Post by itsybitsyone on May 9, 2008 6:44:06 GMT -8
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
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
