Home - Lyme Action PA






SURVEY!
 
Click on the link below to 
participate in a survey out of 
Edinboro University regarding 
Experiences of Symptoms 
and Diagnosis of LYME:



LYME DISEASE IN THE NEWS: 


JUNE 24 2014 Dr. Alan Steere interviewed on NPR
Please post reactions on NPRs page:





Senator Greenleaf talks about SB177, Lyme Disease, and future legislation for insurance. 
As for the insurance provision, the veteran lawmaker said he would again 
introduce a bill mandating insurance coverage for extended
treatment prescribed in the next session."

"I don’t give up,” Greenleaf said. I take it step by step.”

http://www.montgomerynews.com/articles/2014/06/24/ambler_gazette/news/doc53a9adc9b8b4b587260724.txt#.U6qne4Vk5oU.facebook



LINK to a simple and direct POST CARD 
that you can PRINT and SEND to Governor Corbett!

ACTION STEPS: 
Thank your Legislators in the House and Senate!
Call the Governor's office and ask him to sign 
SB 177
STAY TUNED for news on the date the Governor will sign.
Hopefully MANY will attend!
 


SENATE BILL 177 UPDATE:
(updated June 16 2014)

The Senate should concur on Senate Bill 177 
very soon, possibly even this week! 
Once this happens it will 
go to the Governor for one last step – 
his signature.


ACTION STEPS FOR US ALL:
1) Send thank you notes to the House Representatives 
your own representative, as well as Representative DiGirolamo and Representative. Baker.
2) Contact YOUR SENATOR via notes and/or calls. Ask him/her to concur SB 177.
3) Write letters/emails to the Governor asking him to sign the SB 177.

FIND YOUR LEGISLATORS CONTACT INFO HERE: http://www.pasen.gov/




LymeActionPA Announces:

PA House PASSES SB 177 today!   

You can see the actual bill here:  http://gallery.mailchimp.com/350d561077114a4988818a873/files/6da9847e-9ab8-4425-b466-78e5d9727184.pdf 

It will now progress to the Senate for a "concurrence" vote.  If the bill passes concurrence in the Senate, it goes before the Governor.  

STAY TUNED:  when the bill is signed by the Governor, we would love to have a LARGE showing in Harrisburg! ACTION 1:   please call your SENATOR to vote to concur SB177                    
http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/
ACTION 2:  calling all YOUTH affected by LYME -- we are looking for youth and young adults who will be available to join a bill signing with the Governor, if and when it happens - please emailmontcolyme@aol.com if you would like to attend.  

You can continue to track progress on line -- http://www.legis.state.pa.us/cfdocs/legis/home/session.cfm

Or you can check www.lymeactionpa.org for updates. 

 

 Call Your PA Senator to VOTE Yes
for SB177!! 

 

 

 
- Julia Wagner, MBA
  President, PA Lyme Resource Network, a 501c3



6.10.14  A letter from Julia Wagner - 

This Wed. 6/4/14, the House, Human Services Committee, unanimously passed a revised version of Senate Bill 177 (Senator Greenleaf main sponsor). CALL YOUR HOUSE REPRESENTATIVES AND TELL THEM THIS IS A CRITICAL 1ST STEP FORWARD AND TO SUPPORT IT 

ALSO LET THEM KNOW - IT IS NOT ENOUGH - THAT ACCESS TO TREATMENT THROUGH INSURANCE COVERAGE MUST BE ADDRESSED GOING FORWARD. This bill is an important FIRST step in legislation to address the critical gaps in addressing tickborne diseases in PA. It will IMMEDIATELY require communication of recent tick surveillance research findings of Babesiosis, Bartoneillosis, Borrelia myamotoi, and other diseases found in the ticks in PA

This is critical - myamotoi is a newly recognized strain of Lyme disease which affects the nervous system very quickly and seriously. The bill will also engage schools in prevention, and protection - AND add chronic tickborne diseases as a covered condition for student learning accommodations -- so critically important. Lastly - the task force is ordered to convene and finish quickly to generate a prevention program by PA, and an education program that must be broad spectrum covering multiple views - including the huge body of research demonstrating persistence of Lyme. THIS IS A HUGE FIRST STEP FORWARD. 

All of us hoped that insurance would be part of this first bill -- however, we need to deal with the realities that exist, and get something done NOW. I don't know about you, but I don't see any park anywhere warning about ticks -- this bill will change that. And instead of having to hire a lawyer to ensure that my kids get the time they need to test because their memory and processing speed was so impaired by Lyme, students will have a specifically covered condition

This bill is not perfect but it will make a difference NOW - AND LymeActionPA will keep fighting -- we have a commitment to move quickly onto the NEXT bill to address the next gap - Patient's Access to Treatment/Insurance. In the meantime, there are happenings that will give us firm support for this bill going forward. 

CONTACT YOUR REPRESENTATIVES NOW!!! - Thank you for using your VOICE for change - 
Julia Wagner, Chair, LymeActionPA



SB 177 PASSED a SECOND CONSIDERATION VOTE!

WHAT YOU CAN DO:   KEEP CALLING YOUR REPRESENTATIVES and SENATORS!!! 
TELL THEM TO VOTE YES ON SB 177

AFTER IT PASSES THERE IT WILL GO TO THE SENATE.

Call GOVERNOR CORBETT, TOO.
TELL HIM WE NEED SB 177




View Conversations LIVE! on WPSU, recorded Thursday March 24, 2014

WPSU's Patty Satalia interviewed
founder and the leader of  Lyme Action PA, PALRN, and Montco Lyme Julia Wagner, 
Director of the Northeast Wildlife DNA Laboratory and a professor of biological sciences at East Stroudsburg University, Jane Huffman PhD, 
and a strong advocate and strong supporter of our efforts in PA Dr. Daniel Cameron. 

Hear them discuss:
Chronic Lyme
Prevention
Diagnostics
Status of the Controversy over Chronic Lyme
and more!

YouTube Video





 
The 2nd Annual 
ILADS Hershey Conference
Was a huge success!


 
Distinguished Speakers Included:

PA State Senator Stewart Greenleaf

Dr. Richard Horowitz

Dr. Jane Huffman

Dr. Daniel Cameron

Dr. Judith Leventhal

Dr. Joseph Burrascano Jr.


 

 Mourning the Loss of a friend to us all, 

Representative Dick Hess. 


From Julia Wagner of Montoclyme & Pa. Lyme Resources Network:

It is with great sadness that I pass this news along. Rep. Dick Hess died Friday, 9/6 after complications from recent leg surgery.

As you all know, Rep. Hess has been a very strong and passionate advocate for the Tickborne disease cause, motivated by a close family member's very serious case. He was
holding strong to advocate for insurance coverage for patients, and we are in the middle of reviewing that revised legislation that would have be introduced later in September.

See below for information about Rep. Hess's funeral, and address to send condolences. He was a tremendous advocate for our community and cause and I encourage you to send a personal condolence to his office to pass on to his family.

Thank you all - Julia

This is the address –

Representative Dick L. Hess
133 S Richard St
Bedford PA 15522-1343

This is the link to the funeral home obituary. You would also be able to send condolences online as well.
http://www.akersfuneralhome.com/book-of-memories/1666599/Hess-Dick/obituary.php
 




Thank you to Transforming Health for raising Awareness about 
Lyme and other TBDs with two very powerful PA stories!  View Lyme stories on their page http://www.transforminghealth.org/ or
Please SHARE these stories to 
raise awareness about the real life implications of 
LYME and TBDs!

Thank you to Doug and Linda for sharing your stories to help others!




Meet 5 more Lyme Effected Youth on YouTube.

Meet Carlie








Borrelia Culture from Advanced Labs published in peer reviewed journal!    read article: http://www.medsci.org/v10p0362.htm


Sapi E, Pabbati N, Datar A, Davies EM, Rattelle A, Kuo BA. Improved Culture Conditions for the Growth and Detection of Borrelia from Human Serum. Int J Med Sci2013; 10(4):362-376. doi:10.7150/ijms.5698. Available from http://www.medsci.org/v10p0362.htm





LYME ACTION PA 
is proud to share
LYME YOUTH ACTION VIDEOS- 2012!

AND

Senator Greenleaf and Representative Harper
Speaking in Support of Lyme Disease Legislation in PA


Please view, and PLEASE SHARE!



House Subcommittee met on LYME Disease 7/17/12

 
The following link provides a full summary of the hearing, a link to the video archive, 
and a call to action!  Please read and act now.  
Let's make 2012 the year things change for the better!  





Lyme Light Fashion Show Was a Huge Success! More to Come!

Meghan Harrison shares her Lyme Disease Story







View Lyme Light Fashion Show 2011~  CLICK HERE!




STAND UP AND SPEAK!
URGENT ACTION NEEDED!

PA House Bill #272 was laid on the table in the house this week and will be brought out for a vote soon (most likely March).  This is the time to CALL YOUR HOUSE REPRESENTATIVE, and follow-up with a SHORT personalized email.

House Bill 272 has made that trip to the HOUSE FLOOR!
Vote Expected in 
MARCH!!!!

CALL YOUR PA STATE REPRESENTATIVES 
TELL THEM TO 
VOTE YES on House Bill 272!!!
CLICK HERE to see the page on HB 272, and 
to Find  your State Representative!

 
This bill has included in it 2 very important parts: SEE CURRENT LANGUAGE OF BILL at http://e-lobbyist.com/gaits/view/245528
  • mandatory insurance coverage for longer-term antibiotics in line with the ILADS standard of care if that is what the doctor prescribes
  • surveillance and a task force responsible for implementing a broad education/awareness program address both schools of thought and the broad spectrum of science
We NEED A VERY STRONG VOTE IN THE HOUSE TO SHAKE UP THE SENATE. 
 
YOUR TO-DO's:
 
1) call your representative and tell them this is the time - VOTE YES.
FIND YOUR REPRESENTATIVE HERE: 
 
TEMPLATE EMAIL CLICK HERE -- please make this YOUR OWN email -- representatives are much more responsive to personal emails - not so much to "form" letters. Tell your story and ASK them to vote YES.  Don't give up until you get an answer from them.
 
2) call and email The Speaker of the House (he is the one who will decide when to bring it out for a vote: Rep. Sam Smith from Punxsutawney, Telephone: (814) 938-4225,  E-mail: shsmith@pahousegop.com
 
3)  Post on LymeActionPA's Facebook page:  we want to hear from you when you contact them- tell us all how it goes, what their answer is. Demand a response - they represent you!   http://www.facebook.com/pages/Lyme-Action-PA/397803743661
 
THANK YOU! WHEN THIS IS PASSED - IT GOES TO THE SENATE - THE STRONGER THE HOUSE VOTE THE MORE PRESSURE ON THE SENATE! TOGETHER LET'S GET THIS PASSED!!!!
- LYMEACTIONPA




UNDER OUR SKIN will be showing at the MAJESTIC in GETTYSBURG PA, May 14. Click Here.





UNDER OUR SKIN SCREENING ANNOUNCED in at the DIETRICH in
TUNKHANNOCK PA, March 10. Click here.





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



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.







Tutoring Scholarship Available for
Children and Youth with Lyme!

MontCoLyme

is pleased 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) 






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 in FALL 2010.  

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/









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).