immune
system should be attempted prior to a Bone Marrow Transplant. 
Because of the high morbidity and morality rate of BMT’s,
virtually any reasonable treatment protocol is a worthwhile endeavor. 

We co-ordinate our efforts to treat Mr. Lande with Dr. Kirshner in
Syracuse and we have all noted an improvement in his condition following
the treatments in Dallas.  It
is extremely important that Mr. Lande continue to do everything possible
to maintain his strength and stamina while dealing with his illness. 

We are currently evaluating a high dose treatment of Cytoxan that
has produced positive results for a number of patients at Johns Hopkins in
Baltimore and will likely begin that protocol in February. Although his
CBC counts have continued at the same level for almost a year, his stamina
as a result of the EHCD treatment will likely increase the probability of
remission, cure and/or survival from this protocol.”

This EHCD, founded in 1974, is internationally
renowned for the treatment of Immune Related and Environmental Diseases. 
Dr. Rea3 is an experienced physician with impeccable
credentials and his treatment protocol has helped thousands of patients
recover from Immune Related Disorders. 
Other insurance companies and workmen’s compensation regularly
cover his treatments. 

 

We are requesting that our claims be covered in the
same manner.  It is an
undisputed fact that Aplastic Anemia is an Immune Related Disorder. 

 

Acquired
Aplastic Anaemia



Dr Neal S. Young


National
Institutes of Health,

Bethesda,

Maryland, USA.

 

In 1888, Paul
Ehrlich, in describing the autopsy of a young woman who had died
after a brief catastrophic illness characterized by symptoms of
anemia, bleeding, and infection, was forced to conclude from the
absence of nucleated red cells in the circulation and the fatty
appearance of the femur "a deficient functioning of the bone
marrow" ("ein mangelhaftes Functioniren des
Knochenmarkes")1. Vaquez and Aubertin, following
Ehrlich in the discussion of a similarly fatal French case, named
the disease "la forme aplastique" to emphasize "anhématopoièse"2.
Through the accumulation of case reports and autopsy findings in
the early part of the twentieth century, aplastic anemia was
recognized as the paradigm of bone marrow failure. Aplastic anemia
appeared as a frequent result of industrial benzene exposure, in
Santesson’s Swedish bicycle factory workers and in Martland’s
descriptions of rapidly fatal pancytopenia among Newark leather
workers. Aplastic anemia also was recognized as a rare
complication of medical drug use: A virtual epidemic of marrow
failure appeared to follow the introduction of the antibiotic
chloramphenicol in the 1960s. From the clinical associations with
chemicals and drugs and the increasingly familiar experience of
marrow depression caused by the purposeful use of cytotoxic drugs
in cancer chemotherapy, direct toxic effects were assumed to
explain the disease. More recently, an active role of the immune
system in marrow destruction has been recognized.

 

Given the fact that the immune system is
malfunctioning, it stands to reason that a protocol that would help
balance the immune system would be helpful in treating the immune
disorders.  The Environmental Health Center – Dallas is a clinic
dedicated to solving difficult, seemingly unsolvable clinical problems.

During the past 25 years, the Environmental Health Center -Dallas (EHC-D)
has grown substantially as they have sought to provide the most advanced
and effective patient care, testing and treatment available. A number of
specific and well-documented treatment protocols have evolved over those
25 years including the following:

Diagnostic Testing

Skin Testing

We offer an extensive range of tests for sensitivities to pollens,
molds, dust, danders, foods and chemicals. Preservative-free
standard and customized antigens are used. We use the latest
scientifically derived serial endpoint titration and neutralization
techniques.

Laboratory Tests/Services

A wide range of tests include:

  • General health survey
    blood tests
  • Immune assessment,
    including T&B lymphocyte panels and immunoglobulins
  • Vitamin, mineral, amino
    acid, lipid and anti-pollutant enzyme analyses
  • Pesticide and other
    chemical blood and fat analyses
  • Blood oxygen evaluation

Special Tests Include:

  • Double-blind inhaled
    challenge tests to determine chemical sensitivity
  • Binocular iris corder (pupillography)
    testing for evaluation of autonomic neurological function
    operated and supervised by the Kitasato University Ophthalmology
    Dept. – the world experts in neuropthalmologic toxicity – under
    the direction of Professor Ishikawa.
  • Exercise stress tests
    under environmentally controlled conditions to evaluate
    cardiovascular system function
  • Lung function testing
    for occupational and other environmentally induced asthma and
    lung disease
  • Mold testing kits for
    the home or office
  • Neurometer for
    peripheral neuropathy
  • Balance studies in
    cooperation with Dr. Daniel Martinez
  • SPECT brain scan,
    Ultrafast CAT scan and other scintigraphic heart, lung and blood
    vessel evaluations in cooperation with Drs. Simon and Hickey
  • Air, food, water, soil
    measurements by GC/MS

Nutrition

Our department offers a complete nutritional assessment from a
registered and licensed EHC-D dietitian specifically educated in
optimum less-polluted nutrition. 

Treatment

Immunotherapy

This antigen therapy program provides an individualized treatment
regime to patients with sensitivities. (The EHC-D is one of the few
clinics in the world using preservative-free antigens.)

ALF – (Autogenous Lymphocytic Factor)

Individualized autogenous vaccines are specially designed for
patients with immune system dysfunction.

Nutrition

Our dietitians offer rotation diet instruction for treatment of
food sensitivities, as well as recommendations for other
nutritionally related problems. Nutritional treatment may include
intravenous parenteral injections and oral supplementation as
needed. Our physicians specialize in manipulation of nutrients,
including total parenteral nutrients.

Physical
Therapy


The EHC-D’s licensed physical therapist provides a wide range of
musculo-skeletal programs individualized for the specific needs of
each patient.

Osteopathic Manipulation

This procedure, which optimizes musculo-skeletal function and
increases restricted range of motion, complements the physical
therapy process.

Chemical
Depuration Program
(Combining Heat Depuration Chambers and
Physical Therapy)


This outpatient means of treating toxic exposures is a
six-day-per-week, physician-supervised program consisting of dry
heat, exercise, massage, vitamin and mineral replacement,
administration of xenobiotic binding substances and monitoring of
toxin levels in blood and/or fat tissue.

Oxygen Therapy

A specialized technique of administering pure oxygen invigorates
the microcirculation, allowing for better tissue oxygenation, which
is especially helpful for treating hardening of the arteries and
blood vessel spasms.

Nutrient Therapy

This therapeutic process replenishes vital nutrients that are
essential for the successful function of immune and detoxification
mechanisms.

Psychological Support Services

Consultant psychologists offer individual and group therapy
services to patients. Periodic EHC-D support groups are also
available.

These are by no means experimental treatments.  All of the treatments are well documented in textbooks and
clinical case studies. Dr. Rea has published a 4-volume textbook with well
over 2000 patient case studies proving his treatments work. He is a
world-renowned expert on the treatment of Immune Related Disorders and his
textbooks are used in virtually every medical school in the country.

Even
before meeting with Dr. Rea, we had discovered several other MD’s who
were experimenting with similar treatment protocols with excellent
success. And, again, they are no more bizarre than “Horse Serum”. 
In fact, if one looks objectively at the strategies, many of these
“alternative treatments” have more basis in medical fact than the
treatments currently being espoused.

 

One example is a theory postulated by (Summarized from Dr. Hair Sharma,
M.D. in Freedom from Disease, Toronto, Ontario:Veda Publishing,
1993 which is summarized below:

Free
Radical Damage

In
this theory, the DNA in our cells can be altered or destroyed by reactive
substances in our bodies. When the destroyed DNA is a part of the immune
control function, it can result in a specific autoimmune disease.

Oxygen
outside our bodies can cause iron to rust and is necessary for paper to
burn. On the inside, it can be equally destructive. Free radicals are
particles that have an unstable molecular structure. They act as
scavengers in the body and rob electrons from other molecules to increase
their stability. The particles that are robbed don’t function as they
should and can be toxic. There are several types of free radicals. Some of
the most common have an oxygen base. For people with ITP, imagine that our
platelets are cooked by it. Free radicals build over time. They are a
natural byproduct of our metabolism and immune system functions. They are
a natural component of aging. Their production is hastened by
stress, pollution, fertilizers, pesticides, prescription drugs, alcohol,
electromagnetic radiation, etc.

Our
bodies have built in controls for free radicals and ways of changing them
into neutral substances. These detoxification mechanisms require specific
enzymes to make them function well. If our bodies do not have the vitamins
and minerals to make up the enzymes, or if the detoxification mechanism is
damaged, perhaps by free radicals, the result is a surplus of free
radicals and other toxic substances. This can also happen if our life
style and environment results in our having too many toxins for even a
good working system to neutralize.

The
excess free radicals and other noxious byproducts of a failed detox
process roam our bodies and attack our weakest links
. These weak
links may be due to genetics. They may be other parts of our immune system
that happen to be nearby. Depending on the DNA attacked, the electron
grabbing can cause an auto-immune disease.

Theoretically, if a surplus of free radicals is the
cause of the disease, reducing the amount of things that promote their
production (ex. stress), ingesting substances that reduce the number of
free radicals (ex. Vitamin C) and making sure our detoxification
mechanisms have sufficient nutrients (eating well) may be part of the
cure.

Here are additional documented citations from the book The Scientific
Basis for Selected Environmental Medicine Techniques4 by Dr.
Sherry Rogers, one of the world’s experts on Environmental Medicine. 

P, 115, According to 6/13/90 journal of AMA, “90% of physicians fail
to look for magnesium deficiency in patients so sick as to be hospitalized
and 54% of these patients and many of them died of the undiagnosed
deficiencies.  Thus it is
customary for doctors to be dangerously poor in nutritional biochemistry. 
It is not excusable nor is this a rational reason to reject those
patients are knowledgeable.” 

P, 116, Likewise, the U.S. Dept of Health and Human Services published
a report stating, “that only 2% of charts include information regarding
toxic exposures, duration of present employment and former occupation. 
As for reasonableness, this same government agency makes it
explicitly clear that the inclusion of environment history is the gold
standard of good medicine. An environmental history is a necessary part of
the diagnosis and subsequent treatment. Again, being customary to omit
environmental considerations does not excuse it and in no way should
exempt the patient from insurance coverage.” 
Agency for Toxic Substances and Disease Registry, Department of
Health and Human Services, Public Health Services, Atlanta, Ga. 
Obtaining an exposure history. 
AMERICAN FAMILY PHYSICIAN Sept 1, 1993; 483,483-491.

P, 116, “Furthermore, many patients have disease and symptoms that
resist diagnosis…they have consulted over a dozen certified specialists
and have everything that is reasonable and customary done and but did not
help them. The more difficult the medical problem, the more likely that
there is an environmental medical solution. If you have a medical problem
that is not customary, i.e. Aplastic Anemia, the more likely neither will
the treatment or solution is customary. 
Likewise, the more physicians a person has to consult, with no
answers, the more likely that the final solution will not be customary.
This is not a reason to penalize or discriminate against the patient who
has a difficult problem. 

P, 117, “The next term that is commonly used to deny payments is
calling the technique “unproven and experimental”. 
They used this to reject SDET (serial dilution end-point titration,
or simply titrated extracts).  There
are not studies to disprove SDET and it has been used for over a half of a
century and is currently used by over 2000 physicians (this was in 1994!). 
And there are no reports of adverse reactions, but there is a
plethora of articles substantiating its benefits and scientific merits.  

In her book, the Rebellious Body5, Janice Strubble Wittenberg states
that the immune system is made up of a vast network of interrelated organs
and biochemicals including the bone marrow (the fundamental organ
associated with Aplastic Anemia), lymphatic vessels, the spleen, thymus,
tonsils, lymph nodes, white blood cells, and other specialized cells found
in various tissues throughout the body…every aspect of one’s body is
influenced by and has influence on immune capability.” 
The EHCD treatment protocol is designed to treat the entire body
and to rebalance the immune system.  “The
greatest job of the immune system is its ability to perform the job of
destroying foreign substances before they cause harm to the body. 
Agents that could cause harm are found everywhere, in
everything…requiring the immune system to discreetly work to ward off
illnesses at all times.”  (Introductory
pages)

On Page 13, she states “ In the case of auto immunity, the immune
response goes into high gear and is unable to halt its protective
reactivity even when the threat is past.” 
(In Aplastic Anemia, the immune system is destroying the body’s
own cells.) Antibodies attack healthy parts of the body in the same way
they would invading bacteria or viruses…The body fails to return to a
normal state…healthy cells are attacked and destroyed. 
In a person with a healthy immune system, when intruders are
destroyed, the body sends out a signal to curtail its efforts. In an
unhealthy immune system, the body never receives the message.”

“When the immune system is impaired, the body has difficulty removing
toxic matters.” (The EHCD protocol including sauna, physical therapy and
rotational diet is specifically designed to remove toxic materials from
the body and it worked for me as it has for thousands of others). “When
nutrients are depleted (see my lab results), all systems stop functioning
effectively and the immune system is less capable of mustering its forces
to cope with damage. The major determinant of the ability to keep the
immune system healthy is your nutritional status. There are four factors
that can assist the immune function:

1.     
Heightening elimination pathways

2.     
Strengthening of organ function

3.     
Assisting overall detoxification

4.     
Ingestion of essential nutrients, antioxidants and carotine”

Ms. Wittenburg then cites a published article by Dr. Theresa Randolph
in further explaining what foods and what toxic agents can cause harm to
the immune system.  The entire
book is well documented and describes how the immune system and its
various organs function properly or malfunction when exposed to toxic
chemicals.

The fundamental EHCD strategy is to restore the immune system
through better nutrition and removal of toxins.

In his book “A Commotion in the Blood”, Stephen S. Stall states
“humans are endowed at birth with an enormously larger repertoire of
distinct antibody producing cells, warehoused as it were, in the lymph
nodes and spleen.  It is the
chance encounter with an invading microbe that will turn on or select the
appropriate antibody so that in a sense each bacteria picks its own
poison.” 

Dr Rea’s Incitant Testing is designed to identify the agents which
are causing a person’s body to react and in so doing, eliminate or
reduce the immune system’s reaction to the antibody as described on P,
12, of the EHCD Outpatient Manual7.  
P, 12, “Laboratory Testing helps the physician evaluate the
function of the immune system and the degree of the patient’s
sensitivity. 

Tests may include but are not limited to, RAST, IgE, IgC, total
complement, T and B lymphocytes (instrumental in Aplastic Anemia
diagnoses), and total eosionphils.” 
These tests and their results which are attached for your
information was instrumental in determining the chemical imbalances my
body has suffered from repeated exposures to environmental toxins,
processed foods and harmful drugs. 

I was then placed on a regimen of Physical Therapy, a Rotational
Diet designed to reduce exposure to harmful foods, and the inclusion of
nutritional supplements designed to rebalance my immune system and it has
worked!  I have more physical
stamina and energy than I have in well over two years. 
My blood pressure has returned to a normal state, my cholesterol
has been lowered and my ability to function has been greatly increased.

These are just a few examples of the citations in numerous books and
clinical articles that we can provide. 
We have also attached numerous articles describing the specific
treatments I received at the EHCD, and Doctor’s notes.

I have accumulated more information on this disease in the past year
than you will be able to read.  I
have been told by virtually every Medical Professional that I have met
that I know more about this disease than anyone they have encountered.
Other insurance companies pay for these treatments and you should also. 
I have an entire website dedicated to furthering this research and
continue to gather evidence supporting my position on a daily basis.

The treatments provided by the EHCD7, 8,9 are no less
experimental than the treatments you have already accepted. 
In fact, they have been in use for a longer period of time and are
far less toxic than drugs like Cyclosporine, Vioxx, Acyclovir, Prilosec,
Metronidazole, and others that you have readily accepted.11, 12
The side effects and contra-indications of these drugs are incredible
compared to the natural alternatives prescribed by Dr. Rea that has been
working in restoring my immune system.

My wife has now forwarded pages and pages of explanations and claim
disputes yet we continue to wait for reimbursement. We have not even
been reimbursed for normal blood transfusions, lab work and skin testing
that you have paid for in the past
. We will fight this as long as
necessary. We will not give up in frustration, which appears to be your
goal.  You have been
stalling and giving us the run around for well over three months on the
EHCD and other claims.
 

We are now being hounded by medical collection agencies for the first
time in our lives.  We have
spent over thirty years building an impeccable credit record that is now
in danger of impacting our entire life because you are dragging your feet
on payment of legitimate claims. We have been forced to sell our house,
sell off retirement funds and liquidate virtually all of our holdings in
an effort to keep up with payments.

I am in danger of dying from a chronic disease and the last thing my
wife and I need is more stress in our lives dealing with your tactics. We
intend to pursue this issue relentlessly and have now involved our
attorney, The Center for Patient Advocacy and will be contacting the State
Attorney General’s Office.  The
next step will be the media and we will not stop until the matter has been
resolved to our satisfaction.

Respectfully,

Bruce Lande

cc Patient Advocate Foundation

     Scott
Lickstein, Personal Attorney

     Lin Golash,
Syracuse Teacher’s Association

 



1eMedicine Journal, June 19 2001, Volume 2, Number
6

bullet

In
the US:
No
accurate prospective data are available regarding the incidence of
aplastic anemia in the US. Several retrospective studies suggest
that the incidence ranges from 0.6-6.1 per million, largely based on
data from retrospective reviews of death registries.

 

2 National
Organization for Rare Disorders, Inc. 
In about 50 percent of cases of Aplastic Anemia, the disease has no
apparent cause. Certain toxic agents that may cause the disorder include
inorganic arsenic and certain drugs such as phenylbutazone,
chloramphenicol, other antibiotics, azathioprine, carbamazepine, carbonic
anhydrase inhibitors, dapsone, ethosuximide, gluthethimide, gold
compounds, penicillamine, pentoxifylline, probenecid, quinacrine,
sulfonamides, sulfonylureas, trimethadione, and anticonvulsants. High
doses of radiation may also cause marrow failure but this is not usually
classified as aplastic anemia.



The symptoms of Aplastic Anemia are the result of the loss of primitive
cells (stem cells) in the bone marrow that are the precursors
(forerunners) of more mature blood cells. A majority of cases of aplastic
anemia appear to be caused by activation of the immune system with
secondary damage to the marrow.

 

Affected
Population



Aplastic Anemia is a rare bone marrow disorder that affects males and
females in equal numbers. This disorder affects approximately 1.5 to 2 in
1,000,000 people in the United States; approximately 500 to 1,000 new
cases are reported each year. Acquired Aplastic Anemia affects children
slightly less frequently than adults. However, children may also develop
the disease from the less frequent inherited causes of bone marrow
failure.

 

Medical
Care:

bullet

Transfusions

Patients with
aplastic anemia require transfusion support until the diagnosis is
established and specific therapy can be instituted. For patients in
whom marrow transplantation may be attempted, transfusions should be
used judiciously because minimally transfused subjects have achieved
superior therapeutic outcomes. It is important to avoid transfusions
from family members because of possible sensitization against
non-HLA tissue antigens of the donors. In considering blood bank
support, attempt to minimize the risk of cytomegalovirus infection.
If possible, the blood products should undergo leuko-poor reduction
to prevent alloimmunization and be irradiated for prevention of
third-party graft-versus-host disease in bone marrow transplant
candidates. Judicious use of blood products is essential, and
transfusion in conditions that are not life threatening should be
done in consultation with a physician experienced in the management
of aplastic anemia.

 

bullet

Treatment
of infections

Infections are
a major cause of mortality in these patients. The risk factors
include prolonged neutropenia and the indwelling catheters used for
specific therapy. Fungal infections, especially Aspergillus,
pose a major risk. Empirical antibiotic therapy should be broad
based with gram-negative and staphylococcal coverage, based on local
microbial sensitivities. Special consideration should be given to
include antipseudomonal coverage at initiation of treatment for
patients with febrile neutropenia and early introduction of
antifungal agents for those with persistent fever. Cytokine support
with granulocyte colony stimulating factor (G-CSF) and
granulocyte-macrophage colony stimulating factor (GM-CSF) may be
considered in refractory infections, though weighted against cost
and efficacy.

 

bullet

Bone
marrow transplantation

HLA-matched
sibling donor bone marrow transplantation (BMT) is the treatment of
choice for a patient with severe aplastic anemia in young patients
(controversial but generally accepted for age <60 years). The
conditioning regimen most often used includes a combination of
antithymocyte globulin (ATG), cyclosporine (CSA) and
cyclophosphamide. The addition of ATG and CSA to the conditioning
regimen has resulted in reduction of graft rejection. When radiation
was used as part of the conditioning regimen, a higher incidence of
chronic graft-versus-host disease and malignant disease was found.

Unrelated
donor BMT probably can only be justified if the donor is a full
match and has failed immunosuppressive therapy or as part of a
clinical trial. Early referral to a transplant center at diagnosis
is recommended in all younger patients, even if they lack a suitable
related donor.

 

bullet

Immunosuppressive
therapy

Immune
suppression as a treatment for aplastic anemia is especially useful
if a matched sibling donor for BMT is not available or if the
patient is older than 60 years. The various options include
combination therapy including ATG, CSA, and methylprednisolone, with
or without cytokine support.

The response,
unlike other autoimmune diseases, is slow and usually takes at least
4-12 weeks to show early improvement, and continues to improve only
slowly thereafter. Most patients improve and become
transfusion-independent, but many still have evidence of a
hypoproliferative bone marrow. Even though the initial response rate
is good, relapses are common and often-continued immune suppression
is needed. Rarely is a full hematological recovery seen, but most
patients improve to a functional hematological recovery that
obviates further transfusion support. Further, a 15-30% risk exists
of developing some form of clonal disease other than PNH, which may
be due to the inability of these therapies to completely correct
bone marrow function, the missed diagnosis of MDS, or the fact that
the stem cells under proliferative stress may be more prone to
mutation.

Preliminary
data suggested that high-dose cyclophosphamide may result in durable
remissions in some patients with aplastic anemia, but a recent
report suggests that rates of fungal infections may practically
limit this approach, and its use at present should be limited to
clinical trials.

Surgical
Care:
A
central venous catheter is required prior to immunosuppressive therapy or
BMT.

Consultations:
Hematologist
and/or bone marrow transplant specialist

Diet: The
diet for the patient with aplastic anemia who is neutropenic or on
immunosuppressive therapy should be carefully tailored to exclude raw
meats, dairy products or fruits and vegetables that are likely to be
colonized with bacteria, fungus, or molds. Further, a diet limiting salt
is recommended during therapy with steroids or cyclosporine.

Methylprednisolone –
Coadministration with digoxin may increase digitalis toxicity secondary to
hypokalemia; estrogens may increase levels of methylprednisolone;
phenobarbital, phenytoin and rifampin may decrease levels of
methylprednisolone (adjust dose); monitor patients for hypokalemia when
taking medication concurrently with diuretics

 

3 William Rea Biography

William
J. Rea, M.D
.
is a practicing thoracic and
cardiovascular surgeon with a passionate interest  in the
environmental aspects of health and disease. Founder of the
Environmental Health Center (EHC), Dr. Rea is currently
director of this highly specialized Dallas based medical
facility. The EHC also has a clinic in Chicago,
Illinois.

In 1988, Dr. Rea was named to the world’s first professorial
chair of environmental medicine at the Robens Institute of
Toxicology at the University of Surrey in Guildford, England. He was
also awarded the Jonathan Forman Gold Medal Award in 1987 and the
Herbert J. Rinkel Award in 1993, both by the American Academy of
Environmental Medicine, as well as named Outstanding Alumnus by
Otterbein College in 1991. He was also named to the Mountain Valley
Water Hall of Fame for work in the field of study of clean water
and, in 1995; he received the F.A.M.E. Award for pioneering work in
environmental and preventive medicine.

In 1997 he was named International Man of the Year. Dr. Rea was
at the University of Oklahoma Health Science Center College of
Public Health where he was adjunct professor. Author of the medical
textbooks, Chemical
Sensitivity
, Vol. 1-4, and co-author of Your
Home, Your Health and Well-Being
, Dr. Rea has published
more than 100 peer-reviewed research papers related to the topic of
thoracic and cardiovascular surgery as well that of environmental
medicine. 

Dr. Rea served on the board of directors of the
American Academy of Environmental Medicine and is presently the
president of the American Environmental Health Foundation. Dr. Rea previously
held the position of chief of surgery at Brookhaven Medical Center
and while serving on the faculty of the University of Texas Medical
School, he was chief of cardiovascular surgery at the Veteran’s
Hospital. Dr. Rea is a past president of the American Academy of
Environmental Medicine and the Pan American Allergy Society. He has
also served on the Science Advisory Board for the U.S. Environmental
Protection Agency, on the Research Committee for the American
Academy of Otolaryngic Allergy and on the Committee on Aspects of
Cardiovascular Endocrine and Autoimmune Diseases of the American
College of Allergists, Committee on Immunotoxicology for the Office
of Technology Assessment and on the panel on Chemical Sensitivity of
the National Academy of Sciences.

Dr. Rea is a fellow of the American College of Surgeons, the
American Academy of Environmental Medicine, the American College of
Allergists, the American College of Preventive Medicine and the
American College of Nutrition, and the Royal Society of Medicine. He
is currently working with the Gulf War Panel for Chemically Injured
Veterans.

Born in Jefferson, Ohio, Dr. Rea graduated from Otterbein College
in Westerville, Ohio, and Ohio State University College of Medicine
in Columbus, Ohio. He then completed a rotating internship at
Parkland Memorial Hospital in Dallas, Texas. He held a general
surgery residency from 1963-67 and a cardiovascular surgery
fellowship and residency from 1967-69 with The University of
Texas-Southwestern Medical School system, which includes Parkland
Memorial Hospital, Baylor Medical Center, Veterans Hospital and
Children’s Medical Center.

From 1984-85, Dr. Rea held the position of adjunct professor of
environmental sciences and mathematics at the University of Texas,
while from 1972-82; he acted as clinical associate professor of
thoracic surgery at The University of Texas Southwestern Medical
School. He has also served as chief of thoracic surgery at Veterans
Hospital and as adjunct professor of psychology and guest lecturer
at North Texas State University. Dr. Rea is currently affiliated
with Garland Community Hospital in Garland.

 

4 The Scientific Basis for Selected Environmental Medicine Techniques4
by Dr. Sherry Rogers, one of the world’s experts on Environmental
Medicine.  The book is called
published by SK Publishing Library of Congress 94-69079 published in 1994
ISBN 09618821-6-6.

5 The Rebellious Body, ISDN 0-306-45402-5 Janice Strubble Wittenberg,
R.N.  Includes documentation
and clinical case studies to substantiate her positions.

6 A Commotion in the Blood, Stephen S. Stall ISDN 0-8050-3796-9

7 EHCD Outpatient Information Manual Copyright 1984 William J. Rea,
M.D., F.A.C.S.; Mary L. Williams, M.L.T., Carol Burton, B.S., Lyn Dart,
R.D., Alfred Johnson, D.O. and Michael Farina, B.S. Additional
contributions by Gerald H. Ross, M.D., Ralph E. Smiley, M.D., Joel Butler,
PhD, Ervin J. Fen Yves, PhD, Bertie Griffiths, PhD, Vernon Scholes, Ph.D.,
Linda Carlisle, R.N., Carolyn Carlisle, M.A., Sue Herbig, R.N. and Teena
Petree, P.T.

8 Rotational diet first developed by Rinkel in 1934

9 eMedicine Journal,
June 19 2001, Volume 2, Number 6
Pathophysiology:
“In acquired aplastic anemia, clinical and laboratory observations
suggest that this is an autoimmune disease. The role of an immune
dysfunction was suggested in 1970, when autologous recovery was documented
in a patient with aplastic anemia who had failed to engraft after marrow
transplantation; Mathe proposed that the immunosuppressive regimen used
for conditioning promoted the return of normal marrow function.
Subsequently, numerous studies have shown that in approximately 70% of
patients with acquired aplastic anemia, immunosuppressive therapy improves
marrow function. Immunity is regulated genetically (by immune response
genes) and also influenced by environment (e.g., nutrition, aging,
previous exposure). Although the inciting antigens that breach immune
tolerance with subsequent autoimmunity are unknown, human leukocyte
antigen (HLA)-DR2 is over represented among European and American patients
with aplastic anemia.

An expanded population of cytotoxic T lymphocytes mediates suppression
of hematopoiesis likely: cluster of differentiation 8, HLA-DR+ (CTLs: CD8,
HLA-DR+), which are detectable in both the blood and bone marrow of
patients with aplastic anemia. These cells produce inhibitory cytokines,
such as gamma interferon and tumor necrosis factor, which are capable of
suppressing progenitor cell growth. These cytokines suppress hematopoiesis
by affecting the mitotic cycle and cell killing through induction
Fas-mediated apoptosis. It also has been shown that these cytokines induce
nitric oxide synthase and nitric oxide production by marrow cells, which
contributes to immune-mediated cytotoxicity and elimination of
hematopoietic cells.”

 

10The
Autoimmune Diseases


A Discussion of the Causes and
Treatments of Autoimune Diseases

InFocus

Article

    This is a selected article from one of
the past issues of "InFocus" Newsletter. The American
Autoimmune Related Diseases Association, Inc. publishes
"InFocus" to provide its members and subscribers with
current information about autoimmune diseases and related topics as
well as timely reports about AARDA.

    "InFocus"
is published four times per year.

    Subscriptions
are available for a donation of $24.00 (U.S) or any amount. To
receive a copy of the current newsletter plus four more issues click
on the subscribe button.

    The
American Autoimmune Related Diseases Association, Inc. (AARDA) is a
Tax-exempt 501 C (3) qualifying charitable organization. To find out
more, please click on "About
AARDA."

 

–By Noel
R. Rose, M.D., Ph.D., Chairperson, AARDA’s Scientific Advisory
Board; Professor of Pathology and of Molecular Microbiology and
Immunology and Director of Autoimmune Research Center, The Johns
Hopkins University

Autoimmune disease defined

The basic definition of an autoimmune disease is a disorder caused
by an autoimmune response, i.e., an immune response directed to
something in the body of the patient. Since autoimmunity can affect
any organ in the body (including brain, skin, kidney, lungs, liver,
heart, and thyroid), the clinical expression of the disease depends
upon the site affected. In our system of highly compartmentalized
medicine, physicians may care for patients with autoimmune disease
in virtually any medical specialty.

For many
years, the medical establishment was skeptical of the existence of
autoimmunity since it seemed to defy common sense. Why would a
person develop an immune response to himself rather than to an
invading germ? When we realize that the immune response is a
powerful and complex biological reaction, however, we can understand
that, on occasion, the reaction can misfire. These misfirings of the
immune system are the reason that autoimmune diseases occur.
Sometimes autoimmunity can be the initiating cause of the disease.
In other cases, autoimmunity can contribute to, or exaggerate, a
disease caused by something else. The presence of an autoimmune
response is signaled by the appearance of autoantibody in the
circulation, and so the demonstration of a particular autoantibody
usually constitutes the path to recognize an autoimmune disease.

Multiple causes: genetic

What could cause the immune system to misfire in such a harmful
manner? Part of the answer is genetic. All of the autoimmune
diseases show evidence of a genetic predisposition. No single gene
by itself causes an autoimmune disease; instead, a coalescence of
several genes in certain individuals, in the aggregate, heightens
significantly the overall possibility of developing an autoimmune
disease. Some of

These
genes may be specific for a certain disease, but others predispose
to autoimmunity in general.

10 1eMedicine
Journal
,
June 19 2001, Volume 2, Number 6

 Mortality/Morbidity: The major causes of morbidity and mortality from
aplastic anemia include infection and bleeding. Patients who undergo bone
marrow transplantation have additional issues related to conditioning
regimen toxicity and graft-versus-host disease. With immunosuppression,
approximately one third of patients do not respond, and for the responders
risks exist of relapse and late onset clonal disease such as paroxysmal
nocturnal hemoglobinuria (PNH), myelodysplastic syndrome (MDS), and
leukemia.

11  1eMedicine Journal,
June 19 2001, Volume 2, Number 6

Causes:

bullet

Congenital/inherited
(20%)

 

 

 

bullet

Patients
usually have dysmorphic features or physical stigmata. Occasionally,
marrow failure may be the initial presenting feature.

 

bullet

Fanconi
anemia

 

 

 

bullet

Dyskeratosis
congenita

 

 

 

bullet

Cartilage
hair hypoplasia

 

 

 

bullet

Pearson
syndrome

 

 

 

bullet

Amegakaryocytic
thrombocytopenia (TAR syndrome)

 

 

 

bullet

Shwachman-Diamond
syndrome

 

 

 

bullet

Dubowitz
syndrome

 

 

 

bullet

Diamond-Blackfan
syndrome

 

 

 

bullet

Familial
aplastic anemia

 

bullet

Acquired
(80%)

 

 

 

bullet

Idiopathic

 

 

 

bullet

Infectious
causes such as hepatitis viruses, Ebstein-Barr virus (EBV), HIV,
parvovirus, and mycobacterial infections

 

 

 

bullet

Toxic
exposure to radiation and chemicals such as benzene

 

 

 

bullet

Drugs
such as chloramphenicol, phenylbutazone, and gold may cause aplasia
of the marrow. The immune mechanism does not explain the marrow
failure in idiosyncratic drug reactions. In such cases direct
toxicity may occur, perhaps due to genetically determined
differences in metabolic detoxification pathways; for example, the
null phenotype of certain glutathione transferases is
overrepresented among patients with aplastic anemia.

 

 

 

bullet

Paroxysmal
nocturnal hemoglobinuria (PNH) is caused by an acquired genetic
defect limited to the stem cell compartment affecting the PIGA
gene. The PIGA gene mutations render cells of hematopoietic
origin sensitive to increased complement lysis. Approximately 20% of
patients with aplastic anemia have evidence of PNH at presentation
as detected by flow cytometry. Furthermore, patients who respond
following immunosuppressive therapy frequently recover with clonal
hematopiesis and PNH.

 

 

 

bullet

Transfusional
graft-versus-host disease

 

 

 

bullet

Orthotopic
liver transplantation for fulminant hepatitis

 

 

 

bullet

Pregnancy

 

 

 

bullet

Eosinophilic
fascitis

 

12 Dr. Young is the recognized expert on Aplastic Anemia at the NIH in
Bethesda. 

Acquired
Aplastic Anaemia



Dr Neal S. Young


National
Institutes of Health,

Bethesda,

Maryland, USA.

 

 

Aplastic anemia also
was recognized as a rare complication of medical drug use: A virtual
epidemic of marrow failure appeared to follow the introduction of the
antibiotic chloramphenicol in the 1960s. From the clinical associations
with chemicals and drugs and the increasingly familiar experience of
marrow depression caused by the purposeful use of cytotoxic drugs in
cancer chemotherapy, direct toxic effects were assumed to explain the
disease. More recently, an active role of the immune system in marrow
destruction has been recognized. In 1999, most patients can be treated
effectively either by replacement of the marrow through stem cell
transplantation or by drugs that suppress immune system function.