LymeNet Flash: Education and Lobby Day with Rep. Kelly- June 22

This is topic Education and Lobby Day with Rep. Kelly- June 22 in forum General Support at LymeNet Flash.

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Posted by LHalins (Member # 98) on :

LYME DISEASE LOBBY-EDUCATION DAY

Date: June 22, 2005

Where: U.S. Capitol, Washington, D.C.

Who: YOU, your family, & your friends

Meet at: The Rayburn House Building's Cafeteria (vending machine side) at 10 am & walk the halls in support of H.R. 2526 to 5pm. The formal picture of us all is at 4:15pm.

What: Educate the House Offices about Lyme disease & other Tick-Borne Disorders, request each sign-on to HR 2526, and encourage health aids to attend an Education program about Tick-Borne Diseases.

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Dear Friends:

We invite you to join everyone at the Capital in Washington, D.C. to educate the members of the House of Representatives about Lyme disease and request that each one sign on to H.R.2526 -

the Tick-Borne Advisory Committee (T-Bac) that was recently introduced into Congress by Representative Sue Kelly's office.

Please email me at [email protected] or call me at 860-870-0070 if you can join us. I have a growing list of volunteers and we look forward to everyone's help. I will send more details to those who contact me to attend.

My best,

Karen Vanderhoof-Forschner, Lyme Disease Community Caucus

Groups Supporting H.R. 2526 include:

* Lyme Disease Foundation

* Lyme Disease Society

* Michigan Lyme Disease Association

* National Capital Lyme Association

* Ticked-Off and Fed-up

* Greater Hartford Lyme Disease Support Group

* Lyme Disease Foundation Midwest Task Force

* North Carolina Lyme Disease Foundation, Inc.

* Lyme Disease Network of South Carolina

* Lyme Disease Association of Massachusetts

* Hope to Heal Lyme, Inc.

* Lesley Fein, MD - Representing physicians

Posted by OptiMisTick (Member # 399) on :

[ 25. February 2008, 01:42 AM: Message edited by: OptiMisTick ]

Posted by LHalins (Member # 98) on :

Rep. Kelly is a strong supporter of Lyme disease patients. Any suggestion to the contrary is just false.

Posted by Michelle M (Member # 7200) on :

quote:
Originally posted by LHalins:
Rep. Kelly is a strong supporter of Lyme disease patients. Any suggestion to the contrary is just false.

LHalins, this is a public board so I s'pose you have just as much right to post here as I do. But it sure looks to me like you're (a) a paid lobbyist or (b) a paid staff person of this politician. If you've made a meaningful contribution to this Board OTHER than as a talking head for her, I can't find it with the "search" function.

This is a classic "bait & switch" political ploy - the republicans see something is definitely buiding up a head of steam and it's definitely GONNA happen...so they hurry up and design a bill of their own, only extremely watered down, then pretend it's all a really GOOD thing. The insurance companies back them mightily since they know passage of THAT bill guarantees that things will stay exactly the same!!! Most of the public backs them too because the bill is worded trickily enough to fool everyone into thinking it means something.

Sorry. Not buyin' it. Thanks for the interesting link, Ms. OptiMsTick!

Michelle M.

Posted by lou (Member # 81) on :

Michelle, you are a newby, so cannot be expected to realize that for the last couple of years there's been an effort to get some federal legislation passed. But legitimate lyme organizations do not agree on the scope. As I understand it, the main problem is getting something modest vs. a more comprehensive bill. One group says the modest approach has a better chance of getting passed. The other group says we only have one shot, so try for the best package. This is described by group a as unrealistic.

So, don't think the charge of lobbyist for ins. co. is accurate.

It would of course be better if we were united. But I don't honestly know myself whether the scope of the bill has much bearing on whether it gets passed or not. Only an experienced politician might be able to comment on the subject. And maybe looking for logic in legislative processes is a waste of time. More of a crapshot, in my opinion.

The big problem is preventing the opposition from using this for their own benefit. We can certainly try to tie it up so they can't do it, but my experience is that professionals always have the advantage over the amateurs. It is their home court and we are the visiting team. They are united in their efforts; we are divided.

Don't know the answer. Guess we have to keep trying. Really, there is no other choice.

Posted by LHalins (Member # 98) on :

I think the personal attacks from those opposing the Sue Kelly bill are really sad. I am a volunteer patient advocate, dedicated to helping on Lyme disease.

Posted by OptiMisTick (Member # 399) on :

[ 25. February 2008, 01:43 AM: Message edited by: OptiMisTick ]

Posted by Ruthanne (Member # 7484) on :

Before taking any action or making a decision on which bill to support, please go to http://thomas.loc.gov and read the text of both bills submitted to Congress. Think for yourself, and decide for yourself which bill to support! Don't let me or anyone else tell you what to do. Please notice that the Kelly bill, HR 2526, provides money for research for a better test for Lyme, but it designates absolutely no money for finding a cure for Chronic Lyme. The Smith bill, HR 2877, designates research money for a test and research for finding the best treatments for chronic Lyme. It specifies that ILADS doctors and doctors who treat chronic Lyme should be on the advisory committee. The Kelly bill does not require any physicians who treat chronic Lyme to be on the committee. ILADS doctors are supporting the Smith bill. ILADS doctors must believe that research into treatment is important. Do you?

Posted by OptiMisTick (Member # 399) on :

[ 25. February 2008, 01:44 AM: Message edited by: OptiMisTick ]

Posted by LHalins (Member # 98) on :

Thanks OptiMisTick! I appreciate your kind words, and I know you are a devoted advocate for Lyme disease patients.

Posted by Michelle M (Member # 7200) on :

quote:
Originally posted by LHalins:
I think the personal attacks from those opposing the Sue Kelly bill are really sad. I am a volunteer patient advocate, dedicated to helping on Lyme disease.

LHalins, I do sincerely apologize for implying that you are paid when you are in fact a volunteer.

However, the glaring holes in your bill should concern you as a patient advocate.

You come to this Board only to lobby for political support, knowing this is a board for CHRONIC LYME. Yet your Bill IGNORES chronic lyme. Interestingly, this is a position big insurers have been taking for quite some time. By making sure no treating LLMD's or ILADs people are on committee, your bill virtually guarantees that nothing will really change.

Chronic Lyme sufferers will still get nice little letters from Blue Cross stating, "Your claim is denied. Studies have not determined there is any benefit to IV therapy beyond two weeks."

I cannot see how any chronic Lyme patient can support your bill, once they see the difference.

Michelle M

Posted by OptiMisTick (Member # 399) on :

[ 25. February 2008, 01:44 AM: Message edited by: OptiMisTick ]

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