CA office: Phone: (323) 651-1040 Fax: (323) 655-0502
Members of the House Appropriations Committee
Democrats
David R. Obey, Wisconsin, Chairman
John P. Murtha, Pennsylvania
Norman D. Dicks, Washington
Alan B. Mollohan, West Virginia
Marcy Kaptur, Ohio
Peter J. Visclosky, Indiana
Nita M. Lowey, New York
Jos� E. Serrano, New York
Rosa L. DeLauro, Connecticut
James P. Moran, Virginia
John W. Olver, Massachusetts
Ed Pastor, Arizona
David E. Price, North Carolina
Chet Edwards, Texas
Patrick J. Kennedy, Rhode Island
Maurice D. Hinchey, New York
Lucille Roybal-Allard, California
Sam Farr, California
Jesse L. Jackson, Jr., Illinois
Carolyn C. Kilpatrick, Michigan
Allen Boyd, Florida
Chaka Fattah, Pennsylvania
Steven R. Rothman, New Jersey
Sanford D. Bishop Jr., Georgia
Marion Berry, Arkansas
Barbara Lee, California
Adam Schiff, California
Michael Honda, California
Betty McCollum, Minnesota
Steve Israel, New York
Tim Ryan, Ohio
C.A "Dutch" Ruppersberger, Maryland
Ben Chandler, Kentucky
Debbie Wasserman Schultz, Florida
Ciro Rodriguez, Texas
Lincoln Davis, Tennessee
John T. Salazar, Colorado
Republicans
Jerry Lewis, California, Ranking Member
C.W. Bill Young, Florida
Harold Rogers, Kentucky
Frank R. Wolf, Virginia
Jack Kingston, Georgia
Rodney P. Frelinghuysen, New Jersey
Todd Tiahrt, Kansas
Zach Wamp, Tennessee
Tom Latham, Iowa
Robert B.Aderholt, Alabama
Jo Ann Emerson, Missouri
Kay Granger, Texas
Michael K. Simpson, Idaho
John Abney Culberson, Texas
Mark Steven Kirk, Illinois
Ander Crenshaw, Florida
Dennis R. Rehberg, Montana
John R. Carter, Texas
Rodney Alexander, Louisiana
Ken Calvert, California
Jo Bonner, Alabama
Steven C. LaTourette, Ohio
Tom Cole, Oklahoma
Sample Letters and phone contact to both House and Senate in support of H.R. 1179 and the matching bill soon to be introduced on Senate floor (Thank you LDA)
SAMPLE phone blurb when asking House Members for bill support.
I am calling to urge the Congressman/woman to co-sponsor HR 1179, the Lyme & Tick-Borne Diseases Bill.
Lyme diseasae has become an epidemic spreading across the country, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor HR 1179 today. Thank you (Give your name, address, phone number)
SAMPLE phone blurb when asking Senate Members for bill support.
I am calling to urge the Senator to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced by Senator Dodd.
Lyme diseasae has become an epidemic spreading across the country, we are sick, the tests aren't accurate, and we need a cure! Patients, and those who treat them, also need a voice in this process. Only you have the power to make that happen. Please sign on to co-sponsor the Lyme & Tick-Borne Diseases Bill when it is introduced. Thank you (Give your name, address, phone number)
Phone calls are better than letters but letters are still great!
I think some key talking points with aides would be to:
1.) Briefly tell your tale...how many docs you've seen, how many misdiagnoses, how much money you've spent, your current situation
2.) Ask them if they can find out some of the answers to the common questions we all have...
~Why don't we have more accurate testing?
~Why are doctors either so ignorant and/ or arrogant about Lyme diagnosing and treating? Why is it so hard to get an early diagnosis before real long-term damage occurs?
~Why do the IDSA guidelines supersede what perfectly good clinicians are finding in their practices that are in direct conflict with the guidelines?
~Why were the guidelines even published without the input of frontline treating physicians?
~Why did the IDSA opt to settle the Atty.General of CT's case against them instead of standing behind the truth and weight of their scientific evidence...if it is SO accurate and the end all be all of everything Lyme as they would have us all believe?
~Don't patients have any rights to have all facts, thoughts and opinions about Lyme explained to them and then decide with their doctor what treatment is best for them? And why are the doctors who do go beyond the IDSA guidelines to help their very sick patients get persecuted and threatened?
~Why are insurance companies allowed to deny treatment based on guidelines that are questionable and were under investigation?
~How are we going to protect our children and grandchildren from this epidemic when their playgrounds, bike paths, schoolyards, state and national parks and even their own backyards are becoming more and more likely places for infection to occur with each passing day?
~There are studies that have found live spirochetes in not only blood and spinal fluids but also in every other fluid in the body...semen, saliva, urine,etc...Why isn't there money for more research into these possible forms of transmission?
~Are our blood supplies safe? It has been proven that Lyme can be acquired through transfusions? Why are they not screening donated blood for Lyme?
3.) Break out your facts sheet and kind of do a ...Did you know that....yada yada yada.
Try to keep this as conversational as possible...try something like...
"And I just learned from this study (quote the study as accurately as possible please) that such and such...Can you believe this stuff? I was stunned and alarmed to say the least..."And so on...
Always try to leave the conversation on a friendly note and in a way that you can call back for updates from whomever you spoke with...
Remember***
We need to educate the aides of these Congress people so when the IDSA lobbyists come to chat with them as well, they can be armed with the right tools to put them and their science on the spot.
And that is exactly what the doctor ordered!
Good Luck! And thank you in advance for helping!
SAMPLE letter when asking House Members for bill support.
Your first & last name
Month, day, year
Dear Congressman xxxx:
Please co-sponsor the ``Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009'' (HR-1179). The Senate version is expected to be introduced shortly.
Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from an infected tick. The problem that exists today, however, is much more than just Lyme disease. There are many diseases (some life-threatening) carried by ticks that can complicate the diagnosis, treatment and ability to recover once a patient has been exposed, e.g. babesiosis, Rocky Mountain spotted fever, Southern Tick Associated Rash Illness (STARI), ehrlichiosis, anaplasmosis, Tularemia, and bartonellosis.
In humans, infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. Lyme is called the ``great imitator,'' because it can mimic MS, ALS, fibromyalgia, lupus, chronic fatigue, Parkinson's, Alzheimer's, and even autism. On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed. At the highest risk of acquiring this horrible disease are our children, ages 5-14.
The CDC states Lyme disease is still vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. That translates into more than a quarter of a million new cases of Lyme disease each year.
The medical resources available to help our family members, friends and neighbors with Lyme disease are far from adequate. For example, a person with Lyme can test negative and still have the disease. Treating doctors think tests miss 50 % or more of patients. Research funding, as provided for in this bill, could lead to the development of more accurate diagnostic tests.
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding. Mothers and fathers are losing their jobs and their homes and many seek disability because they cannot get treatment. The federal government is footing the bill for many of the chronic cases that slip through the current system and the numbers continue to grow.
Federal legislation is important because it will open the door for more opinions and unbiased research to get to the real answers. Please cosponsor this bill today and actively promote it to your colleagues.
Sincerely,
Your name
SAMPLE letter when asking Senate Members for bill support.
Your first & last name
Month, day, year
Dear Congressman xxxx:
Please co-sponsor the ``Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009'' . The Senate version is expected to be introduced shortly.
Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from an infected tick. The problem that exists today, however, is much more than just Lyme disease. There are many diseases (some life-threatening) carried by ticks that can complicate the diagnosis, treatment and ability to recover once a patient has been exposed, e.g. babesiosis, Rocky Mountain spotted fever, Southern Tick Associated Rash Illness (STARI), ehrlichiosis, anaplasmosis, Tularemia, and bartonellosis.
In humans, infection with Lyme disease bacteria alone can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.
The Lyme disease bacterium has the ability to enter the brain less than 24 hours after a tick bite. Lyme is called the ``great imitator,'' because it can mimic MS, ALS, fibromyalgia, lupus, chronic fatigue, Parkinson's, Alzheimer's, and even autism. On average, patients with chronic Lyme disease had symptoms for 1.2 years before being correctly diagnosed. At the highest risk of acquiring this horrible disease are our children, ages 5-14.
The CDC states Lyme disease is still vastly underreported, with only 10% of cases that meet its surveillance criteria being recorded. That translates into more than a quarter of a million new cases of Lyme disease each year.
The medical resources available to help our family members, friends and neighbors with Lyme disease are far from adequate. For example, a person with Lyme can test negative and still have the disease. Treating doctors think tests miss 50 % or more of patients. Research funding, as provided for in this bill, could lead to the development of more accurate diagnostic tests.
The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding. Mothers and fathers are losing their jobs and their homes and many seek disability because they cannot get treatment. The federal government is footing the bill for many of the chronic cases that slip through the current system and the numbers continue to grow.
Federal legislation is important because it will open the door for more opinions and unbiased research to get to the real answers. Please cosponsor this bill as soon as it it introduced and actively promote it to your colleagues.
Sincerely,
Your name
**************************
THIS IS WHAT I DID LAST THURS. & FRIDAY !!
i called 39 members of ENERGY COMMISSION who has our HR 1179 lyme bill asking them all to CO-SPONSOR our bill with this info:
i've had chronic lyme 39 yrs; 34.5 yrs. misdiagnosed by 40-50 drs....most were so sorry to hear that!
gave them my/our 3 brief lyme issues:
1. we want 100% accurate blood test to diagnose lyme.
2. blood supply; we want them to test for LYME & ALL CO-INFECTIONS which isn't being done. fyi; 1 man thought i said COLON INFECTIONS! had to laugh on that one.
3. our health insurance companies are denying us reimbursement for lyme expenses since they are using 06 infectious drs. lyme guidelines since they excluded scientists and our chronic lyme literate mds in the decision process.
almost all let me give all the above with my name/address, and 1 even asked my phone no....a FIRST for me!
only 1 rude woman who would not take any info; my name or issues.
another woman said we were called by 1 person earlier that day and didn't need anything from me.
ILLINOIS WOMAN HAS SIGNED AS CO-SPONSOR since her constituents contacted her many times & met with her! SO IF YOU CALL HER, THANK HER FOR BEING A CO-SPONSOR!! we don't need to sell our stories to her
for a person like me with DRY MOUTH; what a challenge that was calling 20 daily, and drinking as much water as possible.
posted
Good job. These are the people to go after on cosponsoring the lyme legislation. They need to be educated. Visits by constituents when reps are home in district offices are GREAT.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
lou, yes, i love your idea for those living in the states WHO HAVE FOLKS ON THIS COMMITTEE, visit their DISTRICT OFFICES!!
a face to go with their name and stories!! brilliant lou!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I recall Rep Wolf threatening Pallone, last year, that he was going to take it up in appropriations if he didn't act on it soon.
I should call and ask Rep. Holt why I don't see HIM yelling at Pallone. He co-sponsored HR741 but, if he lives anywhere around here, he should be mad as heck at Pallone's ignorant arrogance too!
I'll have to ask when I make the follow up call to the letter I just sent him.
Great list Betty/Kristy. I guess I'd better get busy. There's just not enough hours in the day.......
-------------------- 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. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
hi ali,
yes iowa's tom latham is on the FULL committee; our local office sent me the names of each of them with their DIRECT link on it.
i'm guessing kristy and others are working now on a future list for the rest of the 60 additional people on this list:
names, DC phones/fax and a local office no.!! BIG JOB! *********************************************
ali, thanks for writing too!! you've done your bit; let someone else who doesn't want to email CALL! make it a 50-50; and spread out the duty assignments to make it manageable for all involved.
it actually should be WOMANageable! lol
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bettyg
Unregistered
posted
i'll copy the FULL committee here and also to my post at top of forum!!
this info came IOWA'S TOM LATHAM'S LOCAL DISTRICT OFFICE HERE IN MY CITY! so it's correct info betty
Democrats ************
David R. Obey, Wisconsin, Chairman -------------------------------------------------
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Betty
In the title, you refer to the Energy Subcommittee. I'm not sure if you meant the Health Subcommittee, which is a subcommittee of the Energy and Commerce Committee?
-------------------- 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. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
ali, i'm just as confused with you! i don't know ??
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bettyg
Unregistered
posted
ALI,
here's what the subject line was BACK from iowa's house rep latham's office ....
"ALL" House "Appropriations" Committee Members ********************************************************
does that clarify it for you; i'm in lyme fog...
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bettyg
Unregistered
posted
fyi ... Editor's Note:
The Senate is in recess until Monday, June 1. The
House is in recess until Tuesday, June 2.
suggesting this would be good time to call their offices again to CO-SPONSOR HR 1179 !!
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bettyg
Unregistered
posted
grandma,
carrier pigeon that was a good one.
the above list was compiled by kristy and her mom, members of mdjunction.org 's lyme board. that was their decision.
it was good info, so i copied it from THERE over here so we all can working as a TEAM to accomplish this.
good idea for email too! glad you showed the main link, and then they can find their federal house reps
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