posted
CALL TO ACTION 2008 #3 (May 20, 2008) Pat Smith, President, Lyme Disease Association, Inc. (LDA) Lyme & Tick-Borne Disease Prevention Education & Research Act of 2007 S-1708 / HR-741
History: As you know, Congressman Pallone has given the IDSA control over the Lyme bill. We must change his mind. The patient call-ins, protests, & great newspaper coverage & flyers in his district have had an impact. We cannot confirm this, but we heard from a doctor who called Mr. Pallone's office that they are discussing the issue in DC now. Congress is in recess next week. IDSA (Infectious Diseases Society of America) does not want your voice heard and has made that clear to Congress. Time has almost run out We must make patient voices heard. You need to be counted.
Don't let IDSA control your health!
IMMEDIATE ACTION REQUIRED:
Who: Individuals, organizations, doctors
Where: Across the US
When: May 21, 22, 23
What: Contact the following (1) Congressman and (2) Committee Staffs
How: Please call them. Second choice fax if there is a listed fax number
Why: The House Health Subcommittee and Senate HELP Committee are where the Lyme disease bills are, and if the Committee chairs do not release the bills for a vote, the bills will die.
1. Call Congressman Frank Pallone (NJ) (P) 202-225-4671 (F) 202-225-9665 Chairman of the House Energy & Commerce Health Subcommittee Sample Phone Blurb I'm calling to ask Congressman Pallone to schedule the Lyme bill for a hearing today! He has made a grave mistake in siding with the IDSA which has been investigated. The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. Mr. Pallone's job is to help patients. (leave your name, address, contact info)
2. Call the US House Health Subcommittee Staff (P) 202-225-2927 Sample Phone Blurb I'm calling to ask the Staff to ask Congressman Pallone to schedule the Lyme bill for a hearing today! He has made a grave mistake in siding with the IDSA which has been investigated. The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. Mr. Pallone's job is to help patients. (leave your name, address, contact info)
3. Call the US Senate HELP Committee Staff (202) 224-5375 Sample Phone Blurb I'm calling to ask the Staff to ask the HELP Committee Chair to schedule the Lyme bill for a hearing today! He has ignored patients and listened to the IDSA which has been investigated. The IDSA Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. (leave your name, address, contact info)
4. Note: Out of respect, we are not asking you to call the office of Senator Kennedy, Chair of the HELP Committee, at this time.
i just called pallone's NJ office speaking to a very nice lady in this office staff of 5 or 6 for 4-5 minutes!!
when i called, i gave her 741, and she asked what no. and lyme bill like she'd HAD NO CALLS PRIOR ... guess i forgot to ask if she'd gotten calls today.
i was nice stating we want our lyme bill on the AGENDA SOON. bill has been there 10.5 years and no one has acted on this for us.
it was WRONG OF PALLONE/COMMITTEE to meet with INFECTIOUS DRS. MAY 2 to discuss this after BLUMENTHAL'S MAY 1 DECISION ON THE ANTI TRUST ACTION!
it's wrong of pallone to have been bought off by medical community to almost $500,000 in lobbyist money.
we lyme patients are NOT going away; you will continue hearing from us. we were quiet before; we are no longer quiet.
she asked for my full name/address/phone no. and i gave it to her.
since i'm from IOWA, she recommended i contact iowa's HOUSE REP TOM LATHAM. i have; LATHAM has written to pallone and ranking member deal just last week! OH! she was surprised on that one!
told her i've contacted ALL my house reps/senators; THEY LISTEN TO ME AND MY LYME CONCERNS!
then i told her i;ve had chronic lyme 38 yrs; 34 yrs. misdiagnosed by 40-50 drs., and lyme has spread everywhere.
she asked if there was anything else as she has a FORM LETTER to make out i wanted to address....
yes, WE WANT TO BE TREATED EQUALLY just like cancer and aids patients who receive health insurance reimbursements.
we lyme patients don't receive reimbursements; we've lost jobs, health insurance, spouses, homes, bankruptcy, etc.
we're NOT asking for anything special....JUST EQUALITY! she did NOT hurry me along.
i used NJ FREE LINE 888 423 1140 ************************************
bettyg Frequent Contributor Member # 6147 posted 21-05-2008 02:22 AM ------------------------------
...daise, i'm going to work on that tomorrow too; my 24 hrs. is up, but since you're having problems, i'll start when my mind is FRESH ... not worn out from sending newbie/llmd info, and answering pms.
mikej gave me permission so i plan on having ALEX'S YOU TUBE VIDEO POSTED in what i write and perhaps a few others!!! great exposure for alex/family .... still trying to get to RIGHT people to help alex and give her ANY TYPE OF QUALITY OF LIFE!! *****************************
i've worked the last 1.5 hours composing and editing this is what i just submitted on MIKE'S BOZ column for all democrates!!!
FRANK PALLONE IS HOLDING "CHRONIC LYME" PATIENTS HOSTAGE!**************************************
For 10.5 long years, chronic lyme patients have had their LYME BILL in congress, and NOTHING to date has been done or acted on!
We have been very patient to date awaiting our turn; but congress doesn't work that way we have recently found out.
We don't have money to pay LOBBYISTS to BUY VOTES from house reps/senators!
So now we are going to become very vocal, and since it's an ELECTION year; you're going to see and hear us everywhere!
NP40 gave you some very insightful comments and 2 links for you to become educated in our CHRONIC LYME WORLD, which we'd rather not be a part of. But the ticks that bite us took those opportunities away from hundreds of thousands of us!
NP40 stated, "Lyme disease and tick-borne co-infections can be extremely debilitating and painful.
Patients can experience major organ complications/failure, paralysis, dementia and occasionally death".
The National Lyme Disease Memorial Park Project is dedicated to all who have experienced the ramifications of Lyme and other tickborne associated diseases.
There have been far too many lyme deaths since they were not correctly and promptly diagnosed and worse yet; the UNDERTREATMENT of lyme by not giving antibiotics long enough to kill the spirochetes that have invaded every orifice of our body!
The below site has the obituaries of every known lyme patient that we are aware of, and added another one who just died yesterday!
There is a very special 14 yr. old girl, Alex Hermstad, from Storm Lake, Iowa, who was perfectly healthy one night going to bed; the next day she couldn't move!
She has been paralzyed and on a ventilator not able to talk for 1.5 years now. She was recently diagnosed with Bartonnella, another tick-borne co-infection.
To date no doctor has been able to get her correctly diagnosed and TREATED correctly for everything that has gone wrong with her to get her on the road to REMISSION!
Alex's Mom, Lori, recently made this 4:44 minute you tube video about Alex.
Please watch this touching video, and ask any doctor friends/family, etc. to WATCH it too in case THEY ARE ABLE TO help Alex/family!! Please create a miracle for Alex/family.
In NP40's post, he gave you the link to listen to Lyme Disease Association President Pat Smith at Pallone's office on May 7, 2008 at their PEACEFUL lyme protest outside his office. Pat is speaking up for Alex and those below in the you tubes noted!!
Under Our Skin documentary preview, 5 minutes long, by Andy Wilson and the finished version premiered last week in NYC !!
Frank Pallone and his complete health sub-committee should be ashamed of themselves for meeting with the IDSA, infectious drs., their lawyers/etc., on May 2, 2008.
They discussed Conn. Attorney General Dick Blumenthal's recent May 1, 2008, decision of their 20-month investigation of ANTI-TRUST VIOLATIONS of IDSA'S 2006 LYME TREATMENT GUIDELINES.
The IDSA was found guilty of many CONFLICTS OF INTEREST; please refer back to NP40's post where he posted the link of the AG's decision/findings!
Then Pallone sat on what IDSA/Pallone and his sub-committee decided May 2 to wait until AFTER their is a NEW committee established to review the 06 guidelines in violation to see what things are agreed upon to change, delete, etc.
They decided this action May 2; but it was at our May 7th scheduled lyme protest that Pallone's NJ staff member announced it to the PRESS that our lyme bill would NOT BE HEARD until after new panel was created and findings determined.
Pallone was TOO CHICKEN to present this himself to the press that day, and gutless to face the music .... telling the over 100 chronic lyme patients who traveled from 4 states to attend in wheelchairs and getting antibiotic IVs attached!
This was thoughtless and irresponsible of Pallone to have waited until May 7th to announce this, and then would NOT give Pat Smith a copy of it while she was there in his NJ office !!
By announcing this promptly May 2, it would have saved these folks great harm to their physical limitations that we all go thru.
COMPLETELY UNACCEPTABLE FRANK!
Then we also learned that the medical community has given Pallone almost $500,000 in lobbyist money for his campaign.
Yep, his vote to listen to IDSA is quite apparent to us chronic lyme patients!! MONEY TALKS!
We don't have the money; we have to PAY OUT OF POCKET FOR OUR APPOINTMENTS, TREATMENTS, LAB WORK, X-RAYS, ETC.
Many of us have reputable health insurance companies but they follow the CDC rules, who follows IDSA and other organizations!
2 years ago I paid $5,000 out of pocket to go to a LLMD, LYME LITERATE MD, out of state plus $1,000 travel expenses since IOWA has NO FULL-TIME CHRONIC LYME LITERATE DRS!
In fact, 15-18 states nationwide do NOT have chronic LLMDS!!! So we are forced to go out of state ... OUT OF NETWORK!
Many of our doctors have OPTED OUT OF MEDICARE, meaning drs. office don't bill medicare. Thus we have NO denied bills from medicare, and then our health insurance companies refuse to reimburse us since NO MEDICARE DENIAL STATEMENTS OCCURRED! HOG WASH BIG TIME! PU !!!
Pallone, as I told your NJ staff woman yesterday, we are NOT asking for anything special ... we just WANT EQUAL TREATMENT LIKE CANCER, HIV/AIDS, and all other diseases!
West Nile Virus, which has very few cases, and BIRD FLU, have received enormous millions of $$ for them, but LYME disease receives a small pittance.
We also have military vets ... past and present with LYME disease who can NOT receive good treatment from a CHRONIC LLMD; the military requires ONLY IDSA treatment.
Remember, IDSA believes there is NO CHRONIC LYME AND TREATS FOR UNDER 30 DAYS, and bingo, you are cured! HOG WASH !!
So our veterans past and present again are being abandoned after their active service for ALL AMERICANS to protect this country and we, the people!
Pallone, please get off your butt and put our lyme bill HR 741 on your agenda THIS WEEK!
My Iowa House Rep Tom Latham, R, wrote you and Ranking Member Deal on May 12, " I respectfully urge that the Subcommittee on Health hold a hearing on the bill, and do everything necesary to move the bill forward in a timely way."
Betty G, IOWA ACTIVIST
leaving now for afternoon; back tonight!!
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Thanks - called. The gentleman i spoke with was extremely nice as well.
He heard me out and took down my name/phone number.
I'll agree that he didn't seem rushed or busy ie. - not enough people calling!!!!
C'mon folks - we can't sit around and wine about how sick we are all the time and then not do our part in helping to change things!
For those that haven't called yet - CALL!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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Cobweb
Unregistered
posted
I sure wish we could get the President to call! How come we're not getting any backing from him?
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