Lyme Disease Support Group

Anyone in Pa that would like to get involved in support of house bill 272 being passed I will post the email and it tells you how you can get involved

They even mention that a founding member of the Idsa will be testifying in support of this bill, That is great news and maybe things are slowly changing in our favor

Here is the email

Thanks John

The PA House is going to hold a hearing on House bill 272 on Tuesday, Aug 30th, in Harrisburg!!

This is very big news -- there is a new sponsor for this bill this year, Rep. Hess, after the retirement of it's long proponent, Sen. Phillips.

There is new energy on this bill, and this hearing is critical -- the bill has been around the house so long, and passed 3 times.

We've been focused on the Senate side, and are now being told that representatives haven't heard much from constituents.

And there are a lot of new representatives that weren't there when the bill passed and was reviewed before. We need to change that!

We have a lot of support on this committee on the house side - if we have a good showing at this hearing, it is likely to be passed in the fall, and the pressure will mount on the Senate.

We have a terrific line up shaping up for the hearing including Dr. Robert Bransfield, ILADS president, and distinguished fellow of the APA, and President of APA New Jersey, etc., and believe it or not, we should have at least one IDSA, a founding member, testifying in support of our bill via teleconference, and we have another one submitting written testimony -- yup, IDSA docs supporting our bill!!!

We will also have a few other physicians -- we are trying to show medical practitioner support for the bill - there will be patient stories, but we want to hit the opposition's arguments hard with docs and scientists.

Patients need to show up to show their numbers and the criticality of acting on this bill -- we will ask for an open mike for patients to share a comments at the end.

If you come, be prepared with a brief comment for high impact! See web site for examples.

What you can do:

1) show up if you can - all details will be at www.lymeactionpa.com

2) submit written testimony by 8/30 (see below), please copy lymeactionpa@gmail.com

3) if you can't show up, call your Representative, and Rep. Gene DiGirolamo, 18th District (lower Bucks) who is the chair of the Human Services committee that has this bill - around or on the day of the hearing:

(215) 750-1017

(717) 783-7319

Please, please do what you can to pass the word on regarding this hearing, and to get as many people there as possible.

Check www.LymeActionPA.com and our Facebook page for updates - they will be coming in the next day or so.

Thank you... progress IS being made to so many of you who are reaching out, finding the patients, getting them involved, please keep in touch, and let us know you are out there, and in the fight to change things for Lyme patients in PA!!

Julia Wagner, Chair, LymeActionPA

P.S. if you want to get more actively involved, email lymeactionpa@gmail.com and we'll connect you with your local regional LymeActionPA coalition leader.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Human Services Committee of the PA House of Representatives will be holding a public hearing on HB 272, The Lyme and Related Tick-Borne Disease Education, Prevention and Treatment Act.

This legislation directs the Department of Health to establish a task force to address the issues surrounding Lyme disease and other tick borne infections.

The task force is directed to investigate and make recommendations to the Department regarding the prevention of Lyme disease in the Commonwealth.

The Department of Health is also directed to develop a program of public and professional education on Lyme disease in order to raise awareness of the long term effects of misdiagnoses and to develop public information and education on Lyme disease.

In addition, HB 272 further provides that a physician may prescribe long-term antibiotic therapy for late stage Lyme disease.

The bill requires all health care insurance policies must cover treatment for Lyme disease, including long term therapies, when prescribed by the treating physician.

The hearing will be held on Tuesday, August 30, 2011 from 10 am until 12 noon in Harrisburg, PA.

If you would like to submit WRITTEN testimony at this hearing, please send to Elizabeth Yarnell, Legislative Analyst, Human Services Committee by August 23rd if possible, August 30th, 2011 latest.

EMAIL TO: eyarnell@pahousegop.com

Sincerely,

Elizabeth Yarnell, Legislative Research Analyst

Human Services Committee

Pennsylvania House of Representatives

Republican Research

eyarnell@pahousegop.com

Post edited by: Bettyg, at: 08/22/2011 10:06 PM

john/penn. members, i'd like to suggest this based upon many other lyme conferences/hearings i've read minutes of:

audience has been allowed a TIMED 3-MINUTES SPEECH ONLY, so type/write it out and TIME YOURSELF; folks havebeen cut off in the middle of their spiels

i posted the info igot on this in ACTIVISM forum; my info has the SPECIFIC LOCATION OF THIS HEARING:

http://www.mdjunction.com/forums/lyme-disease-support- forums/lyme-disease-activism/1322242-penn-senate-lyme-bill- 1199-read-petition-below

i also have a special link for ALL STATE LYME BILLS ongoing.

i'm going to break yours up into smaller paragraphs so neuros like me can read since i've very involved in ACTIVISM of our bills even though i don't live in your state my friend, ok thanks for posting.

next time, take it tothe top post which is strictly PENN lyme bill ok; my thanks. then all info is in ONE area vs. 3.

hugs/prayers

bettyg, iowa activist, group leader, llmdcoordinator

Post edited by: Bettyg, at: 08/22/2011 10:10 PM

look how many are GOING TO WANT TO TALK! 3 min. goes fast so as you say start jotting down notes now of what you wish to address.

NOW PRIORITIZE them so you get this written down so you don't get flustered/tongue-tied and forget what you wanted to say so bad.

have your spouse/kids listen to you TIMING you and critiquing your speech ok.

let us know how it goes ok my friends sending you all my love, support, GUTSY ATTITUDE, and prayers all will go well for each of you.

john, i think it was 2.5 yrs. now when we were calling congress when our 2 lyme bills were there trying to get them to ADD our bills to their AGENDA FOR DISCUSSION. i called 4 OFFICE DAILY FOR 2 MONTHs!

1 NO. was one where i could leave a LIVE phone message...2-2.5 minutes per call. i read a touching letter from an iowan mother written by her brother that took 5-6 phone calls to read it all.

this was for IOWA'S ALEX HERMSTAD, 17, who died this year on valentine's day after her respirator was turned off per court's ruling in favor of her dad vs. her mom!! they ended up getting a divorce out of this deal.

bettyg, iowa activist, group leader, llmd coordinator.

so if you all can email Ms. Yarnell about your experiences maybe we can all help in getting this going for the residents of penna.

email must be there before August 30th, 2011 latest.

it sounds like we need to do this state by state.

this is my response from elizabeth.....

No, one doesn't need to be a resident of PA. You may submit written testimony on your experience.

Please keep your statement to one page and be sure to include your name.

You can email your statement to me.

Thank you for your interest.

Elizabeth Yarnell, Legislative Research Analyst

Human Services Committee

Pennsylvania House of Representatives

Republican Research

(717) 787-8110

eyarnell@pahousegop.com

Post edited by: neska, at: 08/23/2011 05:43 PM

i highlited the mainpoints and added that this was elizabeth's reply to YOU. bettyg, group leader, iowa activist, llmd coordinator

Post edited by: Bettyg, at: 08/23/2011 09:07 PM

i reread john's 1st post and i feel if we are going to do this, we should also do as PENN ACTIVISM COMMITTEE WANTS .... quoting them....

submit written testimony by 8/30 (see below), please copy lymeactionpa@gmail.com

so i copied this from penn's online website; we need to emphasize about OUR experiences or our LOVED ONES in 1 page brief to the point letter.

the bill reads ....

House Bill 272 directs the Department of Health to establish a task force to address the issues surrounding Lyme disease.

This task force will make and implement recommendations regarding the gaps in education, prevention and surveillance of Lyme and other tick borne diseases in Pennsylvania.

The bill will also ensure that Physicians can apply the two different standards of care that exist today for the diagnosis and treatment of Lyme disease.

Insurance companies have “cherry picked” which standards of care they will approve – effectively “practicing medicine” instead of doctors.

With this bill, physicians will be able to apply longer-term therapies to treat Lyme disease that does not respond to shorter courses.

Research has long demonstrated persistence of these infections which are related to syphilis.

Lastly the bill ensures that insurance companies will pay for the treatment the physician prescribes, putting medical decisions back in the hands of physicians and patients where they should be made.

DONE just now! EMPHASIZE HOW LONG YOU'VE BEEN SICK; how long MISDIAGNOSD & by how many drs!!, your OUT OF POCKET EXPENSES,

i'll get started on mine now! we to 1 page will be difficult!!

bettyg, iowa activist, group leader/llmd coordinator

Post edited by: Bettyg, at: 08/23/2011 09:53 PM