Lyme and Tick-Borne Diseases Prevention, Education & Research Act of 2009
LDA, TFL, CALDA hire DC lobbing firm to assist patients' efforts
HISTORY
* At the end of 2008, the 110th Congress ended. In spite of our best efforts during the last Congress and redoubled efforts in the last three months of 2008 to pursue other avenues, all bills not acted upon died, including the Lyme bills. The sponsors agreed to reintroduce in the next Congress.
* 116 House Members from 30 states signed on to cosponsor the House bill during the last session.
CURRENT STATUS
* The 111th Congress convened in January 2009, and the new version of the Lyme bill, HR 1179, was introduced Feb. 25, 2009 by US Representative Christopher Smith of New Jersey [for himself, Mr. Tim Holden (PA), Mr. Bart Stupak (MI), and Mr. Frank Wolfe (VA)].
* To see the bill wording, go to the Lyme Disease Association's newly designed Legislative web site http://cwork.com/ and click on the link marked BILL TEXT
* The bill provides $100 million over 5 years for Lyme disease research, prevention, physician education and the formation of a federal Advisory Committee.
* Congressman Chris Smith carefully reviewed all the past bill language, including committee structure and function, for clarifications, updates, and added a few new additions to make the bill stronger. He took into consideration input from other congressmen and their constituents.
* To see a list of minor changes that were made to the 2009 bill, go to http://cwork.com/ and see BILL TEXT
* The Senate Bill is expected to be introduced shortly.
NEW STRATEGY
* In the fall of 2008, we worked with a lobbyist to develop strategies consisting of a multi-prong initiative which will engage congressmen in additional efforts to get recognition and monies for Lyme disease.
In 2009, the Lyme Disease Association, Time for Lyme, and the California Lyme Disease Association hired a lobbyist to lead the efforts for bill passage and for other avenues in DC.
The firm is the largest independent government affairs firm in Washington, DC.
TAKE ACTION NOW
* Go to LDA's LEGISLATION PAGE http://cwork.com/ for a listing of US House Members and contact information listed by state. A link for sample blurbs and letters is located at the top of the page.
* Please contact your own US House Member (not Senators).
* Tell him/her to sign onto the bill as a co-sponsor.
GOALS
* To add cosponsors and have a hearing on the bill, so it can move to the House floor for a vote.
Thanks to everyone's efforts last year, many more officials became educated about Lyme & tick-borne diseases.
We thank you for your actions and continuing support.
Together, we will get government to focus attention & resources on this disease.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BTW-
There were a number of folks who did all this work.
They are ALL volunteers working to help YOU and your families and have been for a long time.
The amount of work they do is incredible. I thought I was a night owl. I've watched them go go go until exhausted and then some. I have to hide to keep from getting run over. And ALL of them are sick and/or have sick children.
To help you they have done the following and so much more than I'll never know about.....
There is the brand new web site designed and set up to make it easier for patients... a ton of meetings with Congressmen and women that had to be attended ... letter writing.. speech writing and presenting... phone calls... long distance trips on the road... editing... redoing.... sending he, she, it here and there... conference calls... research... more research... and it never ends.
You normally see me here posting THEIR final product (one way I can at least help)....
But it is these behind the scenes folks.. and public ones too.. doing all that work for me and you.
posted
tincup, yep; it's ok with me! so that's why you're grumpy when you get on here at times ... lol you told on yourself ... he he
breaking this up from tincup's post so we can fully realize this ALL VOLUNTEER ARMY WORKING FOR ALL OF US!!
There is the brand new web site designed and set up to make it easier for patients
... a ton of meetings with Congressmen and women that had to be attended
... letter writing
.. speech writing and presenting
... phone calls
... long distance trips on the road
... editing
... redoing
.... sending he, she, it here and there
... conference calls
... research
... more research
... and it never ends.
WOW, that's quite a list, but forward our comments for their dedicated, LABOR OF LOVE to help all lyme/co-infection patients.
but really thank the person for breaking this up for NEUROS like me who are verbal!
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bettyg
Unregistered
posted
i just sent to IOWA'S HR TOM LATHAM...
HR 1179, new LYME disease bill was introduced Feb. 25, 2009 by US Representative Christopher Smith of New Jersey [for himself, Mr. Tim Holden (PA), Mr. Bart Stupak (MI), and Mr. Frank Wolfe (VA)].
The bill provides $100 million over 5 years for Lyme disease research, prevention, physician education and the formation of a federal Advisory Committee.
In 2008, you co-sponsored the previous version no; please sign on again of the 09, HR 1179 version!
We lyme/co-infection patients just want EQUAL TREATMENT like cancer, aids, and HIV patients with their health insurance companies paying "their fair share"!
My/others lyme expenses for treatment, appts., labs, meds, etc. are ALL PAID OUT OF POCKET including going to other states since IOWA DOES NOT HAVE A FULL-TIME LYME LITERATE DR. HERE, who practices the ILADS, INTL. LYME ASSOCIATED DISEASE SOCIETY'S LYME GUIDELINES.
Thank you Tom; I look forward to seeing your name on our lyme bill that has been in congress now 11 years WITHOUT a scheduled hearing to discuss it at all.
MAY 2009 BE THE YEAR IT IS HEARD ON THE FLOOR, APPROVED BY HOUSE AND SENATE, AND SIGNED OFF BY PRES. OBAMA! xox
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It was recently broght to my attention.. and maybe it is because it is late and I'm tired... but I am still laughing...
I heard someone couldn't find the actual bill wording (which is ok- it happens to all of us).
But rather than look for it or ask someone for help, they've accused others of keeping it hidden from everyone ... like there is a deep dark secret or conspiracy going on?
In case there are any other lost souls out there who want to read the bill (and it is encouraged)... the text can be found in a number of locations. Here are just a few.
Keep in mind the Senate bill isn't out yet (hasn't been introduced), so there won't be wording for it at any of the sites until the Senators actually introduce it.
In the action alert it said...
* To see the bill wording, go to the Lyme Disease Association's newly designed Legislative web site http://cwork.com/ and click on the link marked BILL TEXT
* To see the bill wording, go to the Lyme Disease Association's newly designed Legislative web site http://cwork.com/ and click on the link marked BILL TEXT
And to save folks from going nuts by spending their time trying to go back and forth to see any changes that were made during the sprucing up process... heaven forbid we ruin brains in the process of sharing news of a bill...
posted
I emailed Rep. Mike Thompson of California.
Posts: 991 | From California | Registered: Feb 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Let's keep this at the top - I just posted this on General under - This separation can't work - or something like that. I HATE separate Activist sections.
If you have something good you want me to share with the state groups, please send to [email protected] NOT here where I might not see it. Thanks.
***
Do you people know that we have a new Lyme Bill? It's similar to last year's bill, and we are talking about it on Activism. Please come over because activists can't do this alone. Everyone has to do their part.
Are we finally going to have a voice at the federal level as to how funding is allocated? The Advisory Committee gives us a voice for the first time. Please come to Activism and see how you can get involved.
LDA has made it SO EASY even neuroLymies can do it! Go to http://cwork.com/
All of us "activists" will be working on it, but legislators need to hear from their constituents. Let's ROLL! Let's do it like we're doing it for Oprah!
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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bettyg
Unregistered
posted
phyllis, the separation issue you postedin support was about THIS forum; activism!! i could not understand it at all over there ....
also loub posted on 1 of oprah threads that whenever he sees ANY ACTIVISM THREAD IN MEDICAL/ETC., he'll move it promptly back here where it belongs!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey jb...
THANKS! I'll watch for your rep to be added to the list of cosponsors!
posted
up for weekend warriors who read weekends only!!
PLEASE WRITE ON BEHALF OF YOURSELF AND ALL LYME/CO-INFECTION PATIENTS.... big thanks! xox
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I wrote mine asking for co sponsorship. I pray it works.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Pinelady!
THANK YOU!!!
Chip chip here, chip chip there.
Every whack at the big ugly boulder in our way makes a difference.
posted
Just a quicky question. I'm looking at the e-mail forms for contacting House and Senate members in Kansas.
What catagory should I use, Health care or Science and technology?
My issues are Lyme disease bill and the bio-defence lab being built in Hutchinson KS. I'm submitting seperately but they want to know what subject.
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
health care in my opinion; that's what i used xox
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-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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bettyg
Unregistered
posted
PROUDMOM, you are more than welcome and up we go!
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Listen to the supporters go after the duds.
posted
UPDATE! HOT OFF THE PRESS FROM IOWA'S FEDERAL HOUSE REP TOM LATHAM'S OFFICE !! ********************************
Tom Latham's office staff, Aaron Burnett, the head of his HEALTH ISSUES, just called me and we talked 10 minutes about 1 of my latest emails to him!! this is the 1st time tom's DC office has called me!!
this one happened to be i think our ERIC 555's post he put on obama's change.org site where we got many to click on it, etc.
we could add our own or use eric's and then the site was built so it went to ALL OUR FEDERAL SENATORS/HOUSE REPS, and our own state's senators/house reps in our state legislature.
Aaron was calling me to assure me that Tom was aware of the SSDI entitlements for us with lyme disease and trying to be approved for it and all the hoops we had to jump thru to be approved. He would persevere on that area and not let anyone get one past him, etc.
i can't quote verbatim...i wasn't able to type this one as i normally do as i was flabbergasted this man was calling from tom's DC OFFICE vs. our local office which is 1 of his 6 offices in iowa!!
so i asked him what this email was about as i write a heck of alot of emails about lyme disease, etc.
so he told me quickly what it was and i mentioned i had lyme disease and we talked rest of time about that.
i told him to tell tom i was so proud of him for co-sponsoring previous house version and gave him hr 1179 as the NEW house version, and would he please co-sponsor this bill again? he'd pass that along.
"lyme disease is on the forefront here in dc"! ***********************************************
i mentioned last fall that a lyme group had meetings and gave 1 UNDER OUR SKIN & 1 CURE UNKNOWN BOOK for every house rep and senator in dc.
did aaron know if tom has watched the dvd or read the book? DON'T KNOW...WE GET A TON OF STUFF LIKE THAT, and don't have enough time to look at it.
i asked that he ask someone to PLEASE watch dvd and they'd be amazed at what they discover.
he said he's read alot of mail from iowans about lyme disease and what we have gone thru so he was quite aware of thing, but he would ask.
he would also get back to me if he found they didn't have this, etc. ... boy, i thought that was a nice gesture! iowan's are like that you know!!
if you have any questions about anything, give our dc office a call or your local one; we'll help you!! he wasn't in a rush to get me off the phone!!
how about them apples or in this case .... LYMES?
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posted
I was told recently that emails are not read by legislator offices, that snail mail has to go thru some disinfecting process which is slow, that phone calls are the best.
Plus the IDSA has a big campaign against this bill and is asking doctors to write in opposition to it.
Any comments?
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
lou,
i just called our local office for IOWA'S HOUSE REP TOM LATHAM/DC and here is what his staff rep, michelle, said:
EMAILS ARE READ! ***************
she said there was NO disinfecting process for emails, but there is for OLD SNAIL MAIL goes thru disinfecting!!
calls are fine too.
michelle told me that they have even put a different slant on things for LATHAM'S DC OFFICE:
send an email to HER/your local office and ask them to send it to DC office!! they have something set up for LOCAL IOWA CONSTITUENTS GET TOP PRIORITY!!
or if you fill out the online forms required to COPY them; they will see that dc handles quicker!!
lou, i hope this helps you/others. you might just check with your local/closest office for your federal house rep to confirm that !!
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