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» LymeNet Flash » Questions and Discussion » Activism » Why is Pallone against the lyme bill?

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Author Topic: Why is Pallone against the lyme bill?
lou
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Does anyone from NJ understand this? According to his website, he generally takes enlightened views on other things. So why is he listening to the IDSA and not voters and patients? Too bad he is not up for re-election this year. We might have a better chance at influencing him in an election year.

Here is his bio at website:

http://www.house.gov/pallone/biography.shtml

[ 28. September 2008, 11:22 AM: Message edited by: lou ]

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bettyg
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lou,

medical lobbyists paid pallone almost 1/2 million $$$$ ; whose side would you be on if MEDICAL DRS. don't wait it discussed?? [cussing] [puke] [tsk] [toilet]

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Robin123
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My understanding is that the IDSA met with him the day after Blumenthal announced his findings, and probably paid him off. Does anyone else know?
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Robin123
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Oh - Betty already answered the question.
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Robin123
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So how do you like that, when reps are bought, and take the nation down?

I hope we're going to get somewhere in Congress now that they've all received a copy of the film and book, and the two reps gave Pallone a drubbing in Congress today.

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adamm
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If you really want to know what I think about its our situation--

endgamethemovie.com

prisonplanet.com

They put fluoride, a proven neurotoxin, into our drinking water, and they inject our children upon birth with quantities of
mercury that they'd have to weigh 265 lbs. to safely absorb--
seems like Lyme's just one more thing certain interests out there are using to dumb us down and cripple us.

[ 28. September 2008, 12:33 PM: Message edited by: adamm ]

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MM DRYMON
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I used to be involved in politics in New Jersey and went to Rutgers in New Brunswick for a while. It has been pointed out to me that Pallone's district includes New Brunswick, which is where UMDNJ and Robert Wood Johnson Hospital is ---home of the neighbor doctors who may be Lenny Sigal and hisgang!!!!!this group has a lot of political influence in N.J.-donates lots of money to politicians etc. Having N.J. Lyme patents protest and raise as much of a rumpus as possible is probably a good thing-especially now that Pallone has said on the record that he will be holding hearings on the bill. You wouldn't want him to "forget about it"-the doctors have the money but the populous has the votes.

A Jersey Girl living in Maine.

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lou
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Am wondering about the doubts some people have that the current lyme bill could be subverted by the opposition to remove the protections, so that the money would be provided but used by the bad guys against us.

If that outcome cannot be ruled out, then maybe a hearing is a better product from the recent briefing. The govt has botched this disease, and if the govt changed their approach, as a result of an embarrassing public hearing in Congress, then that would be very desirable. It is possibly risky to get the money for lyme research but have the same govt people in place calling the shots.

I could be wrong but here is what seems to be the best order of events:

1. Force the govt health agencies to do a better job in handling the lyme epidemic.

2. Then get money for research, that will subsequently be used in ways that help, rather than hurt us.

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Doomer
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Pallone's "neighbors" are IDSA docs. Have a look at the congressional debate on the lyme bill.

http://lymerights.org/html/house_debate_on_lyme_bill.html

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Tincup
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Lou... excellent points. I had the same concerns and was able to learn and get involved.. so I can see the picture more clearly now.

I will try to help out here and explain some things that might make the picture more clear for all. These are my opinions and observations from working on this stuff.


`````````````````````````````````````````````````

You said... "Am wondering about the doubts some people have that the current lyme bill could be subverted by the opposition to remove the protections, so that the money would be provided but used by the bad guys against us."

To sum it up and not be too long with explanations...

Look at the bill as ONE part of the overall efforts.

1. The AG has discredited the IDSA. More actions in the works... and by the time they get done with them... no one will want to be playing with and/or especially giving money (research funding) to the boys with the stinky pants, without implicating themselves in the process.

2. CDC and NIH are aware of problems through pounding by LDA, ILADS, patients, etc... and are slowly but surely taking actions as we speak. Hurry them up? I'd LOVE to.. but is is the wheels of justice working.

The "officials" will want to distance themselves from the boys with the stinky pants too.. or go down with them. We've seen this happening already. Is it enough? No.. but again.. we keep pushing. We must keep pushing. We finally have our big foot in the door... and our big mouths- speaking for myself here. HA!

3. There are Plans B, C, D, etc in the works in the event this one has snags. Bases are being covered... and action from the other plans is coming alive. There are Plan AA, BB, CC, DD that are also working in conjunction with the original Plan A.

4. If ALL the plans fail... every single one... which I can't imagine as we've gotten some big ones done already (AG action for example)...we haven't lost a thing. They already get ALL the money, with no checks and balances. They have all the control... with no opposition. BUT....

If we don't keep pushing.. and do nothing... they will continue to get it.

Keep in mind this bill is NOT a one person deal/bill. It was designed/written BY Congress and reviewed by XX numbers of people on OUR side, and it was made for all of us, to HELP all of us. The Congress reps helping us see the big picture and advise on what needs to be done.

`````````````````````````````````````

Lou said... "If that outcome cannot be ruled out, then maybe a hearing is a better product from the recent briefing. The govt has botched this disease, and if the govt changed their approach, as a result of an embarrassing public hearing in Congress, then that would be very desirable."

Yes.. exactly. But if you listen to Congressman Smith and Wolf- example the most recent clip from the weekend... who are totally behind the bill.. along with 115 cosponsors (just on the House side) and other supporters including Pallone's own committee members... they KNOW there is a problem already.

Can things still mess up? Sure. EVERY bill has that chance. Look at the financial situation and the problems they are having with that bill for example.

BUT.. if everyone of us keeps pushing their reps to do something to help us (support the bill is a good thing)... the ones who don't will be "in bed" with the IDSA .. who really need a change of pants about now.

``````````````````````````````````````````````

Lou said... "It is possibly risky to get the money for lyme research but have the same govt people in place calling the shots."

Yes, it could be. That is why there are many other actions that ongoing to try to prevent that from happening. If we don't try we end up with the same old same old and nothing changes.

```````````````````````````````````````````````

Lou said... "I could be wrong but here is what seems to be the best order of events:

1. Force the govt health agencies to do a better job in handling the lyme epidemic.

Exactly! That is why we need a scientific advisory committee to break up the monopoly (provided for in this bill). It will have OUR side there too making policy... rather than JUST the IDSA. That is why the IDSA is fighting the bill. They don't want to be exposed or to loose control.

Opening up the scientific process to more than the boys with stinky pants is a HUGE threat to them.

BTW- Approaching this situation from many avenues is a part of the ongoing actions being done.

```````````````````````````

2. Then get money for research, that will subsequently be used in ways that help, rather than hurt us."

Exactly!

A. Get rid of IDSA stronghold.

B. Break up the monolopy.

3. Have people in power- Congress helping us.

4. Have research and money distributed more fairly.

To note- if the stinky pants boys get some of the money, that is to be expected. Right now they get it all.

If OUR side got 30, or 50, or 80 percent...

It sure beats what we get now.. which is NONE!

Good points lou!

[Big Grin]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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lou
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Well, you know, I have been at this so long and seen so much, like the last minute evisceration of the RI law, that I can't help but think of the possibilities.

Hope you are right that there are plans for all eventualities. My previous experience is that the pro's will always have an advantage over the amateurs in any field.

My current nightmare is the IDSA stacking the deck in the review, which they will surely try to do. Don't bother to answer again on this one, as you have done so before. Just seems like we have got to have another "persuader" to act in good faith. Like hitting the mule upside the head with a two by four to get his attention before inviting him to move on briskly in the right direction.

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IMHisda
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Power corrupts.

Absolute power corrupts absolutely!!!!!

--------------------
RV

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Robin123
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Interesting discussion. I think, indicated by the passion and urgency shown by the two reps on the floor during the debate, that there will finally be enough interest amongst Congressional reps to get the ball rolling.
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daystar1952
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Permission to repost. I agree with Karen. We have been told over and over that we have to work together. Working together is a good idea but it doesn't mean we all have to be under one organization.

One organization equals MONOPOLY. Monopolies can be dangerous as they often do not represent everyone . When anything gets too big, the machine takes over, people are not informed and are not included in the decision making process. Actions are taken in secret.

Please read what Karen has to say below and if you doubt what she is saying, we all have the right to learn about the Bills ourselves. Let's investigate and study the legislation that involves our own lives and the lives of unsuspecting ill people around the country . In the past I have never involved myself with the legislation part of it all because I thought it was too complicated and I didn't know who to listen to. I am going to try and change that now by reading the Bills, thinking about them carefully to see if they make sense and go with my own gut feelings. I know I don't want to trust government with millions of dollars for Lyme if we don't have oversight Marjorie Tietjen


****** ** URGENT ACTION *********

-We MUST stop the last-minute secret dealings to pass the two Lyme bills
stalled in Congress. These bills give MORE power and money to an already
unresponsive and bloated gov't. HR 741IH (Smith), S 1708S (Dodd)

Call, & fax, & email to the following stating you are:
1. NOT in favor of the current Lyme bills and want them stopped because
they give TOO MUCH power and money to an already un-responsive &
bloated government that has already failed to meet the needs of the
community!
AND
2. Lyme is too serious to leave in the hands of a few people in the
community who conduct secret behind-the-scenes deals - such as the
current bad legislation. Ask for a hearing that includes the FULL Lyme
community, including you, to have input into any future legislation
*before* it is crafted and *before* it is introduced.

End with your name, address, & phone number so you can be contacted when
Congress starts up again.

------- Call the following people right away. Go email to them off their
websites, fax where you can.
* Chris Smith - p 202-225-3765 f 202-225-7768
(Prime offender who keeps submitting the tired old legislation, without
input from the full Lyme community, that
increases the unfunding and power of an already unresponsive government.
* Chris Dodd - (202) 224-2823. Senate supporter of the companion bill.
* Rep. Wolf - 202-225-5136. Tell him you do NOT want more power and
money for the gov't. NO Lyme bill!!

------ Also give the same message to these people if you can . . . (Key
committee members).

* Sen. Tom Harkins - 202-224-3254. (you can email him off his site).
* Sen. Arlen Spector - 202-224-4254 (you can email him off his site).
* Rep. Pallone - 202-225-4671
* Your own Senator & Your Representative.


BACKGROUND:

Anyone reading this must now stand up to any bully who attacks our right
to know what is going on! The current legislation does NOT have the
support of the over half of the Lyme community and people only now have
the chance to call their Senator and House member to stop the
steamrolling of the same old obsolete and dangerous legislation into a
bill. While life has evolved over the last 10 years, we are only getting
a rehash of old legislation. Well, we all deserve better! Some better
ideas should have come forward, but are not even given a chance to be
heard because THIS legislation is being conducted in secret
behind-the-scenes actions. If the life of someone you know depends
on a cure to Lyme . . . then you can not afford to be on the sideline,
watching while others blunder through a well-intended but poorly
constructed legislation. You need to fight for your own rights to be
heard and control your own destiny!

I have watched as "petitions" in favor of this tired legislation have
included names of groups who were never asked for inclusion of their
name, could not get their name(s) removed from the list, were not real
groups but individuals masquerading under assumed names, and the like.
This falsely represents the community's support and it is time it stops!

It is time our community stands up and demands its own multiple voices!
It seems that just a few internet-bound individuals are the gatekeeping
spin-doctors to what Lyme-concerned citizens are allowed to know and
think. NO MORE! Patients, doctors, family members and others must now
get fully engaged and demand input into the next round of legislation.
This also means that "Lyme literate" non-ILADS medical providers must be
included too!

If you want to be part of the solution then call Chis Smith AND Chris
Dodd and demand they stop reintroducing the same bill and solicit ideas
from us all! No one should be putting dangerous anti-Lyme wording into
legislation introduced into Congress!

And, you should demand that any Lyme group that thinks it controls the
federal Lyme legislation stop putting the rest of us in jeopardy!

I have been in the community for over 20 years and find we need many
more diverse voices in order to find the answers to the many problems
with tick-borne diseases. Please stand up and take back control of your
and our destiny!

My best,

Dr. K. V-Forschner

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Tincup
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Hey lou...

I agree. With all the worn out 2 x 4's we gathered, we could have a nice bonfire someday!

[Big Grin]

Im..

I agree. The IDSA with their 8,000 members has done awful things to humans. I honestly don't know how they live with themselves.

[Big Grin]

Robin 36857

Yes... the ball has been rolling as we've pushed and pushed...

But thanks to Congressmen Smith and Wolf.. they've put some life into the giddy-up.

Three thumbs up for them! With chocolate too!

[Big Grin]

Day...

Good to know you plan on reading the bill.

I hope everyone has... or at least will. We are almost there!

Very encouraging.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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northstar
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Re: K.Forschner letter:

Bills are amended when they reach the floor for discussion. First get your foot in, contact your local reps and senators, telling what you would like to see changed.

This is why it goes to the floor for debate.

No bill goes in, and comes out, the same....they
are always worked on. These modifications can be done at one's state level.

If one does not want any bill, any way, any time, or any form, ever...then kill it now and forever.

That is why they have debates...to adjust, to add (including pork barrels, etc), etc....all this is done by individual reps and senators when the bill is being debated....assuming it ever gets to the floor.

But I think modifications through the legislative process at one's individual state level (introducing amendments, language, etc) might be a more productive
avenue.

Anyway, this is just another point of view to consider.

Northstar

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MM DRYMON
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Sunshine kills the most germs!

If I am reading it correctly-the way the bill is currently written, if money is appropriated for Lyme education and research it is distributed based on decisions made by the NIH IOM Board. Read the list of IOM members-very scary-Dr. McSweegan is a prominent member. He has bragged about his strong influence on their decisions- a chilling thought for anyone who wants any meaningful research to ever get done.

A congressional hearing with strong advocates like Wolf and Chris Smith, however, would be a very good thing. It might result in a good bill!

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northstar
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So that is the clincher....McSweegan on NIH IOM....aaaaah.

Can anyone explain this statement?(what is the
dangerous anti-lyme wording?):
quote:
No one should be putting dangerous anti-Lyme wording into
legislation introduced into Congress!

Also, what does jeopardy refer to?
quote:
stop putting the rest of us in jeopardy!
And what is her proposal for/description of a good bill?

There are no positive statements or direction in this letter.

Also, this statement could be interpreted to mean that no funding bill should ever be introduced, since the reasoning is that the gov't is already bloated and inadequate........

quote:
hey give TOO MUCH power and money to an already un-responsive &
bloated government that has already failed to meet the needs of the
community!

With what has happened on Wall Street, I just dont know what is going to happen to this country. The deficit will seriously curtail govt. spending.
So maybe this is a moot discussion.

Northstar

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bettyg
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to marj and karen f...


i noticed also that karen complains about this/that, but does NOT offer any suggestions on wording, etc. for our NEW BILL to be discussed in next session! why?


we all know if we are going to complain, we also need to offer suggestions of what we want to see covered in anything, and then go from there to hammer out a win-win solution.


that wasn't done with her letter/post above. these are my gut reactions.


i worked for 3-4 years on a 75 person strategic planning committee representing over 3500 employees. i learned this over and over and how SLOW GOVT. WORKS at a snail's pace!


i still want things to happen now, but did learn why they take so long to implement by my being on this 75 person committee!

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daystar1952
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Hi all.....I was aksed to post this...for obvious reasons


Please repost.
-------

Both Tom I applied to post on Lymenet and were declined. So, please let
them know I can not engage in discussion there.

My suggestion is that the gov't has to be forced to 1. focus on a
perfect direct detection test - and 2. that they must disclose their
funding and direction that is already set for the next 3-5 years.
Everyone should know what the government already formally plans for
Lyme/tick-borne funding and activity for 2009, 2010, and 2011, so that
we all can bring our thoughts and pressures to public officials and
government employees so our opinions can be included in the planning
process for 2012/2013/ and 2014!
We need a voice in the process before it is set in stone.
Others can proposed what form that transparency will take.

Karen V-F

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northstar
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Who is Tom?

This is a very productive and thought provoking letter (from KF)....very good points.

1. Perfect detection test....
This is a hornet's nest. The problem is evidence of infection vs. symptomology.

a. Evidence: they need to bring back in the vaccine bands (31,34 ?) into Western blots, since so few people had the vaccine. It is so simple just to ask if patient had the vaccine....

Regarding Band 41: there is an interesting website by a MD:
http://lymemd.blogspot.com
In one of his blogs, he discusses Band 41.
quote:
Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out.

What about other spriochetal diseases? Yes.

It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say? These diseases can be ruled out by clinical presentations.

Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme.

I am quoting a paper co-authored by Allen Steere, circa 1984. Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no.

This is interesting, since the meme is "oh, band 41 does not mean anything..everyone has it" bla bla.....

b. Symptomology: As long as IDSA requires 2 dimensional symptoms that you can photograph, then too many symptoms will be tossed out.

So you can have a perfect test, and people can test positive by this perfect test, but still be asymptomatic at that point in time.

Perhaps a positive test + asymptomatic is a "watch" condition, rather than "you dont have it" condition. The immune system is doing its job...for the time being.

Perhaps then, that is where the clinical judgment comes in. So the symptom list has to be broadened when it is used to add to the testing for a dx.

They use algorithms now, so the components need to be expanded. They also have to be used with the understanding that these are only statistical models, and do not apply to individual cases, as there are bands of errors and variability. It is not a go/no go decision...as much as they would like it to be so.

2. 3-5 year plan: that is really relevant...who could be asked about this?


The original question is why is Pallone against this bill. The ensuing questions and suggestions from KF are too intelligent for a politician.

He is too aligned with IDSA to consider these things, or even care...their agenda is not the betterment of people with tbd's.

I think that IDSA will be against any patient or llmd input. So it does not matter how specific and detailed a bill is, or even if it fulfilled all the criteria listed above by KF, they will be against patient and llmd input.

The bills are for appropriations, with general goals.

The specifics are what is hammered out when it goes to the appropriate agencies, such as NIH, CDC, etc. The original writers and supporters of the bills apply the pressure to the agencies to direct the use of funds.

The patient and llmd input are critical to the direction of use of funds to disallow or prevent misuse of funds. This advisory committee is important in its existence, membership, and in its focus.

Perhaps the membership could be a focus of constituent + local rep input? And using the writers and co-sponsors and others who supported the bill, as the ones wielding the club (or carrot).



Northstar

[ 30. September 2008, 08:43 AM: Message edited by: northstar ]

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AliG
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Perhaps those who thing the bill needs to have every single detail listed and spelled out, don't understand the legislative process. ???

As I understand, there would be changes made when the bill finally gets formally discussed. I don't know if there's ever been a bill that just got through without any changes.

To the people who are trying to stop this bill from being heard. I really don't understand why you are trying to silence our voices, when we finally stand a chance of having them heard.

Do you know how much publicity this cause would get, if ANY Lyme bill were to be passed, especially being such a controversial topic?

IF it gets passed and there are things changed or attached during the process that cause problems, then we FIGHT for an AMENDMENT to the bill!!!!!

Are you saying that you believe that the Steeres & McSw**g**s would have control over the Federal Advisory Committee?

The plight would already be out of the closet. We would take them all down TOGETHER.

How does it happen that people who really all ultimately want the same things have come to try to thwart each others progress? This could probably only happen with a disease like Lyme.

I think that there may be someone feeding on side of this debate bad information & fanning a flame so that we'll all burn each other up.

Isn't that EXACTLY what the Steere's, Worms*rs & McSw**g**s of the world would like us to do?!!!

Lets fight TOGETHER to make a difference, not fight each other. United we stand, divided we can't even sit up.

We even have to debate whether things should be debated..........must be Lyme, add that to the symptom list. [Frown]

[ 02. October 2008, 12:52 PM: Message edited by: AliG ]

--------------------
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.

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AliG
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Now, can everyone in Pallone's district please contact mtree to get flyers to distribute for the "Under Our Skin" screening at Centrastate.

It would be especially good to get them distributed in the areas surrounding his offices, but ALL voters could benefit from seeing it.

The web address to Open Eye Pictures is on them. If people are unable to attend, but are interested in viewing it, they can purchase the DVD through the website or find a listing of other showings there.

That should help Pallone see that we mean to take him down, if he keeps this nonsense up.

Can those who would impede progress, until the cows come home, would help us get the bill passed, we could help them get whatever changes made.

LET'S WORK TOGETHER PEOPLE!!!!!!!


please.

[confused]

--------------------
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.

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lou
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I am trying to decide whether to delete this thread, because it is being used to sow dissension.

In the meantime....

I don't think very many lyme patients are prepared to start analyzing proposed legislation. They have no experience, and most don't even know how laws are passed. Civics class was a long time ago. This is why we have organizations with people who do have some background and can represent us.

With everyone out doing this on their own and contacting their reps, the result will be chaos and so confusing to legislators that they will do nothing at all, and get mad at being pulled a hundred different directions.

The IOM was in a previous version of the law, don't think it is the current one.

Someone needs to find a way to bring together the factions in lyme advocacy. It is as simple as that. Otherwise, it just looks like a power struggle that does not bode well for getting things done. They don't necessarily all have to be part of the same organization, although that would be ideal, but they do have to work together on the major issues. Or divide up the pie and work on separate things, so everybody has a job.

It is really terrible for one lyme organization to be fighting another one in this way. Public suggestions that patients should torpedo the work of another organization is going to turn everyone off-patients, legislators, activists. It just makes me heartsick to see this happening years on end.

And a public forum like lymenet is no place to plan a campaign, just good for alerting the troops when their help is needed. Do you want to have a conversation with the gestapo listening in? And they are definitely listening in and making their plans to thwart us. "Secrecy" is required in a situation like this, to keep the IDSA and the lyme mafia from finding things out prematurely.

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AliG
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I edited the google-freak's name to make his life more difficult. [Wink]

quote:
it is being used to sow dissension.
I think it is being used to TRY to sow dissension, not so sure that would work.

I think there are some pretty good arguments made here, as to why dissension may not be beneficial to our joint goals, by others in this thread.

Just my opinion.
[Smile]
Ali

--------------------
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.

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pmerv
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Lou, while you are considering, let me slip in my 2 bits, which I posted earlier on General because I couldn't get on here. Some of you may have read it already.

***

I am writing this to provide some background for people who may not be familiar with the long history of contention within the Lyme disease community over federal Lyme legislation, pitting Connecticut's Lyme Disease Foundation (LDF) against New Jersey's Lyme Disease Association (LDA). Patients often feel confused; many are angry over the division. Few know all the details.

LDA first worked with NJ Congressman Chris Smith to introduce Lyme legislation in 1998. This first bill was introduced too close to the end of the congressional session to pass, and did not go anywhere. It was reintroduced the following year. Many Lyme groups across the country supported the bill, with the notable exception of LDF. The current legislation is very similar to Lyme legislation introduced by Congressman Smith in 2001. This was the year the LDF introduced a completely different bill two months later, dividing the community and confusing Congress. No bill passed that year.

In 2005, LDF supported Congresswoman Sue Kelly's (NY) introduction of a Lyme bill just days after LDF director Karen Forschner, in a meeting with LDA's Pat Smith and legislators, had agreed to work on compromise language with LDA. The Kelly bill was a barebones bill which established an advisory committee and nothing else. Although compromise language was eventually worked out, the legislators were very annoyed, and no Lyme bill passed that year either.

Now LDF - again in complete opposition to LDA and many national Lyme groups - is congratulating Health Subcommittee Pallone for not allowing the LDA-sponsored Lyme bill out of his committee for a hearing, claiming that it is "dangerous."

Here we go again.

LDF apparently felt comfortable supporting Kelly's bill with an advisory committee with no requirement for balanced membership, and which placed total reliance on that committee to determine goals and funding. CALDA and other LDA affiliates thought this bill was dangerous. At the time, Forschner's rationale for supporting the Kelly bill was NOT that the Smith bill was "dangerous," but that the Smith bill "could not pass."

The current LDA-sponsored bills have many specific directives and safeguards to prevent the doomsday predictions made in a recent Forschner email. The legislation reqires balance on the advisory committee. The IDSA strongly opposes the bills because they understand that this legislation threatens their supremacy and allows their rival, ILADS, a seat at the table.

The real danger to patients is that the bill won't pass and we will be subjected to months or years of continuing IDSA tyranny with no new federal funding for research. The bill does not "suggest" or "mandate" any treatment protocol, contrary to statements made by Pallone. The IDSA visited Washington and made sure their views would prevail. They are no doubt delighted to have Forschner's support.

History Repeats Itself

LDF often adopts positions contrary to positions held by the LDA and affiliates. For example, while LDA was in Washington trying to get the FDA to withdraw the LYMErix vaccine, LDF accepted funding from vaccine manufacturer SmithKline Beecham and supported the vaccine until it was about to be withdrawn, then jumped on the bandwagon calling for withdrawal.

Another example was when the Connecticut legislature was considering legislation mandating insurance coverage for treatment of Lyme disease. LDF supported it while some Connecticut activists begged them to "kill the bill." It passed with amendments imposed by the strong insurance lobby that, according to LLMDs, make it more difficult for chronic patients to obtain treatment. Rhode Island advocates, confronted with a similar situation with insurance company opposition, agreed to a sunset provision (the law would die automatically in one year) for their legislation rather than agreeing to a damaging treatment ceiling such as was passed in CT.

More recently, LDF supported the revision of the CDC surveillance criteria proposed by the Council of State and Territorial Epidemiologists (CSTE) which created a new category for "suspected" cases. LDA, CALDA and other LDA affiliates and the International Lyme and Associated Diseases Society (ILADS) opposed the change, fearing that the new category was a "black hole" where thousands of cases would disappear without a trace, with no accountability. CSTE also restricted the definition of an endemic area, making it more difficult for people to be diagnosed in areas of emerging infection. The LDF wrote to CDC director Julie Gerberding, praising the proposed changes. [Tincup points out in her thread Attempts to kill the bill that numbers are dropping already.]

In conclusion, Forschner's position on the federal legislation puts LDF right in line with IDSA. Both want to kill the bills. CALDA supports the federal bills and will continue to focus on moving our agenda forward to benefit patients. We encourage you to join LDA, CALDA, Time for Lyme, ILADS, and many other Lyme groups in supporting the federal legislation. Please read the text of the legislation by going to http://thomas.loc.gov/cgi-bin/thomas and if you have questions, feel free to ask. Discussion and debate are healthy. Sabotage is not.

If you are interested in reading in more detail about the conflict over the 2001 bills, go to
http://www.lymedisease.org/lyme_times/issues/lyme_times_archives.html and click on Download Issue under Fall Issue, 2001.

Finally, we have been discussing and debating this legislation since 1998. We have already seen Karen's idea of a good bill - one that "can pass" but has no safeguards. We did not think that was good enough for the Lyme community, which is why we fought for HR741. We hope you agree.

--------------------
Phyllis Mervine
LymeDisease.org

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pmerv
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Here's the bill language. IOM was removed a couple of years ago. It's a great bill and Cong. Smith is a super proponent who has a track record of successful legislation. He is a fighter and I'm sure he is surprised at how much fight this bill is taking.

CALDA had a volunteer lobbyist for several years who passed a few bills for us, but there was one he never could pass. The first year someone lied to the governor who then vetoed it. Other years other things happened to it. Our lobbyist also had a great track record and had passed numerous bills in his former professional life, but the fight he got over the Lyme bill was unprecedented.

This is why we all have to stick together and why Karen's attacks are so intolerable. We have tried to pass HR741 or it predecessors for 10 years! It would be nice if our grandchildren would have the benefit of more Lyme research, better surveillance, good tests, etc.....

BILL TEXT

Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007 (Introduced in House)

HR 741 IH
110th CONGRESS
1st Session

H. R. 741

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

IN THE HOUSE OF REPRESENTATIVES
January 31, 2007

Mr. SMITH of New Jersey (for himself, Mr. STUPAK, Mr. HOLDEN, Mr. GILCHREST, Mr. SHAYS, Mrs. LOWEY, Ms. DELAURO, Ms. BEAN, Mr. LANGEVIN, Mr. BAIRD, Mr. KIRK, Mr. ACKERMAN, Mr. GRIJALVA, and Mr. MCHUGH) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.

(4) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.

(5) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other diseases, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.

(6) Studies indicate that the actual number of tick-borne disease cases are approximately 10 times the amount reported.

(7) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVISORY COMMITTEE.

(a) Establishment- Not later than 180 days after the date of the enactment of this Act, the Secretary of Health and Human Services (referred to in this Act as the `Secretary') shall establish within the Office of the Secretary an advisory committee to be known as the Tick-Borne Diseases Advisory Committee (referred to in this section as the `Committee').

(b) Duties- The Committee shall advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can--

(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;

(3) ensure interagency coordination and communication with constituency groups;

(4) ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and

(5) advise relevant Federal agencies on priorities related to the Lyme and tick-borne diseases.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v) of subparagraph (B).

(B) GROUPS- The groups described in this subparagraph include the following:

(i) Scientific community members representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.

(ii) Representatives of tick-borne disease voluntary organizations.

(iii) Health care providers, including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases.

(iv) Patient representatives who are individuals who have been diagnosed with a tick-borne disease or who have had an immediate family member diagnosed with such a disease.

(v) Representatives of State and local health departments and national organizations that represent State and local health professionals.

(C) DIVERSITY- In appointing members under this paragraph, the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.

(2) EX OFFICIO MEMBERS- The Secretary shall designate, as nonvoting, ex officio members of the Committee, representatives overseeing tick-borne disease activities from each of the following Federal agencies:

(A) The Centers for Disease Control and Prevention.

(B) The National Institutes of Health.

(C) The Agency for Healthcare Research and Quality.

(D) The Food and Drug Administration.

(E) The Office of the Assistant Secretary for Health.

(F) Such additional Federal agencies as the Secretary determines to be appropriate.

(3) CO-CHAIRPERSONS- The Secretary shall designate the Assistant Secretary of Health as the co-chairperson of the Committee. The appointed members of the Committee shall also elect a public co-chairperson. The public co-chairperson shall serve a 2-year term.

(4) TERM OF APPOINTMENT- The term of service for each member of the Committee appointed under paragraph (1) shall be 4 years.

(5) VACANCY- A vacancy in the membership of the Committee shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(d) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, after providing notice to the public of such meetings, and shall meet at least twice a year with additional meetings subject to the call of the co-chairpersons. Agenda items with respect to such meetings may be added at the request of the members of the Committee, including the co-chairpersons. Meetings shall be conducted, and records of the proceedings shall be maintained, as required by applicable law and by regulations of the Secretary.

(e) Authorization of Appropriations- For the purpose of carrying out this section, there is authorized to be appropriated $250,000 for each of the fiscal years 2008 through 2011. Amounts appropriated under the preceding sentence shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act, except that no voting member of the Committee shall be a permanent salaried employee.

SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, SURVEILLANCE, PREVENTION, AND RESEARCH OF LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- The Secretary, acting as appropriate through the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Commissioner of Food and Drugs, and the Director of the Agency for Healthcare Research and Quality, as well as additional Federal agencies as the Secretary determines to be appropriate, and in consultation with the Tick-Borne Diseases Advisory Committee, shall provide for the coordination of all Federal programs and activities related to Lyme and other tick-borne diseases, including the activities described in paragraphs (1) through (4) of subsection (b).

(b) Activities- The activities described in this subsection are the following:

(1) DEVELOPMENT OF DIAGNOSTIC TESTS- Such activities include--

(A) the development of sensitive and more accurate diagnostic tools and tests, including a direct detection test for Lyme disease capable of distinguishing active infection from past infection;

(B) improving the efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; and

(C) providing for the timely evaluation of promising emerging diagnostic methods.

(2) SURVEILLANCE AND REPORTING- Such activities include surveillance and reporting of Lyme and other tick-borne diseases--

(A) to accurately determine the prevalence of Lyme and other tick-borne disease;

(B) to evaluate the feasibility of developing a reporting system for the collection of data on physician-diagnosed cases of Lyme disease that do not meet the surveillance criteria of the Centers for Disease Control and Prevention in order to more accurately gauge disease incidence; and

(C) to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each State.

(3) PREVENTION- Such activities include--

(A) the provision and promotion of access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme and other tick-borne disease;

(B) increased public education related to Lyme and other tick-borne diseases through the expansion of the Community Based Education Programs of the Centers for Disease Control and Prevention to include expansion of information access points to the public;

(C) the creation of a physician education program that includes the full spectrum of scientific research related to Lyme and other tick-borne diseases; and

(D) the sponsoring of scientific conferences on Lyme and other tick-borne diseases, including reporting and consideration of the full spectrum of clinically-based knowledge, with the first of such conferences to be held not later than 24 months after the date of enactment of this Act.

(4) CLINICAL OUTCOMES RESEARCH- Such activities include--

(A) the establishment of epidemiological research objectives to determine the long term course of illness for Lyme disease; and

(B) determination of the effectiveness of different treatment modalities by establishing treatment outcome objectives.

(c) Authorization of Appropriations- For the purposes of carrying out this section, and for the purposes of providing for additional research, prevention, and educational activities for Lyme and other tick-borne diseases, there is authorized to be appropriated $20,000,000 for each of the fiscal years 2008 through 2012. Such authorization is in addition to any other authorization of appropriations available for such purpose.

SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- Not later than 18 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.

(b) Content- Reports under subsection (a) shall contain--

(1) significant activities or developments related to the surveillance, diagnosis, treatment, education, or prevention of Lyme or other tick-borne diseases, including suggestions for further research and education;

(2) a scientifically qualified assessment of Lyme and other tick-borne diseases, including both acute and chronic instances, related to the broad spectrum of empirical evidence of treating physicians, as well as published peer reviewed data, that shall include recommendations for addressing research gaps in diagnosis and treatment of Lyme and other tick-borne diseases and an evaluation of treatment guidelines and their utilization;

(3) progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease; and

(4) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne diseases.

--------------------
Phyllis Mervine
LymeDisease.org

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OptiMisTick
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Thanks, Phyllis, for posting the last couple of posts, all of which were needed for clarification.

And thanks in particular for posting the Much-maligned (by some) Bill.

WHAT? No treatment protocols? No government agency that is going to force children's Lyme doctors out of existance? No sneaky corrupt government committees set up without patient representation?

Where in here would anyone in their right mind see anything objectionable.

Oh, Right, this is just the ramblings of the JUMP AT THE LAST MINUTE AND CRITICIZE CROWD, the crowd that never really does anything constructive, just spits on the ones that do.

At any rate, this bill is as close as you all may get, folks, to finally having Legislator backing and cooperation. The chance may not ever come around again.

Get behind it and PUSH! And push the nay-sayers out of the way.

Encourage the critics to take positive and real actions that will benefit the Lyme community. Pick a cause - perhaps implementing a fund to help children who can't access treatment. And then ACT!

Meanwhile all good people stand together for the Bill. United we stand. No more lookbacks at what COULD HAVE BEEN!

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shazdancer
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I don't see the IOM anywhere in the current text of the bill.

http://www.govtrack.us/congress/billtext.xpd?bill=h110-741

The Secretary of Health and Human Services makes these decisions, in conference with the various government agencies AND input from the advisory committee that will be appointed under this act.

The Secretary is under a mandate to include many aspects of Lyme prevention, education, and research under this bill, including clinical outcomes research -- research that will directly improve the lives of patients.

Please take the time to read the bill in full.

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northstar
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What is the IOM?
http://www.iom.edu/CMS/6008.aspx
Is IOM part of the government or quasi-government? Who does IOM work for; where does your funding come from?

The National Academy of Sciences was created by the federal government to be an adviser on scientific and technological matters.

However, the Academy and its associated organizations (e.g., the Institute of Medicine) are private, non-governmental, organizations and do not receive direct federal appropriations for their work.

Studies undertaken for the government by the Academy complex usually are funded out of appropriations made available to federal agencies.

Most of the studies carried out by the Academy complex are at the request of government agencies.

What is unique about IOM?


The congressional charter mentioned above places the IOM in a unique role. Beyond that, the IOM process establishes it as an independent body, with its use of unpaid volunteer experts who author most reports. Each report must go through the IOM/NRC institutional process, assuring a rigorous and formal peer review process, a requirement that findings and recommendations be evidence-based whenever possible and noted as expert opinion where that is not possible.

Because the IOM is not a governmental organization, experts and committees have a greater variety of options to conduct the studies.

In particular, although many meetings are open to the public, the committee may deliberate among themselves, and is not obligated to conduct all their work in a public forum.

(more good information on that link)
------------
IOM from Wikipedia:
http://en.wikipedia.org/wiki/Institute_of_Medicine

The Institute of Medicine (IOM) is one of the United States National Academies, and is a not-for-profit, non-governmental American organization chartered in 1970 as a part of the United States National Academy of Sciences;

The President of the IOM is Dr. Harvey V. Fineberg, M.D., Ph.D., and Executive Officer is Dr. Judith A. Salerno, M.D., S.M.

We also convene roundtables, workshops or symposia that provide an opportunity for public- and private-sector experts to discuss contentious issues in an open environment that facilitates evidence-based dialogue.

............

Additionally, for more than 30 years, the IOM has managed The Robert Wood Johnson Health Policy Fellowships Program, designed to train outstanding mid-career health professionals in academic and community-based settings to assume leadership roles in health policy and management.
=================


boards:
http://www.iom.edu/CMS/2953.aspx

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northstar
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I think this is a good thread because it explores the criticisms in relation to the actual bill.

All the criticisms (i.e. needs this and that) actually are handled within the structure of the bill, so
they cannot be considered unaddressed or ignored.

Also, actual false accusations have been revealed.
Also revealed is the type of thinking in the accusations.

I learned alot.

Northstar

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Tincup
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You are right. This is a good thread. It is also nice to see folks actually digging into the bill, learning about it and sharing their thoughts!

Is it a perfect bill? In MY opinion, no.

A perfect bill would send the IDSA the Antarctica, send a pill to all doctors everywhere that would make them smart about Lyme and TBD's and force them to do the right thing..... and would have us a cure in less than 2 weeks.

Oh... and it would have been passed 30 years ago too!

BUT...

The work around this bill and its "not-perfect" aspects are being dealt with also.

Example.

My old old old truck. I just put 4 new tires on it.

Does that make it perfect? No.

I still need to pay attention to oil changes. And the tie rods. And address the clutch issues. And add more wiper fluid.

Same with the bill. Paying attention to possible other problems IS what is ongoing.

Hope that made sense.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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pmerv
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The other important thing about the legislative process that we learned in California is that choosing the right author is really important. If your bill author does not understand the issues - if for instance the IDSA can make a very reasonable-sounding argument for or against something in the bill - your author may agree to an amendment that could hurt the patient community.

Chris Smith is no beginner and understands our issues very well. Pat Smith has worked closely with him for 10 years now and educated him on all the details of Lyme. He understands power politics. He also has a track record as champion of underdogs and unpopular causes.

The Lyme bill avoids insurance issues because the insurance lobby is very strong and insurance legislation is a minefield. But, hypothetically, if we had an insurance bill and the insurance lobby got hold of it and persuaded legislators to modify the bill so they would benefit, rather than patients, then it is important to have an author who can resist pressure and if necessary, kill the bill (withdraw it).

I am confident that Chris Smith would do this. The same can not be said for others who might just want another notch in their belt, without regard to how it affects their constituents, you and me.

The other thing about legislation is that you are never done. Once you get something passed, you have to protect the ground you have gained - just like in a real battle. So it's never over. We will always have enemies, people who want to make a buck at our expense, or people whose interests lie in other directions. So we have to stay involved and keep fighting to consolidate our gains, once they are accomplished.

We have gained a lot in recent years compared to the first 20. We have IDSA on the defensive. We have ILADS. Best of all, we have LDA and its active partners Time for Lyme and CALDA, plus all the affiliates. We are talking and coordinating activities, complementing each other, trying not to get in each other's way.

There are some in our community who are not team players. They may just be turned off by certain personalities or they may have a different agenda. I'm sorry that it is so complicated and people have trouble deciding who to believe. It is hard to criticize another individual or group without looking bad ourselves. But I ask you, just look at our track records.

Look at what LDA has accomplished under Pat Smith's leadership. Look at the meetings in Washington and at the CDC, the withdrawal of the vaccine, the LDA research grants, the network of nationwide affiliates, the sheer number of meetings Pat manages to travel to. Thank Time for Lyme for their role in opening the Columbia Research Center. And then give a hand to CALDA's Lorraine Johnson, who led the charge against the IDSA and worked with the CT AG, and who is leading CALDA to ever greater accomplishments with physician grants, research, a great new website, and hopefully regular Lyme Times.

Last but not least, Lymenet for providing a forum to come together, exchange ideas, and reach out to the thousands who don't yet know they really have Lyme. Don't get discouraged. Don't give up. Let's try to keep focused on our job, in spite of attacks and setbacks!

Excuse me for going off rhapsodizing, but I think we all need a bit of encouragement now and then.

--------------------
Phyllis Mervine
LymeDisease.org

Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001  |  IP: Logged | Report this post to a Moderator
bettyg
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well said phyllis! [group hug] [kiss]

when you 45-50 gather in 2 wks. in san francisco, it can be a very productive event in ACTIVISM!!!

will be looking to hear all about that phyllis! [Wink]

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Tincup
Honored Contributor (10K+ posts)
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Phyllis...

You said...

"Excuse me for going off rhapsodizing, but I think we all need a bit of encouragement now and then."

Not sure.. but isn't rhapsodizing against LymeNet rules? And doing it while eating chocolate can't be good.

[Razz]

[Big Grin]

PS... I give you permission to go rhapsodizing all you want. I actually encourage it!

And now I will go look it up to see what it means.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Rhapsodizing...

To express oneself in an immoderately enthusiastic manner.

Hmmmmmmm...

Now that I've looked it up...

May I have this dance? I want to rhapsodize. How about you?

[Big Grin]

Yes, it is past my bed time.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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pmerv
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[lol]
aha, a chance to use one of those instant gremlins!

--------------------
Phyllis Mervine
LymeDisease.org

Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001  |  IP: Logged | Report this post to a Moderator
   

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