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» LymeNet Flash » Questions and Discussion » Medical Questions » Reason to celebrate- Action UPDATE- #8

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Author Topic: Reason to celebrate- Action UPDATE- #8
Honored Contributor (10K+ posts)
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CALL TO ACTION UPDATE 2008 #8 (September 28, 2008)

Pat Smith, President, Lyme Disease Association, Inc. (LDA)

Update: Today, history was made and patients' plight was revealed. By working together at grass roots level & focusing on what would best serve the entire community, our voices have finally been heard in the most prestigious Congressional arena.

What began as the routine business of Congressman Frank Pallone (NJ), House Energy & Commerce Health Subcommittee Chair− bringing his Committee health bills directly to the House floor for action− ended as a three Congressman debate on the plight of Lyme patients, chronic Lyme disease, and the failure of Mr. Pallone's health sub committee to bring up the Lyme bill, HR 741 (Smith NJ).

Congressman Frank Wolf (VA), HR 741 co-sponsor, called Mr. Pallone on the carpet for burying Smith's vital bill, which addresses the exploding Lyme disease epidemic sweeping the nation.

In an impassioned plea, Wolf repeatedly called for Congressman Smith's bill to be brought up for action. He spoke of the increase in cases in his own state of Virginia and pointed out that Mr. Pallone comes from a high incidence area himself, New Jersey.

Mr. Pallone responded that Lyme disease is a serious issue that requires a lot of study, since some doctors and his neighbors who are doctors have said antibiotic treatment can be dangerous, even cause death.

Congressman Frank Pallone indicated to the Lyme Disease Association (LDA) that he would bring up the bill before his committee in 2008.

After the IDSA lobbied congressmen in DC, Pallone refused to post the bill for any action in committee, saying we have to wait for the IDSA to reconsider its Lyme disease treatment guidelines under the settlement with the Connecticut Attorney General, effectively putting the disposition of the bill in the hands of the IDSA.

Since that time, volunteer patient advocates have worked together and continued to educate Mr. Pallone and Congress about the science supporting chronic Lyme.

In April, the LDA held two congressional briefings in DC, and in September, LDA and National Capital each held a briefing in DC.

Congressman Wolf entered into the Record the effects of Lyme disease on his district and the nation, describing in detail various complications associated with Lyme and the consequences of not being adequately treated.

He reported Lyme case numbers have risen dramatically in his state, and he knows his constituents are suffering due to Mr. Pallone's actions.

Congressman Christopher Smith then rose and laid out the rationale for action - vast underreporting of case numbers, misdiagnosis, inability of patients to get treatment and insurance reimbursement.

Mr. Smith then stated that his bill does not address treatment, but will provide a federal advisory committee and funds for much needed research to determine the status of chronic Lyme disease, that there is a companion bill in the Senate, and the House version has over 112 co-sponsors.

Mr. Smith said he personally knew many Lyme patients who were seriously debilitated due to chronic Lyme, and he described how patients were unable to be treated due to the treatment guidelines for Lyme disease published by the Infectious Diseases Society of America (IDSA) −a Society which has been investigated by the Attorney General of Connecticut for conflicts of interest in the guidelines' development.

Mr. Smith read into the record excerpts from the AG's action and settlement where the AG mentioned the conflicts and also the lack of all the science of Lyme disease being presented.

Mr. Smith also indicated that he believed a cover up of chronic Lyme exists.

Mr. Pallone called both Congressman Smith and Attorney General Blumenthal, ``grandstanders,'' and implied the AG was interfering rather than helping this situation.

Wolf & Smith demanded a hearing or some action on the bill; Smith cited a letter from the House Lyme Caucus of which he is co-chair, to Mr. Pallone.

Although the Congressional session is ending, a lame duck follow-up is still a possibility.

From the early days of educating representatives through massive letter writing campaigns, phone calls, petitions and countless personal visits to Washington DC offices, to the many rallies, protests, scientific presentations, formal gatherings and Congressional briefings, we are now seeing that the goals we set years ago are within our reach.

We have reason to celebrate.

We will provide updates as they become available - please stay tuned and be ready to take action if needed.

We suggest the Lyme community thank these two brave congressmen but wait until mid-week due to their tight schedules.

For those who missed the exciting exchange on the House floor, you can hear the clips by clicking on

Make sure you go through the entire clip, which ends with two totally separate talks by Congressman Smith.


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
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Thank you for posting this. Thank you, thank you, thank you.

Dying is easy. Living is harder.

Posts: 257 | From owensboro kentucky | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
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What a birthday present!!!!! [Smile]

Gotta love Frank Wolf and Christopher Smith.


Pallone is relying on how "deeply offended" he is. [Frown]

Give me a break!

I am deeply offended by his catering to IDSA.

Deeply. [cussing]



Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
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Wonderful news. Thank you. This is in my prayers.
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
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God bless Reps. Frank Wolf and Chris Smith!
Posts: 371 | From CT | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Will someone explain exactly what a 'lame duck follow-up' consists of?

I am imagining it is another session to address this specifically when Congress reconvenes, but I would like to know if that is correct.



NEVERMIND- I looked it up. [Smile]

Just in case I am not the only one who wasn't familiar with this term:

"lame duck" session - When Congress (or either chamber) reconvenes in an even-numbered year following the November general elections to consider various items of business. Some lawmakers who return for this session will not be in the next Congress. Hence, they are informally called "lame duck" Members participating in a "lame duck" session.

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
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Here I was thinking a Lame Duck session is one where all the

IDSA members come to testify on Lyme disease.

Makes sense to me.



Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
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LOL, Geneal, and happy birthday, too!! Wasn't it a great exchange on the congressional floor?!
Posts: 13105 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
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From the video it seems Pallone is taking the fight for the Lyme bill very personlly.

He asks why congress didn't act earlier - why are people more up in arms now against him.

I sent an email to him. Hope he or someone reads it.

Posts: 472 | From New Jersey | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
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Pallone looks awfully defensive....ya' think?

Wonder why?

Need to e-mail Frank Wolf and Chris Smith.

Anyone have any links?

Too brain dead today for this task.

Must of been the chocolate cake. [Big Grin]

I would love to send them my thanks and support.



Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
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Thanks for posting this.

It became clear while watching this video that Pallone has a personal relationship with some of the IDSA physicians. He mentions 2X's how his neighbors are physicians and members of the IDSA.

Judges are required to recuse themselves when there is personal involvement that might influence decisions. He is a judge in the respect that he is in a position of power and it is very clear that his relationship with IDSA members has strongly influenced his position.

It would be intersting to know if there are laws or rules about this process and if so, would he be considered to be in violation.

Pallone is either purposely misrepresenting his understanding of the bill or does not understand the bill and from the comments of other speakers, it seems that he is purposely misrepresenting.

"Many do not agree with the protocol that is being suggested if not mandated by that legislation."

He seems to be saying that protocols that use long term treatment would be mandated by this leglislation.

"Right now the majority of the doctors treat lyme disease in a certain fashion. Those who advocate for that legislation suggest a different protocol and frankly I have tried very hard as chairman not to mandate or make decisions for physicians as to what kind of protocols they use."

Apparently he refuses to awknowledge that protocols are being mandated NOW by IDSA and insurance companies.

We are asking for exactly what he states that he wants, for the protocols to NOT be mandated. The IDSA, CDC and insurance companies proclaim that they are not mandating treatment based on IDSA protocols but the threat of losing ones medical license and an inability to utilize insurance for patients says otherwise.

"In this case the protocol is very different from the overwhelming majority of doctors and so it's a very controversial issue that needs to have a lot of debate so there is absolutely no way that we could do something like that on a consent calendar because many of the members simply don't support it."

We are not asking for a law to be passed to force doctors to treat long term, we are asking that all of the science be considered in the decision making process. I guess if you think it is controversial to allow the science to be discussed in order to make reasonable decisions, then he is correct. [Big Grin]

Smith is saying that part of this bill will allow the science to be evaluated and Pallone flat out said that the CDC and IDSA already have the science!!

He is clearly listening to his neighbors and believes their view. Apparently he does not want to be confused by the facts. [rant]

Watching this video was an eye opener.


Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
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WOW -- everyone should watch this!!!!!!!

I have two new heroes.

"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

Posts: 822 | From California | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator

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Pallone will go down as one of the most destructive men

in history, when all's said and done.

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