LymeNet Flash: TODAY- NEED HELP! Got a phone? Give them a call!

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Posted by Tincup (Member # 5829) on :

TIME TO KICK THE LYME DISEASE BILLS

PLEASE HELP!

The Maryland Lyme Disease Bills (SB 596 and HB 1323) were recently submitted in
good faith but were TOTALLY gutted and amended at the last minute. The current wording is NOT in the best interest of patients and the bills need to be killed TODAY.

PLEASE contact EVERYONE you know and ask them to contact everyone THEY know
to help.

This MUST be done by Friday, April 8, 2005 before the final vote.. by noon.. maybe later but will update you on it soon.

Please call the following Senators and tell them to ``KILL the Lyme disease bills because
they are DETRIMENTAL to Lyme patients''.

NOTE- If you can't get through from your area.. and want to help.. here is a site where you can email these folks instead... and/or email the ones in the next post below. Just don't pay for long distance when you can email them. Ok? THANKS!

http://www.mdarchives.state.md.us/msa/mdmanual/05sen/html/com/02eco.html

PAULA HOLLINGER 1-800-492-7122, ext. 3131 (toll free)

RICHARD F. COLBURN 1-800-492-7122, ext. 3590 (toll free)

GWENDOLYN T. BRITT 1-800-492-7122, ext. 3745 (toll free)

J. LOWELL STOLTZFUS 1-800-492-7122, ext. 3645 (toll free)

JANET GREENIP 1-800-492-7122, ext. 3568 (toll free)

PAUL G. PINSKY 1-800-492-7122, ext. 3155 (toll free)

JAMES BROCHIN 1-800-492-7122, ext. 3648 (toll free)

JOAN CARTER CONWAY 1-800-492-7122, ext. 3145 (toll free)

ALLAN H. KITTLEMAN (410) 841-3671, (301) 858-3671

SHARON M. GROSFELD 1-800-492-7122, ext. 3137 (toll free)

ROY P. DYSON 1-800-492-7122, ext. 3673 (toll free)

NANCY JACOBS 1-800-492-7122, ext. 3158 (toll free)

NATHANIEL EXUM 1-800-492-7122, ext. 3148 (toll free)

THANK YOU!

[This message has been edited by Tincup (edited 07 April 2005).]

Posted by lou (Member # 81) on :

So, we don't want the task force bill either?

Posted by Tincup (Member # 5829) on :

ONE more favor?? Pretty please? We are jamming and appreciate YOUR help.

Just NOW got the word we need to email these House members and say the following or something similar...

Attention- Lyme disease bills SB 596 and HB 1323

Please vote NO to the gutted, amended, and rewritten Lyme disease bills because
they are DETRIMENTAL to Lyme patients in the current form or any future amended form prepared this session.

Thank you!

Your name, address, and phone number must be on the message.

You don't know how important this is to OUR future.. and I personally thank each of you for helping ALL of us.

Posted by Beverly (Member # 1271) on :

Hey Tincup, thank you for posting all this info for us, and for all you do.

The toll-free numbers are not available in my area...can you psot the regular numbers..pretty please?

I already did the emails..hope it helps.

Posted by Tincup (Member # 5829) on :

No lou.. yes lou..

Ahhhhhh!!!

Running around like a chicken doing the funky thing here.

Ok.. I SHOULD explain more. And I AM trying my heart out, researching, studying, calling, writing, etc and have devoted every minute to working on what I feel is best for the patients since these bills were put in for consideration. I may not be right.. and I admit I have NO expereince with this process.. but I do know Lyme.. and I kinda have a good feel for people.. and I do have YOUR best interest in mind.. and I am FREE of charge!

I think we.. as patients and support group leaders ... are the ONLY ones right now who don't have some other hidden motive or incentative in mind. Sad... but true.

I have come to the conclusion that I don't like these stinking games they are playing... with OUR lives. When I left yesterday .. and I stayed very late and went to various offices to try to get us help and advise.... my first thoughts were that I was NOT going to ever work with anything or anyone with Lyme disease again.

Yep.. they rattled MY cage pretty badly yesterday after being there about 9 hours.

And to get ME to that point.. which I have NEVER been at.. means it has been pretty rough. Anyhow..

The Senators we THOUGHT were understanding the needs of patients and are REALLY trying to (most of them)... during their rush to vote on 200 more bills... have suggested they will try to put the BAD Senate Bill we ABSOLUTELY don't want, in with the Task Force Bill.

They see that action as "helping us"... and we can't get through to them it would be HORRIBLE!!!

They also have suggested they want to put the Maryland Board of Physicians on the Task Force too... and that could happen.. and most likely will. That means both the Health Department AND this Board of Ducks.. I mean Physicians... would be running the Task Force.

The Board of Physicians is composed of Hopkins folks (in with Bumsteere again).. the Infectious Disease ducks we all have come to want to drown.. several insurance companies.. and the Health Department who has fought us for 20 years... AND the OLD Board of Physicians who were so bad a Senate bill was passed to try to fix them when it was determined they were leaning towards doctors too often when patient complaints were filed.

To be honest.. there are some folks here in Maryland who still want to try to hang on to and salvage the Task Force Bill. Right now we have agreed to disagree.. very nice and politely. I simply am not as trusting as they are in this situation.. possibly due to my years of experience dealing with the situation.

In MY opinion.. and NONE of us are experienced with politics... we can't sit here and HOPE they do the right thing and then decide to try to fix it if it blows up in our faces later. We saw what was done to the Senate Bill without our input or blessings.. and that could happen to the Task Force Bill in a heartbeat because it JUST went before the same committee yesterday.

If we blow it all now and just let them have their way with us... what I see happening is a Task Force (consisting mainly of the health department, insurance companies, and ducks) who now have the Senate and House Seal of Approval on it for whatever they come up with. Since the very first thing that was done to the bill (amendment) was to limit Support Group people on the bill from 4 people to 2 people... and that was done for NO given reason.. that makes me worry.

In addition.. we went.. a handful of sick folks who have been trying to deal with all this.. to the hearing yesterday. I personally drove 12 hours to rush up there.. and many had hardships getting there.. and many had bad days hitting them but they went anyhow.

After waiting hours and hours.. and even though they allowed EVERY other group to speak.. they refused to allow ANY of us to speak. ONE member insisted and was barely granted ONE minute ... which after being hit like that with the surprise of not being allowed to speak.. and some rather rude remarks from a certain Senate memeber.. didn't really allow that person to get all our points across.

If the Task Force Bill passes as is.. with NO amendments.. I would possibly support it... but STILL don't like it. But it has been amended to negatively affect us all at this point.. and I wasn't thrilled with it in the original form to start with.. and it most likely will have more additions, changes, etc. before tomorrow... and I DON'T think the changes will be in our best interest.

Best to back off and NOT "wait and see"... in MY opinion. And everyone there is feeling rushed, overworked, and is in NO mood to think or listen.. or be educated about Lyme disease.. IF you can even find them hanging around right now.

It is a mad house. I was also told by lobbyists that this is the WORST time to try to get a bill passed... and they were kinda old and had been doing this for years. They said.. due to Democrats vs. Republicans... turf wars between the Senate and House.. the election year we are in... the current Governors administration with a do nothing attitude, etc.. they felt the place was horrible to try to do anything... and "polly-tics" would be the reason things that were meant to be good, would be sacrificed and/or trashed.

I actually feel like we are dealing with a bunch of 2 year old babies at this point... and DON'T want them in this mood to make decissions that will affect us all... without proper and thoughtful consideration.

Hope that helps.

Hope YOU are doing ok.

Posted by MammaLyme (Member # 1257) on :

How horrible! AFter listening to all of the testimonies on March 10 including my own, I cannot believe we live in this State where we have no protection for our doctors. My husband and I go to an ID doc. I do not want him to dispair. He has been great but is no longer seeing any new patients. This is happening to all of the ones in MD.
When I saw one of the last ones to testify, a brother trying to help his 40 year old brother who had a thriving landscaping business and was told he had months to live and that it was ALS, then to find out it is lyme and is being treated in PA, what is wrong with these idiots? It was the saddest testimony of all. the brother that was ill was all crippled up and crying. It was pitiful. Don-t these people have a heart?

Posted by MammaLyme (Member # 1257) on :

tHANK you Tincup for taking up for us. We really appreciate everything you worked so hard to do.

Posted by sizzled (Member # 1357) on :

UP!

Posted by Tincup (Member # 5829) on :

Hey you guys!

GREAT to see friendly faces and some support!

Beverly.. I updated the numbers with a site.. then couldn't get it to fit too well.. but didn't have time to copy and paste all the numbers today... sorry.

If anyone has to call these numbers and PAY.. PLEASE don't!! Please do email instead.. ok? I didn't know you couldn't call from far away.. sorry.

And THANK YOU everyone!!!! We are making a difference.

MammaLyme..

Could I impose on you to contact those folks in the PA groups with this link so they might help us out? IF it is easy enough for you to do it would be VERY kind. We need more attention here.. but not to worry... it will all be over soon!

Tanks berry mush Mamma Bear. Or is it Mamma Lyme?

Hey ho ho Siz! You are hanging in there with us. Please know that I am missing you and everyone here. It seems I don't have a life anymore .. just a phone in one hand and a computer under the other.. and pillows under my knees for gittin down and praying!

THANKS for bringing this up for me. I MUCHLY appreciate it.

Yes.. muchly IS so a WORD! I just made it up.

Posted by believe3 (Member # 6216) on :

Thank you so much Tincup...everything you do is appreciated more than you know.

------------------
Believe in Miracles

Posted by MammaLyme (Member # 1257) on :

I already sent it on to the Maryland and PA lymies. The mail boxes would not accept the emails. We had to keep trying.

did you get the one about the woman dying from lyme in Annapolis?

Take care and let me know when anything is decided. I wonder if we can see it tonight at midnight on mpt.

Posted by firsttwin (Member # 5529) on :

DONE

Maria

Posted by Corinne E (Member # 4670) on :

Tincup,

I tried 3 times to send, got through to about a third of them. Others mailboxes are filled to beyond capacity and won't take anymore messages. I will try again in morning.

Corinne

Posted by Tincup (Member # 5829) on :

Hey little b3.. and FT.. and MAMMA.. and Big C,

THANKS! I do appreciate your help... as will others who get Lymed in the future.

Yes Mamma.. I did.. and I should have known you would. THANKS!

I have posted a new post.. same topic.. but we have not had it come up for a vote yet.. so keep up the good work till the FAT lady sings.