By
Raphael
Stricker, MD
President, ILADS
August
28, 2007
The Honorable Jon S. Corzine
Chairman
Health and Human Services Committee
National Governors Association
444 North Capitol Street, NW, Suite 267
Washington, DC 20001
Dear
Governor Corzine,
I am writing in response to the
letter of August 7 from Dr. Henry Masur, President of the
Infectious Diseases Society of America (IDSA). That letter urged
you and other governors to turn your backs on patients with Lyme
disease. I would like to offer a more positive approach from my
organization, the International Lyme and Associated Diseases
Society (ILADS).
First, however, I would like to
extend ILADS' support in the battle against Lyme disease to your
state of New Jersey, which as you know has one of the highest
rates of Lyme disease in the country. Lyme disease affects as
many as 250,000 people per year in the United States, based on
under-reporting statistics from the Centers for Disease Control
and Prevention (CDC) and data from state health departments. I
hope that the former governor of New Jersey is doing well in her
fight against this insidious tick-borne illness.
Dr. Masur states correctly that
he represents a group of 8,000 doctors who specialize in
infectious diseases. However, only a small fraction of that
group knows anything about the diagnosis and treatment of
tick-borne diseases, including Lyme disease. Unfortunately that
small faction has hijacked the IDSA policy on Lyme disease and
created treatment guidelines that are so restrictive that the
Attorney General of Connecticut is currently investigating
potential antitrust violations and restraint of trade arising
from the exclusionary process that led to the IDSA guidelines
formulation.
In contrast, ILADS is an
international organization of healthcare providers who
specialize in the treatment of Lyme disease and associated
tick-borne disorders. The members of our multidisciplinary
society care for some 50,000-100,000 patients with tick-borne
diseases, and we have published evidence-based guidelines for
the diagnosis and treatment of Lyme disease (available at
www.ilads.org).
Our guidelines are flexible and inclusive. They allow
practitioners to treat patients in a more pragmatic fashion,
especially if those patients are suffering from chronic Lyme
disease.
A major problem is that Dr. Masur and
IDSA refuse to acknowledge the existence of chronic Lyme
disease, stating that there is "no convincing published data" to
support the existence of this serious chronic illness. IDSA has
repeated this mantra despite evidence from more than 19,000
peer-reviewed scientific articles that chronic Lyme disease does
in fact exist. The problem is that IDSA does not accept this
evidence and buries its head in the sand every time the evidence
is brought up. In fact, IDSA refused to meet with ILADS to
discuss our concerns before the IDSA guidelines were adopted. It
is certainly hard to convince an organization that doesn’t want
to listen to the opposite argument.
Dr. Masur employs two lines of
reasoning to discredit treatment with longer courses of
antibiotics for patients with chronic Lyme disease: First he
states that "carefully designed and conducted studies of Lyme
disease treatments have failed to demonstrate benefit from
prolonged antibiotic therapy". This statement ignores the fact
that there have been only two published studies that fit this
description, and the results were mixed. A third study from
Columbia University sponsored by the National Institutes of
Health is currently in press, and it shows benefit of longer
treatment for patients with persistent neurologic symptoms due
to chronic Lyme disease. Thus Dr. Masur's statement is both
inaccurate and out of date.
Dr. Masur also makes the point in
bold letters that "long-term antibiotic therapy may be
dangerous, leading to potentially fatal infections in the
bloodstream as a result of intravenous treatment". What he fails
to tell you is that long-term antibiotic treatment is used
routinely in patients with serious infectious diseases, such as
the case of Andrew Speaker, the attorney with resistant
tuberculosis who led the CDC on a global chase before he was
quarantined and treated for his disease. Nobody would argue that
Mr. Speaker should not receive the full course of antibiotic
treatment necessary to eradicate his infection (up to two years
of therapy). However when it comes to Lyme disease, such
treatment is branded as "dangerous", despite the fact
that antibiotics are generally well tolerated by patients and
regarded as safe by the Food and Drug Administration.
And why does IDSA consider this
treatment dangerous? Because they refuse to look at the facts.
For example, a homecare company with extensive experience in
treating patients with intravenous antibiotics for chronic Lyme
disease submitted a study to IDSA for presentation at their
annual meeting. The study showed that in patients who received
intravenous antibiotic treatment for an average of four months,
the mortality rate was zero, and the rate of side effects was
less than 1%. The IDSA response to this report? They rejected
the study for presentation and refused to look at the data. Once
again, there is no convincing an organization that refuses to
listen to the opposite argument. It is particularly sad to see
that the sources cited at the end of Dr. Masur's letter in
support of his views are not articles from the peer-reviewed
medical literature but rather misleading reports from Forbes
Magazine, the Washington Post and Newsday.
ILADS urges the governors of all
states to support federal and state legislation intended to
protect doctors who specialize in treating Lyme disease against
the misleading and uninformed views of IDSA. ILADS urges you to
support adequate treatment for patients suffering from chronic
Lyme disease, and we urge you to consider the research
information that has been suppressed and ignored by IDSA. If we
continue to ignore this information, the Lyme epidemic will
continue to spread with no end in sight.
Governor Corzine, August 28, 2007,
marks the 44th aniversary of the famous "I have a dream" speech
by Rev. Martin Luther King, Jr. The members of ILADS and the
Lyme community have a dream, and it is not very different from
Dr. King's. Our dream is to see patients with chronic Lyme
disease treated with dignity and respect by the entire medical
community, so that informed physicians can treat those patients
in a caring and compassionate manner without fear of
discrimination, derision and figurative shotgun blasts from
medical boards and medical societies. This is our simple dream,
and I urge the governors of our nation to help us make this
dream come true.
Sincerely,
Raphael Stricker, MD
President, ILADS
cc: President George W. Bush
Governor Arnold Schwartzenegger
Governor Mitt Romney
Senator John McCain
Mayor Rudolph Giuliani
Senator Hillary Rodham Clinton
Senator Barack Obama
Senator John
Edwards
Secretary
Mike Leavitt
Matt Salo, HHS Committee Director, NGA
Kathleen
Nolan, Health Division Director, NGA
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