A warm and sincere thank you to the patients, families and members of the Lyme Community who came to NJ to attend the LymeRights Protest on Wednesday May 7th to demand Congressman Frank Pallone schedule our Lyme Bill, HR 741 for a Hearing. Thank you to the thousands of callers across America who demanded to be heard!
We know it was a hardship for the many that came. For those who could not come, know we were there for you! We felt your spirit and presence. It was a sight to be proud of, over 100 people lining both sides of Broadway with signs, chanting and conviction!
Unfortunately, Mr Pallone appeared to have already written a press release with his decision. He feels that there is no reason to hold a hearing on the legislation until after the IDSA treatment guidelines have been reviewed. That's right, he thinks that we do not need research into a reliable test, research into more effective treatments, or any education or prevention efforts.
Mr. Pallone does not consider Lyme patients and our Bill, HR 741 a priority. Despite Attorney General Richard Blumenthal's findings of bias and conflicts of interest, he continues to bow to the pressure of the Infectious Diseases Society of America. Unacceptable!!
Together we are a strong voice that Congress will hear! Our lives will not be ruled and destroyed by 14 members of the IDSA whose corruption and ulterior motives are riddled with conflicts of interest.
I urge each and every one of you to read the letter Behind the Scenes of the Pallone Decision, written by Pat Smith, President of the Lyme Disease Association (attached). Keep those calls going to Pallone's office and tell him you want the Lyme Bill brought to a hearing, but also let him know you read ``The Letter'' and you know what is going on behind the scenes, and we will not be stopped!! We will continue to open the eyes not only of Pallone's constituents but people across the nation.
This is not the end; we must all continue to call Mr Pallone's office and Mr Kennedy's office until we are heard.
Thank you from all of us for your passion and your support!
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
Posts: 13 | Registered: May 2005
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bettyg
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posted
....thanks for posting this! and breaking some of it up!! lol
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bettyg
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posted
up for easier reading since it's broken up vs. ellen's duplicate posting ...
shown in long continuous block that we neuro lymies can't comprehend or read....
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