Please take a minute and write a letter to your state representatives and senators in support of this bill. Also, write to the governor and lt. governor. It will take five minutes or less. Write one letter, then cut and paste to everyone. Keep it short and to the point. Please, this is very important as they do not yet have enough support.
It was suggested to me, that residents should include in their letters the fact that this bill will help provide Lyme patients access to physicians, while NOT adding a dime to the state budget. Zero budgetary impact.
There is a CT govt website, and all the state officials' emails can easily be found.
posted
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Posts: 845 | From Eastern USA | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey no mo...
I know some folks are working on putting together a plan after meeting with some legislators- spoke to them yesterday ... and wasn't sure if this was sent out by them or not?
From what I understand there may be other things to do too .... so have you heard officially yet from those who have been working on the bill or is this just a good idea ahead of any announcements?
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I wrote mine. Here is a template if anyone wants to use it.
Honorable Richard E. Neal, My name is Michael Parent, and I have a concern of interest regarding the current debate on Chronic Lyme Disease. At present, the Infectious Disease Society Of America (IDSA) has produced guidelines that deny the existence of the illness in-spite of patients around the Springfield Massachusetts and suburban towns remaining ill after being infected by ticks in the area. If these patients are diagnosed, they receive a standard course of antibiotics as recommended by the IDSA treatment guidelines. If these patients remain ill after a short course of treatment -- which is quite common, they are denied further treatment either by the physician, or by the unwillingness of their medical insurance provider to pay for treatment.
Currently, the guidelines that the IDSA produced in 2006 are being contested after Attorney General Richard Blumenthal launched an anti-trust suit against the non-profit organization, concluding his two year investigation in May of last year. AG Blumenthal documented extensive conflicts of interest involving the panel members who produced the guidelines, citing that the authors ignored dissenting scientific points of view and a body of substantial evidence indicating that chronic infection does in-fact seem to be a problem. The Attorney General states on the ct.gov/ag website:
May 1st 2008: "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion. In today's healthcare system, clinical practice guidelines have tremendous influence on the marketing of medical services and products, insurance reimbursements and treatment decisions. As a result, medical societies that publish such guidelines have a legal and moral duty to use exacting safeguards and scientific standards."
Currently legislation is being presented in Connecticut fostered by State Representative Kimberly Fawcett, and supported by most representatives in the state, which would permit physicians who treat Lyme Disease to do so based on their own judgment without fear of persecution by insurance companies who report their conduct to state medical boards when they deviate from the IDSA guidelines. As you now know, you can see by Blumenthal's investigation the IDSA guidelines are setting a standard which deny patients with the illness to receive further care by doctors in the area. As is the case in Connecticut, physicians in Massachusetts simply do not want to get involved and treat these patients, and just like Connecticut, it is clear we also need legislation.
Please contact Representative Kimberly Fawcett for further consideration on producing a bill for Massachusetts. Rhode Island passed a law - bill (2004-H 7240) protecting physicians who treat Chronic Lyme Disease and requiring insurance companies who have often denied payment, to now pay for treatment should a physician deem it necessary to continue even after the standard 2 week course.
The bill's author, after recieving my letter, suggested I write to the other reps and senators (and get others to do the same), as well as the gov, as they do not yet have enough support for the bill. That's as much as I know.
I hope this answers your question.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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bettyg
Unregistered
posted
no more,
then it's 2 separate efforts on this:
1. yours which you were encouraged to in reply to letter you sent to gov/sen/house reps.
2. being the conn. lyme patients who were busy working on the actual legislation; that's who tincup was referring to.
from what she said, group no. 2 was working on something after the hearing friday.
she was asking you if you were an active member of no. 2 group; NOPE.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
No mo said.. "The bill's author, after recieving my letter, suggested I write to the other reps and senators (and get others to do the same), as well as the gov, as they do not yet have enough support for the bill."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am going to bet dollars to doughnuts that the wording in that bill will be changed.
Actually, it already has been once or twice that I know of...
And the changes aren't always reflected on the website immediately when they happen, so you can't always see things that are going on behind the scenes, or changes that were made.
Like the word "chronic" was removed from this bill... and the sponsor list was changed.
And possibly other changes were made but I really can't remember all the discussions from the past couple of weeks..
And the bills can change day by day anyway... so it is hard to keep up.
I also expect there will be some more changes to it in the next few weeks/months or at some point.
Even our groups have suggested several changes, good ones, but no one knows if they will be considered or used.
My thought is at this time they won't... or it will be a REALLY hard sell. Personally I'm not encouraged at this point that any more "good" wording will get in them...
But that can't be helped since the sponsor writes up the bills anyhow ... and like what happened with this one.. they THEN come to the residents and ask them to support it.
Our choice at that point is to help with the bill and do what we can to make it patient friendly.... or walk away and let the dark side have their way with us.
Now... the problem is... it is very possible the changes that might be made to this bill during the session could be negative. Even VERY negative.
Hey, you know the CT health department.. and the story about what is happening to Dr. Jones, etc.... and...
It is already being chipped away at by the dark side... and they haven't even gotten warmed up yet!
Also note- and I am NOT talking about THIS bill or this bills sponsors- this is just an example...
A bill sponsor sometimes has an ego problem or other concerns we don't know about- like who's buddy buddy with who, how many bills they've had that failed, who they've made deals with, etc.
Sometimes the IDSA friendly fools stomp on their heads till they submit to their demands ... and also busts britches in other legislative offices to sway them. Bully tactics I've seen happen in the past.
Sometimes the sponsor gets to the point near the end of the session that they don't really care or understand the consequences concerning what the bill actually says... as long as it passes and they get the glory.
It's that ego thing again that can rule... if it hurts the people involved or not.
Soooooooooooo...
I know meetings are still ongoing... and behind the scenes stuff is still happening... and will be for a while.
AND.. we don't know the next step because as far as I know it hasn't been decided yet.. but the bill could be shipped to another committee for approval- like the insurance committee. What a nightmare that could be!!
In that committee (in the insurance capital of the country) it could be loaded to the hilt with bad stuff... buried, killed, chopped to pieces, sent forward unchanged, etc.
Therefore....
Writing letters NOW with a "blanket support" has the potential to .... and might cause a problem that we can't anticipate or control.
Let's say you are a legislator and you want your bill to pass.. and they all do no matter what... because that is like bragging rights and a big yee haw for them.
And during the session the original wording of your bill goes bad compared to what it started out to be.
If residents write in to support it, even if they don't know what is actually IN it at the time or it changes 5 more times... the sponsor, when the time is right, can stand up and wave your letters in the air and say the patients support me and my bill!
THAT will influence the other legislators who don't know better and encourage them to vote yea on it... just like the legislator sponsoring it wants them to do.
And at that point the other state reps have gotten letters of support too from people (some times they are never even read and just a total count is given to the legislator ...
So they think all is good with the bill.. people want it.. and not knowing any better they vote to pass it.
Bottom line- Bill sponsors don't always give the best advise for their own bills because they often want them passed no matter what. When they sponsor a bill their next job is to sell it... and they MUST do all they can to get that feather in their cap.
I'd bet if you contacted the bill sponsor for ANY kind of bill they would thank you, tell you to give it a big thumbs up and get others to do the same.
So, just a thought here...
You might want to hold up a bit till the folks who are representing YOUR interests- the ones with no other agenda than your welfare- the volunteers who are walking in your shoes- the ones who have experience and are in the middle of the behind the scenes actions...
Have met with those they need to meet with... have consulted with experts... and shared what they think the best action to take on this bill would be.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And I want to say I so much enjoy the energy ongoing! I smile!
And I want you to know I don't want to discourage folks.. not at all.
I just want to be sure each of you knows the facts, as much as possible because they change so quickly...
So you can make informed decisions and not do anything that might possibly, and not meaning to of course, hurt the cause rather than help it.
I've seen some of the proposed changes from the various CT groups and national groups (LDA & LDF).. and they look good... but selling them while the IDSA is sitting on these legislators heads is tuff.
It's called "politics"... not a pretty picture sometimes.
You're probably right about IDSA folks trying to get their mitts onto this bill and, if not getting it canceled outright, changing the language to suit their interests.
But...
Since the bill's author has a husband and child sick with Lyme for years, and since they have to travel out of state for trx, I was hoping she'd be savvy to any changes in the wording. I doubt, in these circumstances, she would pass it through just to see it pass. I think if it becomes a crummy bill for Lyme patients she would drop it.
But maybe I'm naive here. Maybe it would be out of her hands by then. I don't know the answer to that. But it seems to me that when someone with political power is part of the Lyme community, and is trying to help, this would be a time to cross our fingers and toss out caution, and fight as hard as we can -- until and unless there's a specific reason not to.
I just hope these words don't come back and bite me in the ***. (Though, it would be the most action I've seen in a long time!)
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