Tincup
Honored Contributor (10K+ posts)
Member # 5829
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) 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 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!
Patients have been ignored. The IDSA members and their Guidelines' settlement is unrelated to the bill which asks for research money and a patient voice. (leave your name, address, contact info)
Note: Out of respect, we are not asking you to call the office of Senator Kennedy, Chair of the HELP Committee, at this time.
posted
....tincup, please edit and add this to your top post; it was omitted!!! click on paper/pencil to add this ok my friend! xox
i used frank's NJ FREE LINE 888 423 1140 ****************************************** others are like me, and LIKE free calls as much as possible!!
**************************************
i just called TUESDAY AFTERNOON 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 will call the othe 2 places in the next day...
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
No can edit... sorry. This is not my work, it was written by someone else.
I am sure folks will see that number though.. thanks for posting.
I just made my calls. I am so stinking tired I could barely speak.. and stumbled most of the way through.
I told them what I've been doing today on behalf of Lyme patients... and asked if they had any suggestions for help for all of us.
Told them I was sorry to call so late but had over 120 emails today.. 6 calls... 3 requests to write up Lyme stuff... talks with editors, etc.
Told them- a different focus on each message.. nothing planned.. just told them how I felt about IDSA and Pallone allowing the bill to sit while another season goes by... and asked that they do SOMETHING to help us.
At night there is an answering machine in Pallone's office. You have a choice of leaving a message to one of 8 people.. by pushing either buttons 1-8.
Can someone add a link to get local reps name & number? One office I called said for everyone to call local reps too evcen if not on the committee.
Posts: 262 | From nj | Registered: Dec 2007
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is the 888# posted for Pallone DC or NJ?
Posts: 262 | From nj | Registered: Dec 2007
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bettyg
Unregistered
posted
.... 1-888 no. is his NEW JERSEY OFFICE! ******************************************
bettyg posted 21-05-2008 02:44 PM ---------------
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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NJ... thanks!
If you go to this website link you'll find the committee members in each state... where there are some.
Please ALSO see the new post in activism about FLYERS that can be distributed nationwide!
These are for calling Pallone and the HELP committee - they support the new action alert.
Thanks, Dancer
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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bettyg
Unregistered
posted
Call the US House Health Subcommittee Staff 202-225-2927 *******************
well, i just called the above no. he took my name/address, and cut me off saying he would log the call for 741. he had another line to answer.
so i called the 3rd no., and they TRANSFERRED me to SAME no. i called above....KENNEDY'S staff no.!!
i explained again why i was calling and he mentioend KENNEDY'S NAME.
i apologized for calling HIS office....THIS IS NOT DIRECT OFFICE NO. FOR KENNEDY.
i explained how sad we all are at his recent news, and wish him the best.
i've had a great deal of respect since 1960s when jack was pres., and i met bro. bobby.
i've enjoyed listening to teddy on cspan for many years.
he appreciated our condolences, etc., and said he'd pass along 741 comments and my other comments too.
you could tell he was touched by my comments, and didn't give me the brush off like 1st call.
note: HE DID SAY, THEY HAVE HAD "MUCH RESISTANCE" TO PUTTING LYME BILLS ON THE AGENDA!! *************************************************
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bettyg
Unregistered
posted
...
i just called all 3 numbers again today; FINALLY got my FREE LONG DISTANCE SERVICE TODAY!! *********************************************
pallone's office was short/sweet. they were cutting me off fast! 1st call there....their FAXT CAME ON!! boy was the annoying, so i held the phone far away when making 2nd call.
health 2nd no. was much better...they were willing to talk a little.
THEY INFORMED ME THERE WAS "NO CUT OFF DATE" TO DECIDE ON PUTTING OUR LYME BILLS ON THE AGENDAS!
LYME BLOGS/BOARDS WERE WRONG ON THIS!! he also said there was a lot of OPPOSITION on this bill. *******************************************
3rd call, i was transferred to another number, really nice woman.
THAT OFFICE HAS "ONE DESIGNATED PERSON WORKING VERY HARD ON THIS BILL RIGHT NOW" !!! I said whatever that person can do for us would be outstanding, and asked her to pass along my final words, "GOD BLESS YOU FOR THIS"!!
opposition very high; i asked if it were all the infectious drs ... YES! *****************************
I told her we just wanted EQUAL TREATMENT!! our lyme bill started out 10.5 years ago in congress and has not moved at all.
2nd phone no. said they just got it in jan. 07...i gave him the quick background on it.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A reminder to keep calling! I just did mine for the day!
posted
i just made my 3 phone calls and HIT PAY DIRT!!!
the 3rd phone no. is where i've been able to find out extra info, and she informed me someone is working on our lyme bills, etc. and PROS/CONS are both calling her.
i asked her if i could email some FACTUAL LYME DISEASE INFO to whoever is working on our bills?
she said that was NOT possible; confidential, BUT she offered hers to me !!!! *********************************
this is what i sent her and copied: PAT SMITH, LDA PRES., and activist Lucy Barnes aka tincup !!
she said she will print out whatever i send her to give to the person assigned to our lyme bill!! *************************************************
Things I'm sending now are: *********************************
1. my 2 LDA brochures typed together...lyme and co-infections plus much more to it; 9 pages!
2. I just noticed this on the LDA site, a new handy dandy tool for folks to use... (of course that is when I get done playing with it).
It is a printable map that shows the total number of reported cases of Lyme per year in each state... and the total number of cases over-all for each state.
Thought it might be of help to those doing research, reports, support group meetings, etc.
Once again Pennsylvania and Maryland are topping the list with the most reported cases of Lyme disease so far this year, with California coming in third. And it's still JANUARY!
In mid-December 2007, the Maryland DHMH reported to legislators that they had over 1,000 new cases they hadn't completed or counted. However, the total for Maryland in 2007 did NOT reflect those extra 1,000 cases. Where did they go?
13 states have already reported cases this year... in JANUARY.... and many are cold weather states.
Colorado, which usually only reports a couple of cases per year, if any, already has one on record.
DC dropped from 62 to 13 cases in one year 06-07. Was one of the 13 cases President Bush's case?
Connecticut dropped again (2006-07)- no doubt due to their new fangled, high dollar reporting system that still isn't working properly.
Florida already has several cases reported so far this year, which is unusual.
Guam, Puerto Rico, South Dakota and Oklahoma were the only ones reporting NO CASES LAST YEAR.
Since reporting began in 1980 we have increased from 120 cases a year to over 20,000 cases per year, nationwide. These figures represent ONLY the reported cases.
According to the CDC, for a more accurate figure multiple the numbers by 10. That will provide you with the CDC 10-fold assessment totals and will show what they believe to be closer to the actual number of cases occurring.
And note: 75-90 percent of people with Lyme are being missed using the current standard tests, according to Hopkins and ILADS studies.
These people have little chance of ever being counted, much less diagnosed and/or treated properly, which can result in hundreds of thousands developing late stage Lyme and possibly becoming disabled or worse in the next few years.
Betty note: I tried printing out the chart, but it goes SIDEWAYS, and tried printing in pages 1, 2, 3; it kept printing page 1 only! So just a warning if others try to do this; use your PRINT REVIEW FIRST which I did, and indicated DIFFERENT pages, but still got page 1 only! I gave up after 8 tries! uffda
please watch these 2 specifically: *************************************** .. http://www.youtube.com/watch?v=W40ZI1nSpX0 4.44 length story about Alex Hermstad, 14, Iowa, paralyzed and on ventilator slowly dying from Bartonnella and other UNKNOWN DISEASES; her daily life being assisted 24/7.
***************** And if you have friends or family in MD, VA, and DC area, send them to see this Lyme disease documentary. UNDER OUR SKIN, will be showing at the SilverDocs Film Festival in Silver Spring, Maryland, from June 17-23.
It is $35, plus appr. $6 for shipping... ********************************************
Kathy, at this time, this is what I can think of to send your staff person working on our lyme bills!
Pat and/or Lucy, etc. MAY send you more good evidence, statistics, etc!
Betty G, Iowa activist
[/B] Pat, Lucy, etc.
If any of you send them things, PLEASE SHOWN THE SPECIFIC THINGS IN THIS POST; this way we will NOT DUPLICATE mailings to them. We want this to HELP OUR LYME BILLS get on agenda!! [/b]
posted
BB, thank you so much for sending them this link that you created and YOU TAPED AT THE PROTEST. WELL DONE MY FRIEND!!! ************************************
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bettyg
Unregistered
posted
... i just made my daily 3 phone calls; here's additional info i was told, if anything!
1st no.
i asked if they had seen the YOU TUBE 4.5 MINUTE "PALLONE PROTEST WITH INTERVIEWS" emailed over the weekend.
this man did NOT know; i asked him to ask him co-workers as i would be calling daily and will ask him again about this.
getting many phone calls; "PALLONE IS AWARE OF THE ISSUES AND HAS "NOT" DECIDED WHAT TO DO YET!" *******************************
2nd phone no. .... many callls being received.
i asked her if they have an email we can send INFORMATION TO; yes!
she said there was OPINIONS ALSO!! **********************************
i have NOT checked this out yet! will later. *******************************
3rd no. ... got different gal than before; she stated they have someone diligently working on it.
i asked her if INTERN 10 received my email over the weekend with info. "she thought so". I ASKED THAT SHE SPECIFICALLY FIND OUT; i want to make sure they are going to right address.
she logged my zip code and state! told her i'd be calling daily....
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bettyg
Unregistered
posted
...HOORAY!! PAY DIRT AGAIN!!!
i just made my daily 3 calls!
1st no. took name/full address; i asked if he was getting as many idsa calls AGAINST our lyme bill; HE HEARS MORE FROM LYME PATIENTS!! but added there are other staff who take phone calls too!
2nd no. ..i gave my name/city/state; I'LL LOG YOUR CALL!
3rd call...THIS IS WHERE WE ARE MAKING PROGRESS!
i got a new woman today; so asked for KATHY who i talked to last week who gave me her EMAIL which i posted above.
new gal transferred me to MEGAN, who i talked to yesterday who remembered me and stating, you will be calling daily!
i asked megan if she asked KATHY if she had received my weekend email with videos on it.
YES, KATHY DID! KATHY SHOWED THEM TO "STAFF PERSON WHO WATCHED THE YOU TUBE VIDEOS I SENT!"!!!
i told megan SHE made my day knowing this staff person assigned our lyme bill HAS ACTUALLY WATCHED them! i so hope no one was lying!
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The
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Pennington,
NJ08534USA http://www.lymenet.org/
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