from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
``Crime against Lyme''
NEW ACTIONS!
1. Important, Save the Date!
Thursday November 30, 2006
The Lyme Rights Rally Group (you may remember them from Hartford Rally 2006) requests that you save that day, particularly if you live in the Northeast
� You won't want to miss this opportunity to make your voice heard.
� More details will follow from Lyme Rights Rally Group early next week.
ONGOING ACTIONS!
1. Continue to get signers onto the petition- We are going on 14,000, keep it up!
2. Continue contacts with your local media about Guidelines impact on you/family/friends- You have sent dozens of letters to newspapers and a number have been published. Mention petition please. A number of Guidelines articles have appeared, too.
3. Continue VERY IMPORTANT STILL
Contact (phone/email) all of your FEDERAL legislators: your own US Congressman and your two US Senators by November 15 at Washington, DC office only . The contact should be with current legislator, NOT any newly elected who do not take office until new year (actions may take this session still so need support of current legislators).
Groups should contact all Congressmen within their range (area they cover).
� Tell them how Guidelines impact you/family/friends.
� Tell them CDC has essentially adopted the Guidelines (on their website)
4. Those patients already impacted by new guidelines, a form was sent out online for you to fill out. Thanks to those who have already responded, and if you still want to respond, please email [email protected] for the form. You must have been denied services after Oct 2, 2006 with the Guidelines used as basis.
Keep up the actions please. Thanks!
Posted by Tincup (Member # 5829) on :
K.I.S.S.- The Keep It Simple Stupid Version
1. Save the date, THURSDAY, NOVEMBER 30. We are going on a trip. It is YOUR chance to be heard. Details to follow.
2. Petition, petition, petition- we need 50,000 signatures
3. Contact (phone/email) all of your current FEDERAL legislators by November 15 at their Washington, DC office only. Tell them about BAD guidelines and how they hurt you.
TC, I'm sending this to all my lyme contacts/friends/family...xmas list, etc!
I also added this link for 25-30 STATES WE ORGANIZED FOR YOU EARLIER THIS YEAR!
posted 10-11-2006 02:11 AM -------------------------------------------------------------------------------- To Betty Gordon's folks I emailed our petition tonight to sign for the 50,000 people, etc.,
the below is the CORRECT address IF you want to email IOWA'S STATE SENATORS/REPS!
Sorry I misposted the above link, so showing this here in case any of you need this! I've got to many links going and can't keep track of anything right now. My apology for any inconvenience.
please use ALL of our extra hours of effort for the above link project! thank you!!
I sent to ALL of IOWA'S STATE SENATORS/REPS TONIGHT..EARLY MORNING HOURS!
[ 10. November 2006, 03:10 PM: Message edited by: bettyg ]
Posted by Penn92 (Member # 9207) on :
Here is what I wrote. Hope it's OK...
Dear (whoever),
I am writing to ask that you do everything that you can to pass S1479 which deals with Lyme disease. This is a very serious and growing problem in our Commonwealth, especially in Chester County where I live.
The new Infectious Disease guidelines recently put out will undoubtedly lead to many very sick people as insurance companies use the guidelines to deny coverage to Lyme patients that are currently being treated. Something needs to be done at the Federal level to prevent insurance companies from trumping the good judgement of physicians for the good of their bottom line. The CDC has already put these new IDSA guidelines on their website as the standard of care and already there are many stories of people being denied their antibiotics and other medications because the treatment protocol doesn't follow the new IDSA rules.
I and my two daughters, ages 10 and 8, are all being treated for Lyme and other tick-borne co-infections. As it is, we already have to travel to New Jersey for a doctor because the Lyme literate MDs in our area have waitlists that are more than a year long! We pay out-of-pocket for all physician's visits because the doctors can't afford to be denied payment by the insurance companies. Instead, just to get treatment, we have to take on that financial liability and hope that we'll see our money back in a few months, if the insurance company decides to reimburse us. If this is the case now, imagine how difficult things will be if the insurance company begins denying any reimbursement at all. That is our concern with these new, ill-informed IDSA guidelines.
Please take up this fight for us, the sick and suffering of Pennsylvania and of the entire country. Lyme is a devastating and tenacious enemy that must be stopped quickly. We need our physicians in the field empowered to treat as they believe necessary. The longer one waits to get treated, the more entrenched Lyme becomes. It is a dangerous game that the IDSA is playing with people's lives and health and we need S1479 passed to help us in our fight.
Thank you for your time and God bless you and your family.
I changed the info for my Congressman to say "HR3427". Hopefully we can get this done.
Posted by bettyg (Member # 6147) on :
Penn, great detailed letter plus changing the bil nos. accordingly! Posted by Tincup (Member # 5829) on :
Wow Penn. I am impressed!
I wish I had YOU writing all the letters I need! Good going!!! Very well thought out and presented. .. and heartbreaking as well!
Thank you for taking time to write this letter. It WILL make a difference.
I'm still sitting here saying.. "wow".
Posted by DR. Wiseass (Member # 6777) on :
Hey TC honey -
The date has been SAVED!
However I do not live in the Northeast; I live in the Southwest...and I'm here to say:
IF I CAN DRAG MY TIRED WEARY SICK ARSE FROM TEXAS TO THE NORTHEAST...I'd better be seeing OODLES & GOBS of you Yankees, as well as a sizable representation from you sensible Midwestern folks, you hip West Coasters; and of course, some of my fellow "Suthners"!
Now I mean it. I'm bossy. I'm making lots of effort here, and it is my intention to meet lots of you folks - so you're going to need to be there in order for me to do that. Don't make me hunt you down like a dog!
So let's hear it...
WHO THINKS THEY'LL BE READY, WILLING, & ABLE TO PARTICIPATE IN REALLY IMPORTANT EVENTS ON November 30th?
Roll call -- let's hear it! Who's IN?
Hugs & to the "joiners" -
Posted by Tincup (Member # 5829) on :
Well, I've never seen such a nice invitation.
By golly.. I think I'll go!
This event is so important.. that I am tempted to say if you don't go.. just like if you don't vote...
Don't whine when you have no doctor or no treatment.
NOW is THE time to roll!
Posted by trueblue (Member # 7348) on :
Um... stupid question... Where is it?
I need to be in PA the first week in December. If I can combine things I will try to figure out how.
Lodging might be an issue since traveling is a big thing in and of itself. I am a lovely and pleasant house guest. (Gee, hope someone buys that! )
Posted by trails (Member # 1620) on :
awe man, am i gonna miss it again? having surgery dec 1st. will have to just keep on sending the vibes and doing my part to keep the home fires burning. rock on!
Posted by DR. Wiseass (Member # 6777) on :
Details about location will be forthcoming...just hang on folks.
Those of you undergoing major surgery are excused...
Now for the rest of you - let's hear from those willing to dust off their suitcases!
Where are you?
Be brave. Make a committment on faith to be present! Trust me on this: This is one event you won't want to miss! Why do you think I'm traveling all the way from Texas?
You're presence is not only requested; it is NEEDED! We need every able bodied soul there! It's time to stand up & be counted folks!
Where are you go-getters? Where are the activists? Where are you people that want to be pro-active instead of pro-apathetic ?? (Ouch!??) Which one are you? Active or Passive? A Do-er or just a complainer? (Ouch?!!)
Hugs & for the Pro-Active Folks; for the rest of you!
Posted by Tincup (Member # 5829) on :
Thursday, November 30...
Be ther or be square.
You NEED to be ready to go. This is THE chance to make a difference. Pretty much NOW or NEVER!
It's what we have all been waiting for... so do plan to go when the details are released.
Thanks!
Posted by Penn92 (Member # 9207) on :
quote:Originally posted by Tincup: Wow Penn. I am impressed!
I wish I had YOU writing all the letters I need! Good going!!! Very well thought out and presented. .. and heartbreaking as well!
Thank you for taking time to write this letter. It WILL make a difference.
I'm still sitting here saying.. "wow".
Thanks for the kind words. Yeah, it was a good day that day and my brain was clearer!
I'll be looking for details on the 11/30 event. I'll do my best to be there if I can work the girls school drop-off and pick-up schedule around it.
Posted by AliG (Member # 9734) on :
I'm not sure what we're doing or where we're going, but I'm willing if I'm able.
TrueBlue-
I don't know if It's gonna be anywhere near me, but I could probably make room for you, if you could put up with me and the mess.
Ali
Posted by Cobweb (Member # 10053) on :
I'm up for another adventure with you TC. Do I have to wear a clear trash bag again to be sure everyone sees my Lyme Tee-shirt?
I don't have bail money-but I may be homeless by then so I don't care if I get locked up.
Waiting for details. Yours Truly, CarolcobweB
PS insurance company is denying me Provigil-so I'll bring a pillow. Posted by trueblue (Member # 7348) on :
quote:Originally posted by AliG: I'm not sure what we're doing or where we're going, but I'm willing if I'm able.
TrueBlue-
I don't know if It's gonna be anywhere near me, but I could probably make room for you, if you could put up with me and the mess.
Ali
It could well be within reasonable(I hate to have to define reasonable right now, hahahaha) driving distance, Ali, and thank you for the most generous offer.
I also don't know if I'm able to pull off the traveling and planning in this short a time, I've been trying to work out details in my head and you know how that goes. Ha!
I think I'd have to find a way to as far south as the furthest folks going and try and travel with them. Dunno, that may be MD or DC or something, still quite a haul from here.
So... rolling it around in my mostly empty, squishy brain. I'm gonna try a few people in these parts and see if anyone has a plan or the inclination.
Hey, where's Tony? Isn't he back? He wanted to road trip with me.
Posted by lymedesign (Member # 8791) on :
Hi TC,
Can't wait for the details...don't keep us waiting too long!!!!
Posted by DR. Wiseass (Member # 6777) on :
I think details are coming in just a couple more days....
Who else is willing to commit to this Big Adventure -- just on faith?
Hugs & Posted by FightFireWithWater (Member # 5781) on :
I not only am committing to being there based on the information posted, I've already made travel plans to be in the Northeast that day.
Posted by lymemomtooo (Member # 5396) on :
Do you want "Lymie" to come? Otherwise known as Godzilla Tick. lmt
Posted by humanbeing (Member # 8572) on :
Count me in Posted by kelmo (Member # 8797) on :
Every day that ticks makes it more expensive for a plane flight. My participation is fading by the minute.
Posted by AP (Member # 8430) on :
quote:Originally posted by kelmo: Every day that ticks makes it more expensive for a plane flight. My participation is fading by the minute.
I second that. Seems like everyone is chilling out in this post, chasing their tails.
Posted by sizzled (Member # 1357) on :
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for the rest of you!
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