SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
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
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks for posting this and thanks to Pat for her tireless efforts and a well written description of events.
Can someone tell us exactly what Baker's job is now with the IDSA? I am not at all surprised by his new location, as it was clear all along that he was another McSweegan.
If this bill is rewritten and then brought to a vote with this kind of IDSA influence, there will be a heckuva a lot of money going into the pockets of people with IDSA connections. It is only safe to pass this bill if the NIH mends its ways and there are safeguards to ensure fair distribution of the research money.
Politics sure stinks, doesn't it. Medicine has gotten pretty smelly too.
Posts: 8430 | From Not available | Registered: Oct 2000
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I am so sick of all the political crap....Canada is certainly following the political direction of the USA and the IDSA. What is going on? If I didn't have lyme, I would never have believed that this is happening/could happen. (I am a US citizen, now in Canada.)
Isn't this something? Oh dear. So sorry. So sad.
Posts: 190 | From BC Canada | Registered: Jul 2004
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
when i try to explain the politics behind why i had undiagnosed Lyme for fifteen years, people just look at me like I'm a paranoid freak.
This is all so perverse that healthy people can't even fathom it.
Posts: 1173 | From USA | Registered: Nov 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thank you for posting this.
I am so mad after reading this, I don't know what to do with myself!
So much for a congressman upholding our country's laws and rights of it's citizens..what a joke!
Posts: 6638 | From Michigan | Registered: Jun 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Does someone know the phone number, e-mail address, etc. to Pallone's office?
My brain isn't capable of searching right now.
Maybe we can start a tally of calls or letters sent.
I am fully prepared to be the biggest pain in the rear end these folks have ever seen.
How do they sleep at night?
I've always known greed to be evil.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
The above does not nullify A.G. Blumenthal's investigation findings/requirements of the IDSA does it?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thank you to Pat Smith, the attorney general and everyone involved for all their hard work!!! What we are going through is nothing less than a tragedy and a travesty.
We need to stay noisy. Tell everyone. Get everyone involved in this - after all, it will affect everyone.
BTW, if you google for Phillip Baker Klempner, it brings up a biowarfare background.
[ 09. May 2008, 03:20 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I appreciate everyone's hard work to get the message out.
I just don't believe that a change is going to come for people with Lyme any time soon.
The country is run by a bunch of psychos who have no consideration or compassion for people's suffering.
We don't even have health care in general for the citizens of this country who pay taxes.
People just assume that health care is something for people who have jobs. Why is health care linked to employment? Why do people think this is normal?
Health care is a human right - not a privilege!
There's a reason why we are being ignored & disenfranchised. It's about more then just money...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks Scott for posting this message.
It wouldn't hurt my feelings if folks wanted to continue calling Pallone's office and asking WHAT ARE WE SUPPOSE TO DO for treatment for the next year?
Ask them ... haven't we waited and suffered LONG ENOUGH?
I think every time we can... we should be picking up the phone and calling THEM for answers to our health care problems. Otherwise... out of site... out of mind.
I know things are going on behind the scenes and plans to counter this blow are being made.
But in the meantime...
Call, email, fax daily if you want to. I will be doing it.
They WILL soon learn that taking the side of evil is NOT acceptable.
Tell them you have to drive hours to find medical care.
Tell them your children are too sick to go to school today... and ask if they know a good babysitter who can come by today ... so you can get to the store for food.
Tell them you can't work.
Tell them your dog is sick.
Tell them you can't afford your meds.
Call, call, call. Make it a daily habit.
If they can't help us when we are trying to take care of ourselves through proper channels...
Let them know the consequences. Let them know what YOU live with every day.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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bettyg
Unregistered
posted
Steve, will you edit and add to top of your 1st post; 1st line; BettyG broke this up for neuro lymies; her version is at the END starting 5-9-08, 106 am~ thanks Steve!! ********************************************
The Lyme & Tick-Borne Diseases Research Center at Columbia University is now open! Thank you everyone for making it happen!
Pat Smith President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 Toll free info line 732-938-7215 (F) LymeDiseaseAssociation.org
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. [Pat's emphasize, not Betty's!]
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, 5-7-08, 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 and 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. NOTE: PAT'S EMPHASIS!!
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.
KUDOS Pat Smith for a very powerful letter and informing us all of EVERYTHING that transpired at the protest! I had wondered when you were notified by Pallone of his decision!! Now we all know!
Pat, thank you for your ENDLESS thousands of hours you spend helping the ENTIRE LYME COMMUNITIY!
We appreciate everything you try to do, and so glad you do NOT have neuro lyme mind like us to organize VERY EFFECTIVELY what you have done to date!
This is a schedule of their last year's hearings (2007), to get an idea of what they do legislatively:
June 15, 2007, Hearing on H.R. 1424, the Paul Wellstone Mental Health and Addiction Equity Act of 2007
June 12, 2007, Hearing on Discussion Drafts Concerning Prescription Drug User Fee Act Reauthorization, Medical Device User Fee and Modernization Act Reauthorization, Drug Safety, and Certain Pediatric Pharmaceutical and Device Legislation
June 7, 2007, Hearing on H.R. 1328, the Indian Health Care Improvement Act Amendments of 2007
May 22, 2007, Hearing on Programs Affecting Safety and Innovation in Pediatric Therapies
May 16, 2007, Hearing on Reauthorization of the Medical Device User Fee and Modernization Act
May 15, 2007, Hearing on Medicare Savings Plans and Low Income Subsidy: Keeping Medicare's Promise for Seniors and People with Disabilities
May 9, 2007, Hearing on Assessing the Safety of Our Nation's Drug Supply
May 2, 2007, Hearing on Assessing the Impact of a Safe and Equitable Biosimilar Policy in the U.S.
May 1, 2007, Hearing on Heart Disease Education, Analysis Research, and Treatment for Women Act
May 1, 2007, Hearing on H.R. 20, the Melanie Blocker-Stokes Postpartum Depression and Care Act
April 25, 2007, Hearing on Living Without Health Insurance: Why Every American Needs Coverage
April 18, 2007, Hearing on Medicare Program Efficiency
April 17, 2007, Hearing on Reauthorization of the Prescription Drug User Fee Act
March 27, 2007, Hearing on Insuring Bright Futures: Improving Access to Dental Care and Providing a Healthy Start for Children
March 8, 2007, Hearing on H.R. 493, the Genetic Information Nondiscrimination Act of 2007
March 6, 2007, Hearing on Exploring Options for Improving the Medicare Physician Payment System
February 14, 2007, Hearing on Covering the Uninsured through the Eyes of a Child
[ 09. May 2008, 09:17 AM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Just a little something I've been wondering......
Doesn't the Chairman of the Committee have any influence over the Chairman of the Subcommittee?
I realize that there is a reason for the "Sub"committee, but sometimes (in business) those in positions of responsibility are quite surprised by the actions of their subordinates.
Is that not the way our government works, do we just get slapped down and redirected if we try to address the the apparent IDSA influence in the refusal of the Subcommittee to schedule HR 741?
Perhaps the Committee Chair can step in if there is deviousness & impropriety occurring?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
The Chairman of the Energy and Commerce Committee is John Dingell,
notice in the above listing ofthe Health Committee, that John Dingell (last name on the list) is an "ex officio" member. I am going to guess that is a because he is Chairman of the E & C Committee.
Whatever, he probably (my guess, here) is aware of what happened in the meeting, and thus, probably, has gone along with it, in my opinion.
Here is the website for the Committee
A MESSAGE FROM THE HONORABLE JOHN D. DINGELL, CHAIRMAN COMMITTEE ON ENERGY AND COMMERCE
"Congressman John D. Dingell represents Michigan's 15th Congressional District and is the Chairman of the Committee on Energy and Commerce, one of five `exclusive' committees in the U.S. House.
He is also the longest serving current Member of the House and second longest serving Member in our nation's history. Dingell serves the people of Monroe County and parts of Wayne and Washtenaw Counties."
These are the subcommittees on the Energy and Commerce Committee in the House:
Commerce, Trade and Consumer Protection
Energy and Air Quality
Environment and Hazardous Materials
Health
Oversight and Investigations
Telecommunications and the Internet -------------------------------- Comment: Committee on oversight and investigations? Are they going to investigate themselves?
Northstar
[ 09. May 2008, 10:34 AM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Can Blumenthal present his findings to Pallone?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
posted
Doesn't ANYbody have any contacts in the media to try to get this investigated? This is an outrage & should be EXposed!
Posts: 81 | From Iowa | Registered: May 2007
| IP: Logged |
posted
We need to try to find a more public forum. My husband suggested trying to reach "60 Minutes". But I think we should also flood our 3 presidential candidates with a plea to expand their health care discussions beyond insurance coverage to corruption in the health care industry! The NY Times just reported on May 6th that the committee from the American Psychiatric Association charged with updating the DSM Handbook is mired in conflict-of-interest.
With all that has transpired in recent days, the time is ripe to make this a national issue! But we need to tag onto other atrocities such as the Psychiatric gang in order to appeal to a broader audience. If this is happening in these two organizations, it is obviously happening in others - this impacts EVERYONE!
There is more interest in this preidential campaign than any I ever remember. It is even affecting the ratings of popular TV shows. While everyone is listening, let's get our candidates to bring this out. My vote will go to the one who confronts it and comes up with a pledge and plan to fix it!
I know they can be contacted by email, but I am also going to try by phone - headquarters. If anyone knows of other ways to contact, will you share that? If anyone is living in the states with upcoming primaries, can you try to find a way to get questions regarding this onto the Q & A agendas?
All the pieces are there. We need to assemble, aim and fire!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
If Dingell IS aware, is HE in IDSA'a pocket too?
Can we link any dirt anywhere?
I like the idea of trying to get guideline corruption into the presidential campaign. Talk about media exposure.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Can Blumenthal talk to Pallone? or can he INCLUDE him in his investigation for his seeming alignment with them?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
bettyg
Unregistered
posted
quoting LYMEOUT...
If anyone knows of other ways to contact, will you share that?
If anyone is living in the states with upcoming primaries, can you try to find a way to get questions regarding this onto the Q & A agendas?
All the pieces are there. We need to assemble, aim and fire...
lymeout, you hit it on the nail; ALL STATES STILL LEFT TO DO PRIMARIES/CAUCUSES .... this is your time to hit all 3 pres. candidates about the wrong-doings going on here!
type up your stories, carry them to meetings where they are going to attend! Knowing you can NOT get to them personally, ask to speak to their DC OFFICE REP, and GIVE THAT PERSON YOUR LETTERS!
of course, SOUND OFF if you get the chance each and every time.
former bill clinton spoke; took NO q/a afterwards but shook hands with those on stage w/him.
we got tired applauding, and when silence hit, i yelled out a THANK YOU to him for hillary signing on as co-sponsor of our lyme disease bill and then he talked about it for 1-2 minutes and then STEM CELL research! i was the only one who got to speak 1 on 1 to him in the crowd!
BE PREPARED!! have your thoughts written down; i didn't but they were in my mind!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm glad you brought that up Betty!
Did BOTH Clinton AND Obama sign on as co-sponsors?
If they did, perhaps we can get people to yell out "Thank you for signing on as co-sponsor for the Lyme Disease Research Bill" wherever they go & get them to talk about it.
Maybe it will stick out in their minds, and the minds of others, as something they did that "the people" thought was important.
We can try the same tact when the winner faces off against the Republican candidate.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Yes, they both signed on as co-sponsors awhile back, so they are both definitely on our side. We all need to write letters to them, make sure they are fully aware of what is going on with the IDSA settlement and how Pallone is allowing lobbyists to influence him and keep the bill from going through - I know especially Obama has been making a point about not letting lobbyists come before the people, so he might be our best bet. We need to ask them to address this, it would be a good example of lobbyists and corruption influencing public policy that they can use in their campaigns, and if we can get them mentioning it on the campaign trail, that would get the attention of the media, to perhaps investigate further as well. Just my two cents... -k
Posts: 205 | From northern california | Registered: Apr 2008
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daise
Unregistered
posted
Pallone is owned. That does not at all mean that it is over. We have to get creative--like Betty!
I email copies of the ILADS Guidelines and now CT GA Blumenthal's press release to various sources. Anyone I can think of. I write a short yet powerful letter.
Those two documents are POWERFUL. People love to read about corruption and politics, and a number of people are angry with conventional doctors over their own illneses and conditions!
The time is ripe!
You know the anger we got from obnoxious doctors neglecting us? We can turn that bitter anger into power for the people: everytime I try to get the word out, I am teaching and IT FEELS GOOD!
There are all sorts of places to email information: If TV and hard press won't print our stories, well, there is nothing that says you can't fax it or email it!
We can email information to local support groups for MS, Lupus, rheumatoid arthritis, heart disease and so forth.
posted
Daise, you might want to take a look at the post in Activism about other patient groups taking notice, and go talk to them!
It's rather exciting - the diabetes folks reported on the successful Lyme guidelines challenge and wondered just what it was that those Lyme patients are doing and why aren't diabetes patients doing something about their problems too?!
Posts: 13116 | From San Francisco | Registered: May 2006
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If this bill is rewritten and then brought to a vote with this kind of IDSA influence, there will be a heckuva a lot of money going into the pockets of people with IDSA connections. It is only safe to pass this bill if the NIH mends its ways and there are safeguards to ensure fair distribution of the research money.
Politics sure stinks, doesn't it. Medicine has gotten pretty smelly too.
Good points, and I've thought about this as well recently when trying to figure out the best way to approach the situation. I certainly can't say I have much confidence that any research and reports resulting from the passage of this bill would be free of the common corruptness and influence from the typical figures presiding over lyme and health care, especially with agencies like the CDC and FDA being involved.
With that being said though, I guess it's best to face one hurdle at a time, and the IDSA/CDC, etc. clearly oppose the bill as it is currently written. If we can first manage to change Pallone's mind and get the bill to move closer to approval, then I assume we'd have to shift much of our focus to make sure the bill isn't tweaked much to better fit into a mold that the IDSA and CDC would be able to have more control of.
And then if the bill ends up getting passed in a similar form as it stands now, I guess that's the best we can hope for as I don't see being able to do much to control how the provisions of the bill are implemented. Hopefully, there will be enough oversight of any research and discussion, and the IDSA/CDC/etc. won't be able to minimize the power of the committee if the committee remains largely free of corruptness.
Posts: 43 | From NJ | Registered: May 2007
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