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REMOVE OUTDATED IDSA GUIDELINES FROM NGC!

Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.

The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.

BACKGROUND: LYME POLICYWONK: http://www.lymedisease.org/news/lymepolicywonk/898.html

Please sign onto the petition at the link below:

http://www.lymedisease.org/petitionscript/index.php



OPEN until 2/29/2012


Please take 5-10 minutes to complete this anonymous survey about Lyme Disease. This survey is only for Pennsylvania residents. PLEASE FORWARD TO OTHERS IN PA.  If you do not live in PA please send it to friends and family who do.
This survey is open to the general public and should take 5-10 minutes.  Your participation in this survey will be fully anonymous and you have the right to leave questions unanswered. Please forward to any and all groups.
This survey is being conducted by the Pennsylvania Lyme disease Awareness Committee (PLDAC).  The PDLAC is a collaboration of the Chester/Delaware Farm Bureau, the Lyme Disease Association of Southeastern PA, Inc. and the Chester County health Department.   


CALL TO ACTION!!!

Join us in asking PA Congressmen and Congresswomen to join their fellow Congressmen Wolf, Gibson, and Smith in calling on the NGC (National Guidelines Clearing House) to remove the out of date IDSA Guidelines! 

TO FIND YOUR UNITED STATES CONGRESSMEN AND WOMEN AND PA DISTRICTS: 
http://www.house.gov/representatives/#state_pa

BACKGROUND: LYME POLICYWONK: http://www.lymedisease.org/news/lymepolicywonk/898.html
On January 17, 2012, Congressmen Smith, Wolf, and Gibson called on the National Guidelines Clearinghouse (NGC) to remove the IDSA’s outdated Lyme guidelines. We applaud them! But, this, of course, is the middle of the story not the beginning, so let’s go back.  read full story at  http://www.lymedisease.org/news/lymepolicywonk/898.html  

A sample letter:  Thank you for your service to the commonwealth. I am writing to ask you to join your fellow congressmen Smith, Wolf, and Gibson and call on the NGC (National Guidelines Clearing House) to remove the outdated IDSA guidelines for Lyme Disease. Lyme Disease is a growing problem in our state, and the IDSA guidelines are not up to date and are therefore grossly inaccurate. For Background on WHY this is so important please read: http://www.lymedisease.org/news/lymepolicywonk/898.html Thank you giving this the attention it deserves.


ILADS
View these conference recordings on Dec 17: 
ILADS Conference 2011





A Holiday Gift
A Tutoring Scholarship Available for
Children and Youth with Lyme!

In this season of giving, it is MontCoLyme's pleasure to announce a new scholarship fund for Lyme kids in PA, the"Alan B. Miller Lyme Scholarships":






  • The "Alan B. Miller Lyme Scholarships" will provide tutoring through Green Valley Academy located in Paoli, PA, for children and youth suffering from Lyme and/or related tick-borne diseases.
  • The purpose of these scholarships is to help kids with Lyme, often affected with neuro-cognitive and psychiatric symptoms, meet the challenges of school and learning in light of their health challenges.
  • It doesn't not matter whether your child is being home-schooled or currently enrolled in school.
  • The scholarships are awarded initially as either 1 hour/week for 20 weeks, or 2 hours/week for 40 weeks. 
  • Green Valley Academy specializes in serving the needs of children with learning issues, and their faculty is skilled in learning dysfunctions and health impacts on learning.
  • The tutoring sessions can help children keep up, catch up, and/or develop learning strategies to serve them well given their current challenges.

These scholarships have been funded through generous donations to the Green Valley Academy by Dr. Alan B. Miller initially funding 5 scholarships.  3 of these have already been allocated to children with Lyme, and 2 remain.  But don't despair, the fund will be renewed if there is a demonstrated need.  So get your applications in, and pass on this email.

 

CLICK HERE for the application.  It is short and simple - there are no financial need requirements.  The goal is to help kids with Lyme, period.  Green Valley Academy (http://www.greenvalleyacademy.org/) is located in Paoli and has a Day Program as well as tutoring services for children with health or other special learning needs. 

 

Please let me know ASAP if you are interested in a scholarship for your child and get your application in.  The application is attached, along with an information sheet.

 

We thank the Founder and Director of the school, Mimi Green, who has had Lyme disease, and Dr. Alan B. Miller for their generous contribution and commitment to help kids with Lyme Disease. 

 

I look forward to hearing back from you as soon as possible,

 

Thank you,

 

Julia Wagner, MBA


President of MontCoLyme (Montgomery County (PA) Lyme Information and Support Group)MontCoLyme@aol.com


MontCoLyme - 211 Main Street, North Wales, PA  19454


888-661-LYME (888-661-5963) (x102, Julia) 





GREAT NEWS!!!!
ACTION NEEDED!!!!!

From: JuliaFWagner@aol.com
Subj: ACTION- URGENT NEWS: PA HouseBill 272 will be voted on by committee - 12/14/11
 
Great News!!  The PA House "Human Services Committee" has House Bill 272 (Lyme Disease) & is going to vote to bring this bill out of committee NEXT WEEK!!  Here's a recap of what is going on with this bill:
 

-          this committee held a public hearing on the bill on  Aug 30th.  A video link to that hearing is here:  http://media2.pahousegop.com/Generator.asp?videoname=461095653.wmv

-          Since then amendments have been made to make the bill better - for example, surveillance program and testing of ticks publishing the data publicly has been added.

-          We received the call yesterday - the Chair of the committee, Rep. DiGirolamo - indicating there is enough support to bring the bill out to the House Floor - this decision will be made formally by the committee next week in the Dec 14th in their committee meeting.

We have been told that it is absolutely critical that YOU contact members of the Human Services committee BEFORE 12/14, especially those that are in YOUR district, or those near your district. Many are in the Northeast, and Pittsburgh area and Southeast areas. Ask for their support on this bill, and to get it out for a vote.  Educate them regarding it’s importance:

 

-          patients/doctors should have the choice of treatment approach, not insurance companies (just like breast cancer)

-          these treatment options are available for acne, and many other diseases, it makes no sense that Lyme disease patients, with much more serious disease, should not have access to these treatments that can be life-saving

-          insurance companies should pay for the treatment prescribed by the doctor

-          the harm to patients is unconscionable

-          PA is #1 in Lyme disease, and the time to act is NOW

 

Find YOUR REPRESENTATIVE OR A NEIGHBORING ONE (doesn't have to be yours as long as they are generally in your region) ON THE COMMITTEE LIST BELOW, and call and email them -- ask them to vote to bring the bill out of committee!!  THIS IS THE TIME TO ACT!!
 
The Committee list is below -- committee cosponsors are highlighted - Baker, Cohen, Killian, Murt, Watson.
 
 
Find the Reps. in or nearest to your district below and click this link to get contact info and CALL:  http://www.legis.state.pa.us/cfdocs/cteeInfo/cteeInfo.cfm?cde=56&body=H

 

 

PA HOUSE HUMAN SERVICES COMMITTEE

 

DiGirolamo, Gene , Chair, Lower Bucks County

Cohen, Mark B. , Democratic Chair

Hahn, Marcia M. , Secretary,  Northhampton, outside Allentown

Cathy's Group

Brownlee, Michelle F. , Democratic Secretary, Philadelphia-Center city, Fairmount District

Julia's Group

Delozier, Sheryl M., Subcommittee Chair on Drugs and Alcohol, Cumberland ( Harrisburg area)

Linda's Group


Gergely, Marc J., Subcommittee Democratic Chair on Drugs and Alcohol, Allegheny/McKeesport, SE of Pittsburgh

Pittsburghers


Murt, Thomas P., Subcommittee Chair on Mental Health, Montco/Phil ( Willow Grove , Hatboro, BrynAthyn)


Payton, Tony J., Jr., Subcommittee Democratic Chair on Mental Health, Philadelphia- Olney/Feltonville

Julia's Group

Baker, Matthew E.

Bradford/Tioga

DeLissio, Pamela A.

Julia's Group

Montco/Phila (Manyunk, Wissahickon Valley Park , Bala Cynwyd, Merion Station)

Brown, Rosemary M.

NEPA groups??

Monroe/Pike (Stroudsburg area)

Johnson, Kenyatta J.

Julia's Group

Phil (South Philly)

Emrick, Joe

Cathy's Group?

Northhampton ( Allentown area)

Pashinski, Eddie Day

NEPA Group

Luzerne (Wilkes Barre area)

Evankovich, Eli

Pittsburghers?

Armstrong/Westmoreland ( Pittsburgh area)

Smith, Ken

NEPA Group

Lackawanna ( Scranton area)

Heffley, Doyle

Cathy's Group?

Carbon (N of Allentown )

Wagner, Chelsa

Pittsburghers?

Allegheny ( Whitehall , Durmont)

Helm, Susan C.

Linda's Group (Linda this is our "friend's" Rep!)

Dauphin ( Harrisburg )

Wheatley, Jake

Pittsburghers?

Allegheny (City of Pittsburgh , Squirrell Hill, Shadyside)

Killion, Thomas H.

Delaware/Chester

 

 

Quigley, Thomas J.

Julia's Group

MontCo ( Pottstown , Royersford)

 

 

Roae, Brad

Yolanda/Missy's Group

Crawford (S of Erie )

 

 

Simmons, Justin J.

NEPA Groups

Lehigh/Northhampton

 

 

Watson, Katharine M.

Bucks (Doylestown area)

 

 
 
PLEASE ACT NOW!  IF THIS GETS OUT OF COMMITTEE, IT WILL GO TO A VOTE IN THE HOUSE!
 
Julia Wagner President of MontCoLyme (Montgomery County (PA) Lyme Information and Support Group)
Chair, LymeAction PA, a state-wide coalition, www.lymeactionpa.com
MontCoLyme@aol.com MontCoLyme - 211 Main Street, North Wales, PA  19454
c) 267-254-8605 (for direct calls to Julia)
888-661-LYME (888-661-5963) (for general calls to MontCoLyme)




LYME-TAP 

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program
to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need.
For more information and to learn how to apply visit their website:  http://www.lymetap.com/




LYME DISEASE.
SUPER SIZED.

The International Lyme and Associated Diseases Society is running a powerful public awareness campaign to create greater understanding of the dangers of Lyme Disease, thanks to a special donation of advertising time on the CBS Jumbo Tron. The all-type animation focuses on the statistical fact that Lyme disease is growing faster than AIDS and sends viewers to the ILADS.ORG website for more information. View the complete message at: http://www.ilads.org/media/ilads_jumbotron.php


Additionally below are links to webcasts from the ILADS conference held in Toronto last month.  

Of Special Note:  Dr. Marcus Conant spoke for the 2nd time at the conference -- his tremendous efforts to put AIDS on the map in America were featured in the award winning film "And the Band Goes On..." on the AIDS epidemic and all it took to get the medical establishment to pay attention to AIDS.  Dr. Conant, in his "retirement" has gotten very interested and involved in chronic tick-borne diseases. I met him personally at the Columbia University conference, and he is an incredibly humble and heroic individual, with tremendous compassion and a willingness to act when others do not.  http://www.ilads.org/media/videos/videos_conant.php

DR. JOSEPH J. BURRASCANO: Borrelia Infections - diagnosis and treatment
DR. MARCUS CONANT: Cutaneous Mimics, Don't Be Fooled
DR. CHRISTINE GREEN: Coinfections And The Opportunistic Groupies
DR. JOSEPH JEMSEK: Advanced Techniques in Physical Diagnosis of Lyme Borreliosis Complex
DR. RICHARD HOROWITZ: Lyme Disease & Babesiosis: Updates on Diagnosis and Treatment 2011
DR. CHARLES RAY JONES: Pregnancy and Tick-borne Diseases: Gestational Lyme
DR. STEVEN J. BOCK: Overview of Integrative Patient Care in Tick-Borne Diseases


http://ilads.cmail3.com/t/r/l/iyhivd/mitduluyu/b/








11/22/11
IMPORTANT UPDATE ON
PA HOUSE BILL 272!
There is a chance that the HOUSE BILL will be
coming out of committee for a vote! 

~PLEASE STAY TUNED~
WHEN WE NEED YOU TO CALL AND WRITE PLEASE DO SO!
WE WILL EMAIL ALL WHEN IT IS TIME

PLEASE GET THE WORD OUT TO EVERYONE YOU KNOW TO CALL AND WRITE!
PREP THEM TO ACT WHEN NEEDED!






PA Doctor shares how personal experience led him to
 "Eat Crow With Lyme".
Read his story in the Home School Court Report
Click HERE for the story!
 


At this time our TOP PRIORITY is to support the

"Lyme andRelated Tick-Borne Disease Education, Prevention and Treatment Act" also known as PA SB 210

(formerly 1199).

To view full content of PA SB210 please CLICK HERE.

Please contact your SENATOR and ask for his or her vote to pass SB 210 in PA. 
You, as their constituents, make a big difference in their awareness of the issues. Remember, many are NEW to the Senate and may be fully unaware of the bill or the magnitude of the problem.

Contact your REPRESENTATIVE and ask for a meeting... again, many are not aware of the crisis in our state.  Please share with them. They can't help us if they don't know.

For a sample template letter that you can personalize CLICK HERE.

For LINKS to all state REPRESENTATIVES and SENATORS by county CLICK HERE.


Video archive of The Public Hearing on PA SB1199 is available, in its entirety:

CLICK HERE for a link to the video webcast.

To view the Public Hearing Agenda CLICK HERE.  The video and audio links are also found on the page.


Welcome Lyme Action PA YOUTH!!!

CLICK HERE for an open letter from Ariel Marquet


Live in PA? Under 35 with a lyme diagnosis? Have a child in PA who has lyme?


CLICK HERE to take the PA LYME YOUTH SURVEY!


"LymeAction PA is led by a coalition of PA Lyme Advocacy and Support Groups, chaired by Julia Wagner, MontCoLyme, and including LDA-Southeastern PA, York Lyme Disease Support Group, The Lyme Society, The PA Farm Bureau, Chester/Delaware Counties, and The National Lyme Disease Association.  CLICK HERE for information identifying more PA groups actively supporting this bill and effort.

Contact Us: Lyme Action PA EMAIL: lymeactionpa@gmail.com 

Julia Wagner at Montogmery County Lyme Disease Support Group: MontCoLyme@aol.com

MontCoLyme Website: www.montcolyme.org



If you would like to receive updates from Lyme Action Pa please email us at lymeactionpa@gmail.com. Please put "add me to the list" in the subject line, and your contact information in the message:  Your name (required); Your address (optional); Your telephone number (optional).


 


   

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