Commentary on Congressman Pallone's Position on Lyme Bill
Written By: Pat Smith, President LDA
May 2008
Behind the Scenes of the Pallone Decision:
Congressman Frank Pallone Prevents Patients from Receiving Lyme
Treatment, Rubber Stamps IDSA, Excludes Patients
Dear Lyme Community,
I apologize in advance for the length of this letter, but you need to
understand what is happening to you and why.
Last night, Congressman Christopher Smith, bill sponsor, and a friend
and leader to the Lyme community, called me to provide words of
encouragement after a very discouraging day. He told me to tell you
how sorry he is for everyone suffering out there and for what happened
that day and he asked that I tell you that he is "outraged" at this
bill decision. He said we must not give up, what we are doing is right
and just, and that he will never give up until this bill is passed, a
bill which he feels has the ability to go a long way to melding
research dollars and policy for Lyme disease. He is a bright light in
a world filled with those who lack substance and conscience.
What follows is the reason for his message. In an act reminiscent of
the ones IDSA has been rebuked for by Attorney General Blumenthal of
Connecticut, Congressman Frank Pallone, House Health Subcommittee
Chair, rubber stamped IDSA and its guidelines.
Shocked and saddened are two words that come to mind to describe how I
feel about what occurred yesterday in my own state, my own county.
The Chair of the very committee in the House of Representatives that
is charged with reviewing bills which affect the health of people
across this country today took an unprecedented step--he capitulated to
the powerful Infectious Diseases Society of America (IDSA). The IDSA
was under investigation by the Attorney General of Connecticut for a
year and a half, and it has been forced to scrutinize its Lyme
guidelines under the oversight of a specialist in conflicts of interest.
Rather than own up to the misconduct of its members, the IDSA is
publicly denying culpability in the matter. Rational people must
examine why a Society would settle if there were nothing to the AGs
allegations as this powerful Society claims. The Attorney General
found significant conflicts of interests for the panel member of the
guidelines, bias in the selection of participants, suppression of
scientific evidence, blocking of divergent viewpoints and foreclosure
of treatment options for patients. These are the types of findings
that a responsible medical society would take seriously and would
launch an internal investigation into the guidelines panel.
Rational people must also examine why Congressman Frank Pallone would
chose to endorse IDSA over patients nationwide, patients in NJ, and
his own constituents. Mr. Pallone has chosen no treatment for chronic
Lyme patients, no alternative treatments and no supplements. This is
the IDSA philosophy, the one whose development was investigated, whose
development was challenged, whose philosophy development was found by
the Attorney General to be riddled with conflicts of interest and
exclusionary conduct. Yet yesterday, during the protest outside his
Long Branch office, Mr. Pallone issued a press release saying he would
not post the Lyme bill until the IDSA convenes its new guidelines'
panel and issues a decision. This panel is part of the settlement
which was forced upon the IDSA by process and by threat of legal
action by the AG. After the new panel convenes and deliberates, Mr.
Pallone has given IDSA carte blanche to make its recommendations to
Congress about the Lyme bill, a bill which does not relate directly to
treatment but relates to monies for much needed research and a
much-needed voice for Lyme patients and treating physicians. What does
this mean to patients? He has knowingly placed the fox in charge of
the hen house, a fox already caught with chicken feathers dangling
from his mouth.
One might also wonder why IDSA was in DC on Friday after the AG
settlement with a lobbyist, their CEO, their lawyer and a new man on
their team, Dr Phillip Baker. Dr. Baker is the former NIH Lyme Disease
Program Officer on whose shift the Klempner study was approved,
terminated early, and subsequently touted as the kiss of death for all
extended antibiotic treatment for Lyme patients, although the
conclusions drawn by the authors were nothing more than a sham attempt
to halt treatment for patients. At a meeting I attended related to the
Klempner study, Dr. Baker allowed researchers who were anti chronic
Lyme to publicly trash treating physicians, researchers and even a
patient who was present, all in the name of science. It was so bad, I
wrote a letter to him when I arrived home expressing my horror at how
unprofessionally this government-sponsored meeting was run.
Industry interests continue to drive government. A primary example of
this "revolving door" between industry and government officials is
demonstrated by the fact that Dr. Baker is now advocating for the
IDSA. Given Baker's affiliation with the commercial interests of a
medical society, it is now clear that there never was anyone involved
in that Klempner study that viewed his job as protecting patients or
the public health.
How does this relate to what happened in NJ today? What we have here
is a cartel of vested interest masquerading under the banner of
science. This is not about patients, it is not about the greater
good, it is about greed. Patient health has been sacrificed by IDSA to
pave the way for those who hold patents, those who have an interest in
Lyme testing and vaccines, and those who have a consulting
relationship with insurance companies. Dr. Baker's now public
alignment with the commercial interests of the IDSA, and now it would
seem, patients' own elected representative's alignment, show how
powerful commercial interests in medicine can drive healthcare and
exclude the interests of patients, entirely.
We understand that the IDSA went to Washington the very day after the
Attorney General announced its findings of conflicts of interests,
suppression of scientific evidence, and denial of treatment options
for patients, and met with Mr. Pallone's Committee Members. What Mr.
Pallone has done is tell Lyme patients that their ability to have
research hinges on the decision of a private medical society that has
commercial interests in the results and that has been under
investigation for allowing its panel of researchers with extensive
commercial interests to corrupt its guidelines' panel. Essentially,
he is delegating public policy decision to a medical specialty society
whose guidelines are under scrutiny and that has evidenced a profound
lack of accountability and responsibility in policing the rampant
conflicts of interests of its panel members.
Yesterday, patients in wheel chairs, and IV drips, and mothers whose
children are out of school for years peacefully picketed Congressman
Pallone's office and carried signs and did chants at a protest
organized by the grass roots Lyme Rights Group. Reporters and radio
media attended and many interviews were conducted. Suddenly one
reporter on some silent cue left the patients to rush inside to pick
up a statement issued by Mr. Pallone's office. No one else was then
allowed to have the statement. I asked the reporter if I could borrow
it, and I read to a stunned crowd the news that essentially Pallone
supports and endorses the IDSA. I requested from his office a copy of
the release. They refused to provide it, telling me it was available
online. Obviously I had no access and again requested the document.
They told me they were not authorized to give me the document. But you
gave it to the reporter I said, well, they replied, that was
authorized. I reiterated, so the Congressman issued a public document
but would only provide it to a reporter.wouldn't even provide it to a
constituent who was right there. Silence followed.
While this transpired, that constituent of his was trying without
success to gain an appointment with Mr. Pallone, a process that began
months ago when Congress was on break. They refused then and now to
grant her a meeting. She asked what she could do to get this meeting
as her nephew is in a wheel chair due to Lyme. They could offer no
insights, so I suggested she join the IDSA. It seems that one must be
wealthy, powerful, and being investigated to gain the attention of Mr.
Pallone.
Most Lyme patients do not fit those categories. However patients have
something which IDSA does not have, they have numbers, commitment, no
vested interest to get in the way, and they now have a large combined
voice which stretches across this great country of ours. It is now
obvious to all that this voice must be raised loudly and often in DC,
NJ, CA, CT, MN, NY, PA, TX - every state of the union. All of us
nationwide need to start in NJ today. We need to be respectful, we
need to be angry, we need to be unrelenting in our quest to dismantle
this amoral cartel. We start by calling, faxing, visiting, emailing
Congressman Pallone's DC office. We must be relentless. We must let
them know that patients are out here. Patients will not tolerate being
ignored. Patients will not rest until Mr. Pallone puts their health
above moneyed interest. No stone can be left unturned.
If we allow IDSA to manipulate us through its representative in
Congress (Mr. Pallone), in a year we will find ourselves in an
untenable position. Congress will not only have turned its back on us
entirely, but the IDSA will get a bill of its choice, a political plum
that they have "earned" in some manner which we have yet to uncover,
but we will. Meantime, tens of thousands more people will become sick
and tens of thousands of those already sick will be further banished
to obscurity as they await their death sentence without treatment.
This message is long, but you need to understand, your plight as a
Lyme patient has now been placed in jeopardy again with a casual but
deliberate action taken by Mr. Pallone to revoke any rights you may
have had to treatment. The time for action is today, tomorrow and all
the tomorrows to come until we find out what is really behind this
great Lyme cover-up that denies you, the patient, a basic human right
- the right to be treated for your disease.
Pat Smith President LDA
lymediseaseassociation.org