Over the past year and a half, many of you have taken time from your busy schedules to contact your own Members of Congress and the appropriate Congressional Committee Chairs concerning the fate of the Lyme disease bills and also to present to them Lyme related issues.
You responded with overwhelming support, calling, writing, and meeting with these Members.
Your united support has made a tremendous difference in the way legislators have responded. In my last update, 2008 # 5, I indicated that serious coordinated federal activity was occurring.
Here's a summary of some of that activity:
Congressional Letters of Inquiry:
Our bill sponsors, Congressman Christopher Smith and Senator Christopher Dodd have affirmed their commitment to the Lyme community through their sponsorship and support of the Lyme bills.
Now, Congressman Chris Smith, joined by Congressman from other states, sent a letter to the Secretary Leavitt of Health & Human Services requesting two things:
1. that the IDSA Guidelines be removed from the Centers for Disease Control & Prevention (CDC) website
2. that the ``inaccurate information on the internet'' article citing almost all Lyme disease groups (except ALDF) as providing inaccurate Lyme disease information on their websites also be removed from the CDC website (9-10-08).
Congressman Smith had written prior letters to CDC requesting such action (as had LDA and its associated organizations). Senator Chris Dodd directed his letter to CDC itself and asked for the Guidelines' removal.
Additionally, (9-11-08) Congressman Chris Smith, with other Congressmen signing on, wrote to the Office of Health & Human Services (HHS), Secretary Leavitt, requesting that HHS look into a lack of transparency in HHS agencies, in particular, the role of the CDC in attending what is in effect a ``closed'' Lyme disease conference where a Lyme disease research agenda will be discussed (11th International Conference on Lyme Borreliosis and Other Tick-borne Diseases).
In August 2008, Congressman Chris Smith sent a well documented letter, with several other Congressmen signing on board, to the Office of the Inspector General (OIG), requesting a full fledged investigation into what appear to be serious issues with federal agencies regarding Lyme and other tick-borne diseases.
Congressional Science Briefings:
In April 2008, Senator Dodd invited the LDA and Dr. Brian Fallon to present a scientific briefing to the Senate HELP Committee, where the bill resides.
The House Lyme Disease Caucus assisted the LDA in arranging a briefing for House Members the same day.
Due to IDSA's lobbying in DC (telling Congress that there is NO science behind chronic Lyme disease), we were advised to hold another House briefing after Congress returned from summer recess, and on September 8, 2008, with the help of Lyme Caucus Co-Chair Christopher Smith, LDA held a well attended scientific briefing of House staffers featuring Dr. Ken Liegner, who presented literature documenting the persistence of the Lyme disease bacterium in the body after treatment.
His 20+ years of experience in the field and his CDC-documented case of such a patient enabled a very focused discussion of the science.
As a result, 2 new co sponsors signed onto HR 741.
FYI, we have heard that there may be a ``lame duck'' session after the November election, so we are working very hard to continue the plan we have in place to get the Lyme disease bills passed. We'll keep you apprised of any actions to take.
Please understand that efforts to pass the Lyme bills are ongoing & may go into the next Congress.
Other federal information:
The CDC has been actively building bridges with the Lyme community starting with my visit last year to the CDC in Fort Collins, CO, where I spoke to the Vector-Borne Division about the state of Lyme and tick-borne diseases.
The CDC continued outreach one month ago in Ridgefield, CT where CDC members met with members of the community coordinated through the Ridgefield Lyme Disease Task Force.
Several CDC employees listened to concerns from residents and advocates.
Last week, a senior member of the CDC met with CT based Time for Lyme (TFL), [LDA affiliate] where several meetings took place over 2 days in Connecticut.
Besides the TFL boards, one of the meetings hosted by TFL Co-Presidents, Diane Blanchard and Deb Siciliano, included a number of Connecticut advocacy group leaders and me.
Our concerns were expressed including surveillance, education, and treatment issues.
This meeting was followed by a meeting with the CT Attorney General.
We all know that continuing dialogue is absolutely necessary to resolve our differences.
CDC is also partnering with the Greenwich Red Cross and TFL to distribute tick removal kits which TFL developed in conjunction with the Red Cross.
As always, we encourage patients to contact their Congressional representatives with their personal stories or any Lyme related problems they have experienced.
If you wish to continue educating Congress regarding a need for the bills (HR 741/S1708), you can go to the LDA website
Once you locate your representatives' contact information and note any updates posted on the site, feel free to contact your representatives, especially about the need to support the bills.
Your input is crucial and making a huge difference!
posted
This is very welcome news and thanks to all those who made it possible. Maybe one of these days lyme patients will no longer be trashed by their govt health agencies, will be helped instead.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
1. that the IDSA Guidelines be removed from the Centers for Disease Control & Prevention (CDC) website
2. that the ``inaccurate information on the internet'' article citing almost all Lyme disease groups (except ALDF) as providing inaccurate Lyme disease information on their websites also be removed from the CDC website (9-10-08).
Makes me smile!!!! Thanks to everyone who worked on this. Let's keep the pressure on!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My heartfelt thanks to everyone who fights the battle for us everyday!! Thank you for everything you do!! Posts: 136 | From North Carolina | Registered: Apr 2007
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bettyg
Unregistered
posted
to pat smith, lda staff, tincup, and to sen. chris dodd and rep chris smith !!!!
wow, what wonderful, POWEWFUL/POSITIVE NEWS!
tc, i can see now why we couldn't wipe that smile off your face!!!
i was really impressed by what i've read in the specific areas they addressed. sending this to all on my LYME LIST GROUPS; hope you do the same!!!
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bettyg
Unregistered
posted
tincup,
one favor to ask please ... could you show todays date 9-18 in subject line since we get quite a few alerts, and this helps us to know it's the most CURRENT one in action!
just click on pencil to open up subject line .... big thanks to my friend!
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posted
Sounds good! Thx to everyone for your efforts to bring about saner Lyme policies! Any idea when we might be hearing back from the CDC about these requests?
Posts: 13116 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin 456567877889...
You said.. "Any idea when we might be hearing back from the CDC about these requests?"
From what I remeber.. and I DO have Lyme so keep that in mind...
It took them a few months to answer when Congress wasn't doing it before. In other words, when it came from anyone else but Congress it was super slow. I believe it was more like 6 weeks when Congress has written them in the past.
Don't hold me to that time frame... I am simply trying to guess and remember. I am hoping we will be getting more of these updates. I've been pushing for them so patients get some news of what is being done. I think it is nice to know.
I like it anyhow... hope you do too! And this is only a TINY part of what is going on in the back ground. There is just so much activity that no one has time left over to put it all together in this format and share it.
I'll try to respond to others posts later. Not ignoring you.. just busy and berry berry tired tonight.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I can't IMAGINE why you were tired last night!
I hope you were able to get some good rest.
This certainly IS encouraging news. Thanks to ALL who were instrumental & thanks to YOU Tincup, for pushing to get us something to read to give us hope.
I hope we'll get a favorable response on those letters ASAP.
I'm also glad to know we've gotten some more co-sponsors aboard.
I'm so happy that we're getting some EARS!!!
I had checked IDSA's site and it looks like they really are getting very busy in the political arena.
I'm sure they feel threatened and are trying to save their reputation.
I think it would be REALLY great if they would BOOT those responsible for their Lyme Disease nonsense AND ACTUALLY INVESTIGATE this, not just try to protect those degenerates.
IMO, IDSA needs to try to make up for the damage those people have caused by getting serious about this guideline review, if they are to stand any chance of saving face as an organization.
If they are to save their reputation, they are going to have to do some really fancy footwork because, when ALL are aware of what's really been happening, they MAY find a lot of members jumping ship to keep from losing their patients to non-members.
Might any of these "EARS" that we have do something for us about the insurance companies trying to subject us to pointless torture (LP's for inaccurate CSF testing) or demeaning Neuropsych evaluation (interviewing patient, FAMILY MEMBERS & EMPLOYERS?!!! who have NO medical background) to make a patient "PROVE" neuroborreliosis in order to continue covering Tx?
I thought this was supposed to be a clinical diagnosis. This practice is just SO WRONG on SO MANY LEVELS!
How do insurance doctors, who've never even met you face-to-face in a clinical setting, get to DEMAND these things as evidence for continuing coverage of treatment?
When "clinical diagnosis" is the MOST important determination and a positive test is pretty much just a "bonus", your professionally-trained, clinically-experienced, in the trenches, Lyme-treating doctor (who has been evaluating your progress all along) has determined that the Tx is of medical necessity, HOW DO THEY GET TO SECOND-GUESS HIS ASSESSMENT BY REQUIRING INACCURATE or SUBJECTIVE TESTS?!!!!
Sorry for the rant. I'm a bit fired up today.
This IS such GREAT NEWS that we ARE making progress!
Now is a perfect time for ALL sufferers to get even MORE aggressive with trying to help make our voices heard.
We catch more flies with honey so it's probably good to try to be polite and respectful, but "persistence DOES PAY OFF" and the "squeaky wheel gets the grease".
We can't let all the squeaks of IDSA drown us out.
If any of us haven't already, this is a good time to get stories of medical mistreatment due to unjustifiable guidelines & concerns about current ignorance in medicine to our politicians on EVERY LEVEL.
For those who have, this may be a good time to DO IT AGAIN!
I'm guessing that my present frustration & disgust with my insurance company's denial of my IV extension may have actually come at a good time for our cause.
I think it's time for me to cry about this latest frustration to some politicians AND perhaps some newspapers.
While I'm very happy & encouraged by the news that we are making headway , I'm still FRUSTRATED by the feeling that I have to bang my head against a wall trying to get adequate treatment!
Thanks again for staying up to get me(us) this news yesterday morning. I was in a pretty dark place from the days before and REALLY, REALLY needed this!
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning babbling brook. HA!
(That was a term of endearment by the way.. not a slur)
You ARE fired up! GOOD to see that!
You said.. "Might any of these "EARS" that we have do something for us about the insurance companies trying to ... in order to continue covering Tx?"
Actually... one of the "projects" I've been working on was addressing this situation directly. The results will be published this fall by someone with a more "respectable" sounding name than Tincup.
However, if you email me, I will try to help you. And please note- as we speak I can't respond to emails. (Software problem- so hang in there)
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Awesome, awesome, awesome!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Tincup: Good morning babbling brook. HA!
I know you are, but what am I!
quote: Actually... one of the "projects" I've been working on was addressing this situation directly. The results will be published this fall by someone with a more "respectable" sounding name than Tincup.
E..G..G..cellent!!!
quote: However, if you email me, I will try to help you. And please note- as we speak I can't respond to emails. (Software problem- so hang in there)
AGAIN with the Tinny Teaserpantsness?
E-mail me, but I won't get it? NICE!
I just finished sending an e-mail to Mike Duncan, the Chairman of the Republic National Committee, urging him to have McCain & Palin give consideration to our plight and the possible impact that their NON-co-sponsorship of S.1708 might have on this election.
I also mentioned that the HIGHLY-ENDEMIC state of NJ typically gets more votes for DEMOCRATIC candidates. Hmmmmm....could this factor in?
I blah-blahed about IDSA and Health Insurance Companies and PALLONE. I even pondered whether the IDSA authors are Democrats.
NOT ONCE DID I MENTION LYME DISEASE!!!!!!
I figured that they can look at the bills I've mentioned if they don't know what I'm talking about.
I think I also wrote enough that, if he DOESN'T know what I'm talking about, he should be inspired to at least find out.
I also included a list of the Co-sponsors & bolded Clinton & Obama.
I also asked to not be insulted by a form-letter "cheerleading" response that tries to encourage me to vote for those candidates without addressing any of my concerns.
Fired up? Just a weeeeee bit.
I'm trying to put it to good use.......so SeeeeYa!!!! I'm off to find another place to vent!
Ooops...I almost forgot I have to find out about the IV stuff & try to deal with the insurance nonsense.
I think that was a good and HOPEFULLY useful diversion though!
-------------------- 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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posted
A huge Thank You to everyone who puts so much effort into winning this horrible battle!!
Thank you!!
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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bettyg
Unregistered
posted
ali, i was going to refer you to tincup about this special project she mentioned in her written post above!
ali, YOU ROCK GIRL; gotta get you fired up more often!!! kudos for writing mccain/palin !!
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Thanks Betty!
You're speaking about approaching Obama's campaign was actually my inspiration!
I'm not "connected" but figured I'd give it a shot anyway.
-------------------- 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 glad i inspired you; i've got to get my stuff together tonight or when i get up before my late afternoon 2 hr. shift.
you've heard me say this before many times....work both parties! i'll hit obama; you have mccain already!! well done my friend!
i'll have to go back and read what you all said earlier today; can't remember a thing.
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Tincup,
Please let me know when your e-mail is working and let me know what you need from me.
I'll be glad to send you whatever you need.
The "MD director" responsible for my denial was Dr. Ebben Smith. I don't know if that's helpful, but I figured I'd throw it out there.
Betty-
I thought of an angle. How can we figure out which states tend to go Dem & which go Rep?
We can tell them to look at the CDC map for "Lyme Disease alone, without even taking into consideration all the other(list) coinfections and multiply by ten "dots", more if the map isn't current.
If they would want/need states (opposing or "swing" states) that would then be "in the black" on the map, that might be a quick and easy way to convince them to make a big deal about TBDs in their campaign.
If we are both working on them & ONE picks it up, I'd hope the other would follow.
Even if they didn't continue to pursue it aggressively in office, the publicity would still help US.
If we sound like we are concerned for THEM and want to help them get in, I think we stand a better chance of not ending up in the trash and receiving those stupid campaign form-letters.
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
AliG.. will read and get back to you... sorry not now. On my way out. But wanted to say (or rub it in- cause I know how you LOVE it)...
MORE news is coming out right now... as we speak. A done deal I believe from last week... but still teetering on the edge with it.
And ya know what? I can't TELL you!
Nah nah nah nah nah
No.. actually... I wish SO MUCH I could but it is still "fragile"... and needs to be finalized... but more good news MIGHT be the big topic this week. Many people have been working hard... and things are moving along.
Let me also say.. I have been encouraging the release of LDA news to the public after we get it... but sometimes other bad eyes are watching.
So when we get close to an accomplishment.. I get excited and want YOU all to be happy too and to feel the joy. But PLEASE understand...
One wrong step at the wrong time... and all could go down the drain... and we would all suffer. So DO know I don't tease on purpose... till now nah nah nah...
I just know how good it feels to have some hope and good things coming through in light of all the bad we see and deal with daily.... so I am trying to keep my spirits up and others too.
And I don't want folks to think nothing is being done.. because it is. There are lots of ongoing projects. All take time... way too much time if you ask me.. but that is the way the cookie crumbles.
Also note- for every good bit of news... you won't believe the bad that is thrown in there too. Sometimes crushing news. Sometimes we feel we've lost everything.
But we pick up the pieces and keep pushing... hoping and praying and working to get good news to counter it.
We've all lived for soooooooooooooooo long with nothing but bad news.. so any good news.. or the possibility of it.. is what keeps us trying so hard.
And is what keeps ME going.
Back later. I think the boys are cooking a cake downstarirs. Or trying to cook something. No smoke alarm yet.. but ... oops... smoke alarm...
posted
tincup, thanks for the most recent news of another house rep leonard boswell CO-SPONSORING HR 741 !! whoopie! great way to find it out.
you really know how to introduce a subject!! lol
ali, outstnding idea; i'll give that more thought and see about finding a red/blue map; if nothing else, i'll go to CNN NEWS; they show theirs all the time!! betty
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BG... You've been beating the path for action and you got it!
Thanks again!!! Good work!!!
AliG...
You have been busy too... oh my! Good for you! Thanks for taking time to write and do that work! MUCH appreciated.
You can email me... just to remind me to send insurance fight info. Hope it will help. I don't need anything from you... other than the email so I can get your email address to respond to.
I THINK my emails are working? Incoming was doing ok.. but outgoing is still having problems. But give it the old Lyme try!
I will once again try to come back to comment on others posts.. but am fading fast again.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
It ****es me off when you consider that the IDSA has some of the early researching proving chrnic Lyme! Proving it! Yet, they hide it. The writier of 'Cure Unknown' even has some of this on tape with them saying this!!!!! The belief is now that it is all about money, they feel it is too expensive to reat or pointless to treat, meaing that it makes no difference.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote: MORE news is coming out right now... as we speak. A done deal I believe from last week... but still teetering on the edge with it.
And ya know what? I can't TELL you!
Nah nah nah nah nah
[razz]
whyyyyyyyooooou..... . . . TEASERPANTS!!!!!!!
Tinny Teaserpants strikes AGAIN!!!! LOL
I'm still somewhat encouraged by the last good news so I can wait a LITTLE bit for more.
Just don't wait TOO long or I may have to bonk your head INSTEAD of my own!!!
I've actually sent you e-mails before & gotten no answer. I just realized that maybe I've been forgetting to tell you that it's me "AliG". DUH(me)!
Now WHY couldn't you just READ MY MIND?!!!!!
I'll send another....
I do hope whatever the "boys" were making turned out to be edible.
-------------------- 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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