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» LymeNet Flash » Questions and Discussion » Activism » Lyme disease patients say Pallone stalling bill's progress- Protest Articles

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Author Topic: Lyme disease patients say Pallone stalling bill's progress- Protest Articles
Melanie Reber
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Lyme disease patients say Pallone stalling bill's progress


More than 100 people -- all of them angry, many of them sick, and a few in wheelchairs -- held a protest today outside Rep. Frank Pallone's Long Branch district office.

Carrying signs with messages such as "Frank Pallone: My Child is Waiting For You To Do the Right Thing'' and chanting, among other things, "Bring the Bill -- Up the Hill'' and "Vote in the Bill For Lyme -- We are All Out of Time,'' the crowd was upset with Pallone for what people called his inaction on House Resolution 741.

HR 741, sponsored by Rep. Chris Smith, would authorize a $100 million, five-year plan to expand Lyme disease research and education.

Smith says his bill, the "Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007'' would "improve tests used to diagnose Lyme disease, enhance the public health surveillance systems and improve our public education campaign to prevent new cases of Lyme disease. It also would create an advisory committee on Lyme and other tick-borne diseases.''

The bill is not likely to come up for a vote soon.

Pallone, chairman of the House Energy and Commerce Subcommittee on Health, issued a statement today saying he is awaiting an expert review panel's recommendations before taking action.

That news did not please the protesters from New Jersey, Pennsylvania, New York and Connecticut who think the bill should get a hearing.

Smith himself has said, "As the numbers show, the Lyme disease outbreak is only going to get worse the longer we wait to address it. I will continue to vigorously work with my colleagues in Congress to secure passage of this important bill to enhance our ability to treat this debilitating disease and begin to reverse the trend of record Lyme disease cases.''

The scores of protesters represented a number of grass-roots Lyme disease activist groups, all of whom believe that Lyme disease research is not getting enough attention from the government or the medical community.

"Congressman Pallone is deliberately ignoring tens of thousands of sick patients nationwide,'' said Joan Wire, a Tinton Falls resident whose 15-year-old son has been wheelchair-bound for two years due to Lyme disease. "Other diseases have money and a federal focus, and other diseases allow patients to be part of the process to find a cure for their disease. It's our turn now.''


http://www.app.com/apps/pbcs.dll/article?AID=/20080507/NEWS/80507082

[ 07. May 2008, 10:07 PM: Message edited by: Melanie Reber ]

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lou
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Yes, and his expert review panel will be the IDSA, and maybe they will rewrite the bill so it takes out the protections we need to ensure the money does not all go to IDSA clones. Somebody better be watching to see this does not happen.
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Melanie Reber
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If you register to 'become a member'...you can then leave comments on this article.

It is pretty fast and painless:
http://www.app.com/apps/pbcs.dll/article?AID=/20080507/NEWS/80507082

(the first and last name part can be skipped)

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northstar
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According to the LDA website, this bill was introduced in Jan., 2007.

The only changes from the last bill are dates:
This bill was introduced into the US House of Representatives on January 31, 2007 by Congressman Christopher H. Smith (NJ). The bill is identical to last year's House bill (HR 3427) except for updated dates in the bill.

So what does the "expert review panel" need to check? Dates? Or does this mean they never even
looked at it last year?

Northstar

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daise
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The article says:
"Pallone, chairman of the House Energy and Commerce Subcommittee on Health, issued a statement today saying he is awaiting an expert review panel's recommendations before taking action."

Pallone is owned.

daise

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adamm
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Pallone is just another of the dehumanizing fascists' toolsheds.


30 years * ( VERY conservatively) 200,000 people/year =

6,000,000 (many of whom we can assume will die from untreated
infection)

This is an atrocity of the greatest magnitude, and

They are all $%^&ing psychopaths. End of story.

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daise
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Adamm--yup.

[cussing]

daise [Smile]

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Geneal
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Sickening!!!!!

How do we reach Pallone and start bombarding his office with calls?

You would think President Bush would step up to the plate and help this bill along. [shake]

One of these days........now I know why postal workers lose their fine grasp on sanity. [dizzy]

Hugs,

Geneal

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Larkspur
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There is a lot of corruption in NJ government I understand

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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daise
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Pallone is owned: he's got to go to IDSA for permission.

[cussing]

daise [Smile]

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Melanie Reber
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Protest calls attention to Lyme disease bill
Pallone: Health panel focused on food and drug safety

LONG BRANCH - A "Lyme Disease Rights" protest was planned to be held yesterday outside Rep. Frank Pallone's office on Broadway in Long Branch from noon to 2 p.m.

The protest was organized by Lyme Rights, a grass-roots group that is seeking to have HR 741, the Lyme bill, put on the Energy & Commerce Health Subcommittee agenda for a hearing.

According to a press release from Lyme Rights, the Lyme Disease Association (LDA) spearheaded a patient campaign to see that the bill be posted for a hearing before the health committee.

The House Energy and Commerce Committee told the LDA that the bill had been posted and the patients'message had been heard, according to the release, but the LDA said the bill was never posted.

Lyme Rights members decided to take matters into their own hands and planned the protest to be held outside Pallone's office, the release states.

"Congressman Pallone is deliberately ignoring tens of thousands of sick patients nationwide," said JoanWire, a New Jersey resident whose 15-year-old son has been wheelchair-bound for two years due to Lyme disease.

"Other diseases have money and a federal focus, and other diseases allow patients to be part of the process to find a cure for their disease," Wire said, adding, "Every day we read about Mr. Pallone's concern about fish in New Jersey, yet he ignores our sick children."

"This is an important issue, but right now the Health Subcommittee has over 700 bills before it that are awaiting a hearing," Pallone said in a prepared statement Monday. "Currently, the subcommittee is focused on food and drug safety legislation, and protectingMedicaid and the Children's Health Insurance Program from harmful attacks from the Bush Administration."

Patients from across the country are mobilizing in New Jersey under the Lyme Rights banner to demand action on HR 741, according to the release, which states that Pallone is chairman of the Energy & Commerce Health Subcommittee and has direct control over the Lyme legislation.

"It appears Congress and Mr. Pallone are listening to the Infectious Diseases Society of America [IDSA]," the Lyme Rights group states in the release. "IDSAhas paid lobbyists and opposes the bill and all patient initiated Lyme legislation.

"IDSA says there is no chronic Lyme disease. IDSA published guidelines that are against all treatment beyond a few weeks for Lyme disease, are against alternative treatments for Lyme disease, are against supplements for Lyme and are against allowing doctors to have any discretion in diagnosing the disease," the release states.

The Lyme Rights group further says that the IDSA is being investigated by the attorney general of Connecticut, Richard Blumenthal, for violations of the anti-trust law in development of the IDSAguidelines.

HR 741, the Lyme and Tick-Borne Disease Prevention, Education & ResearchAct of 2007, authorizes $100 million to be appropriated for tick-borne diseases research over five years, according to the press release.

The funding will support several goals, including improving diagnostic testing and outcomes research, enhancing public health surveillance systems, and improving public education to prevent new cases of Lyme and other tick-borne diseases.

The funds would also help create an advisory committee on Lyme and other tickborne diseases where patients would have a voice in Lyme disease for the first time, the release states.

Lyme is the most prevalent vectorborne disease in the country and it has been joined by other tick-borne infections, including babesiosis, anaplasmosis/ehrlichiosis and tick-borne Bartonella, transmitted by the bite of the same deer ticks that carry the Lyme disease bacteria.

Lyme has been reported in all 50 states and is found in 65 countries worldwide. Lyme disease is often misdiagnosed as multiple sclerosis, amyotrophic lateral sclerosis (ALS, also called Lou Gehrig's disease), chronic fatigue syndrome, fibromyalgia,Alzheimer's and lupus, and if it goes underdiagnosed or is improperly treated, itmay cause patients to suffer persistent health problems.

For more information on Lyme disease and on HR 741, visit www.LymeDiseaseAssociation. org.

.....
http://atlanticville.gmnews.com/news/2008/0508/Front_page/022.html
....

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lymemommy
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For those who wish to read a first hand account of a protester, I posted my comments in the General Support" section, in response to Tracy9's post re: first article regarding protest.

I'd import it over here but am not that computer savy.

hopefully some of the other lymenetters who attended will post as well.

kp

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sparkle7
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It's not surprising. I really don't think calling & writing the gov't is going to do anything. We have to help ourselves.

Psychopaths are running the world.

PS - I was born in Long Branch... It's not a place of enlightenment & forward thinking.

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njgirl14
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"Pallone, chairman of the House Energy and Commerce Subcommittee on Health, issued a statement today saying he is awaiting an expert review panel's recommendations before taking action."

What's there to review?? Isn't that what happens when the bill is on the agenda, then the review/discussion begins?

Someone please explain the process to me.

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adamm
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The bill is to be gutted by the pigs.
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Tracy9
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I believe he is saying he is delaying the bill, putting it on the back burner pending the outcome of the IDSA/Blumenthal agreement.

He is waiting for the outcome of the review of the IDSA guidelines, in other words. He is using the Bluementhal agreement as an excuse to table this.

--------------------
NO PM; CONTACT: TracyWill9@yahoo.com

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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adamm
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In that case:

Is there any chance we'll get an outcome we want here?

Does this effectively kill the bill?

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Tincup
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quote:
Originally posted by daise:
Pallone is owned: he's got to go to IDSA for permission.

[cussing]

daise [Smile]

Or does money say it all? Guess who he gets the most contributions from?


Frank Pallone Jr (D)

Health Professionals $420,868

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

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bettyg
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what a COP OUT ... awaiting the NEW COMMITTEE'S outcome of 06 idsa lyme guidelines.

HOG WASH BIG TIME AND THERE'S THE MONEY $$$ TRAIL AGAIN .... MEDICAL PROFESSIONALS PALLONE'S NO. 1 CONTRIBUTORS!!! damn disgusting!


as melanie recommended, we need to sign up and send our written words to the newspapers who covered this on our behalf! [Wink]
******************************


THANKS TO ALL OF YOU WHO ATTENDED TODAY in spite of your physical health, $$$ for gas/transportation. kudoes to all [group hug] [kiss]

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pineapple
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It's all about the money.

The reason science is rotten in America is because the quest for funding has trumped the quest for truth.

The quest for their own bias to be "published" to boost their resumes.... the NIH money quest.... the quest for their ego boosts

IDSA Lyme guideline authors and their supposed International ad-hoc society are perfectly fine with the concept of "falsifying the hypothesis" into mindless, herd-like data generators and misleading the public.

Nothing is about the truth anymore.

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pingpong
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If there is "balone " form pallone...

I heard pallone is up form re-election...

?Swift vote pallone to the egress, and not to the con-gress?

Awaiting w/ bent ear for pallone's comment on the outcome of the panel's review.

--------------------
pingpong

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METALLlC BLUE
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Let's do something about this. We've pushed this far this last couple weeks. Let's not quit. Let's focus our anger outward in our actions, not words here, not frustration in our lives. Lyme Rage!

Write and call every newspaper, every news station, editor/article writer and report to them what Pallone is doing. Stay cool, stay focused! Write the Times, Newsweek, NBC, Fox, you name it -- write one letter, and send them to everyone. Floor these son of a *****es. Let's fight to the death (The "IDSA's" death), and take them down.

Do bad things, and bad things are going to happen to ya -- that's what's going to happen to Pallone, and every other crooked fool involved in this conspiracy.

Just think about it, you're sitting at home in front of your PC surrounded by four walls and a telephone that rarely rings and you're crippled, the sun is probably shining, and you've got your curtains pulled together. Light hurts your eyes, sound hurts your ears, you're desperate, often suffering in silence, and each night you go to bed, knowing your nightmares are actually moments if solace away from the true nightmare you experience upon wakening. A world where many of your friends and family have abandoned you, where marriages have been consumed, homes and jobs lost.

Do you know who is responsible for you being in this condition and not getting help? People like Pallone, and the IDSA.

Use your time online, when you can, to fight! You're not alone, your word is not wasted as though you're a single voice among a sea of lost souls. I assure you, there are a lot of us fighting this war, so let's speak with one voice, one purpose, and one intent. Let's speak for those without a voice, who are so crippled they can't even read this message board, for the children who are too young to understand, for those who have died in agony alone. Let's kick some serious *** !

[ 08. May 2008, 03:35 PM: Message edited by: METALLlC BLUE ]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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Charlienj
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I don't think this has been posted yet, but there's an official statement released by Pallone that can be viewed on his website: http://www.house.gov/apps/list/press/nj06_pallone/pr_may7_lymedisease.html

He does indeed indicate he is awaiting the results from the review panel that will be put together due to the results of Blumenthal's investigation. And he does come off as biased, particularly in the 4th paragraph by contrasting a "minority group of physicians" with "a membership of 8,000 medical specialists".

However, I agree with Metallic Blue in trying to utilize all available mediums. My sister was actually on the front page of the Asbury Park Press last year for her health issues with RSD and was likewise with Governor Corzine a couple months back when he signed a bill for NJ for RSD research and awareness.

With the prevalence of lyme disease in NJ (as somebody mentioned in another thread, everyone here knows plenty of people who have been treated for lyme, albeit mostly from conventional diagnoses and treatments), I'm inclined to think a powerful story from an area resident in regards to lyme disease could make a feature story in a major state newspaper. I perhaps may be able to get somebody with a compelling story into contact with a correspondence at the Press to arrange this, but I'll have to look into this to see if I'd be able to do so.

I'm also trying to do what I can to get Pallone to get the bill up for a hearing, but it may be a bit harder than anticipated based on the contents of his press release. Still, I'm in the process of putting together a letter myself and have been educating my pops who will be following up with Pallone as well. My parents live in Monmouth County (and have for most of their lives) and have interacted with Pallone in the past as well as my pops having his fair share of involvement with state and national politics through the years. Not saying anything will come of any of this, but I figured I'll do what I can.

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Robin123
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I recall that AIDS-UP spilled their blood on the Washington DC capitol steps and that action got a lot of national attention. Is there anything equivalent that we could do? Demonstrate with gigantic pics of ticks and spirochetes, do a protest with vials of ticks?
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bettyg
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copying link from charlie's post here so it's in arial vs. illegible timesnewroman that runsallwordstogether for me!


CONGRESSMAN FRANK PALLONE, JR.
Sixth District of New Jersey


FOR IMMEDIATE RELEASE: CONTACT: Andrew Souvall


May 7, 2008 (202) 225-4671
**************************



PALLONE AWAITS REVIEW PANEL'S
RECOMMENDATIONS TO DETERMINE
APPROPRIATE COURSE OF ACTION ON LYME DISEASE


Washington, D.C. --- At a time when conflicting opinions exist on the diagnosis of Lyme disease, U.S. Rep. Frank Pallone, Jr. (D-NJ), Chairman of the House Energy and Commerce Subcommittee on Health, said today that he awaits an expert review panel's recommendations to determine the appropriate course of action on Lyme disease.



The review panel was created as part of an agreement between the Infectious Diseases Society of America (IDSA) and Connecticut Attorney General Richard Blumenthal to revisit guidelines established in 2006 for the diagnosis and treatment of Lyme disease.


In order to avoid conflicts of interest, an independent ombudsman was also appointed to ensure that the review panel's recommendations provide accurate information based on the best available scientific and medical findings.



In a letter to Attorney General Blumenthal, the New Jersey congressman wrote that "there appear to be some strong differences of opinion in the treatment of Lyme disease, and I appreciate that all interested stakeholders will have an opportunity to have their points of view heard through planned public presentations and submission of information as part of the review panel."



A minority group of physicians support the theory of chronic Lyme disease and long-term antibiotic treatments, while the IDSA, with a membership of 8,000 medical specialists, established the guidelines that concluded Lyme disease was not chronic.


Instead, IDSA found that Lyme disease is a short-term illness treatable over a six to eight week period.



"I am committed to working with my colleagues in Congress to take the appropriate action to assist in the prevention, diagnosis and treatment of this devastating disease," Pallone said.


"At a time when significant disagreements exist on treatment, I am hopeful that the panel's final recommendations will give us guidance on how best to proceed so that we can help all of those suffering from Lyme disease."


The New Jersey congressman is also working with the Centers for Disease Control and Prevention
*******************************************

(CDC) to evaluate current programs on prevention, testing and treatment for Lyme disease. ###


uffda big time, working w/CDC and yet won't put our lyme bill on agenda until after NEW PANEL MAKES THEIR RECOMMENDATIONS!!!! [cussing] [loco]

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METALLlC BLUE
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Funding Lyme Disease education, prevention and new -- more reliable testing has NOTHING to do with the disagreement between these parties involving AG Blumenthal, the IDSA, and ILADS. So what the hell is he waiting for?

"I am committed to working with my colleagues in Congress to take the appropriate action to assist in the prevention, diagnosis and treatment of this devastating disease," Pallone said.

And the bill does this:

""improve tests used to diagnose Lyme disease, enhance the public health surveillance systems and improve our public education campaign to prevent new cases of Lyme disease. It also would create an advisory committee on Lyme and other tick-borne diseases.'"

I'm not sure I see a conflict here.

Frank Pallone himself calls this a devastating illness that he's working with his collegues on, but in the same breath, he's waiting for....what? Nothing. He's in someone's pocket.

Not making a choice, is making a choice Frank! Sitting on your *** waiting is how people die. What is he applying for the position of the Grim Reaper now?

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: sbauzys@comcast.net

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daise
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Thank you Tincup and everyone who went to protest on Wednesday. You did your level best.

And it was a viper pit!

dasie [Smile]

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MaryL
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Robin - I'm with you & I'm ready to spill my own blood on the capitol steps.
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