Topic: FIRST ARTICLE ON RALLY....OVER 100 PROTESTERS
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
May 7, 2008
Lyme disease patients say Pallone stalling bill's progress
By MICHAEL RILEY STAFF WRITER
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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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I was at the protest today, and no, we were not happy with the response of Rep. Pallone.
There were indeed about 100 people there today, one person on IV, a few others in wheel chairs. One man in a wheel chair had a seizure during the protest.
It is hard to gather my thoughts in regards to this event. It was moving to see so many there, and outrageous to hear that our elected political representative was not willing to support his constituents that have been affected by this disease.
Pat Smith spoke eloquently (although I wish I had known that they needed a pa system. i would have gladly brought a microphone and amp, so that everything could all be heard by all).
According to Pat, NJ has had the 3rd highest number of diagnosed lyme cases in the nation. Monmouth County (which is where Long Branch is) is the county the has the 2nd highest number of lyme cases (I am not sure if this is throughout the nation or statewide, and I believe that she means the total reported cases since lyme first become a reportable infection).
As a resident of Monmouth county, it certainly isn't hard to find people that have been infected or affected.
I personally think that it might be good to put some pressure on Rep. Pallone on the part of his constituents. Perhaps if all of us that live within his district write letters to the editors of the Asbury Park Press and the Star Ledger, expressing our discontent that he is not willing to support constituents by supporting legislation that would provide funds for research and education in regards to Lyme.
I personally feel that given his response to date in regards to this legislation, that he does not care about the people that have elected him. Therefore, we should not care enough about him to re-elect him.
And, in regards to today, I think we should thank all that came, especially those for whom it was physically a great hardship.
I'll working on drafting a letter to the editor tonight, and will post when i am done. Perhaps if we get into the local papers, those who are not active in the lyme community but have been adversly affected by this illness will become aware and feel the need to join the fight.
take care. kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I believe he is saying he is delaying the bill, putting it on the back burner pending the outcome of the IDSA/Blumenthal agreement.
The review of the IDSA guidelines, in other words. He is using the Bluementhal agreement as an excuse to table this.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
lymemommy/kp AND ALL OTHERS WHO ATTENDED PROTEST TODAY,
THANK YOU ALL for going on behalf of all of us; in the physical conditions each of you are in, and the financial aspect of gas/etc. to get you there.
so happy OVER 100 there, and as you said KP, it's a shame no one said a PA SYSTEM WAS NEEDED!
i'm looking forward to footage for youtube, etc. of today's event.
WHAT A COP OUT! waiting until the new committee decides things vs. starting OUR LYME HEARINGS NOW! HOG WASH AGAIN.
i'm glad tincup posted elsewhere WHO HIS BIG CONTRIBUTORS ARE WITH MEDICAL DRS. BEING NO. 1 !!!! buy outs again!
OUR $$$ GO FOR OUR LYME TREATMENTS/APPOINTMENTS! **********************************************
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I went yesterday with my good friend who made the following photo show and with my neighbor, her son and mother. Five in all. We thought the Rally itself was successful as far as turnout, etc.
However, I am embarrassed by the actions of Frank Pallone. What kind of man is he? what kind of man cannot sign onto a bill funding research for a Disease that New Jersey ranks third in? What kind of a man can side with criminals akin to the ISDA? No less a criminal himself!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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