Tuesday, June 22, 2010

The public hearing advocating the merits of PA Senate Bill 1199 occurred today in Harrisburg from 10 am. until 12:30 p.m. Hats off to Julia Wagner for her tireless efforts in creating the momentum needed to make this hearing a reality. The hearing can be viewed in it's entirety on Senator Don White's website... click HERE to view the video. Click HERE to view the agenda and submitted documents.

Let's talk about the hearing. Open forum. Please comment.... and comment some more.

Friday, April 23, 2010

IDSA Ruling: No changes will be made to 2006 Guidelines

The IDSA released its ruling yesterday stating that, in a unanimous vote, the 2006 Lyme Disease guidelines will not be amended. See the full text of their report and press release here: http://www.idsociety.org/Content.aspx?id=16501

Pat Smith, President of the Lyme Disease Association, has issued a response, and calls for the Attorney General of Connecticut to act: http://www.lymediseaseassociation.org/

Never before has it been more blatantly obvious that we cannot wait for the IDSA to change its guidelines, nor should we have to. The IDSA guidelines are, as disclosed in their own Practice Guidelines, only recommendations and they have no authority to impose required action, and are never to be used to usurp the individual professional judgment of medical professionals: "They are not intended to supplant physician judgment with respect to particular patients or special clinical situations. IDSA considers adherence to the guidelines listed below to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances." (found on http://www.idsociety.org/content.aspx?id=9088)

Where do we go from here? Let's use the energy created by the IDSA's unfortunate decision as a catalyst for change. Let's talk about next steps forward. What do you think and what ideas do you have?

Tuesday, April 6, 2010

Under Our Skin

Under Our Skin is making its way around the country because of the hard work of volunteer activists who recognize its importance in this struggle we face to create awareness... not only awareness of the disease which is difficult, confusing, and debilitating but also the political controversy in which we inadvertently find ourselves.

If you have seen the movie please post your reactions and comments here. Let's have a conversation about it. If you have not seen the movie, tell us about that as well. Do you need a screening planned for your area?

Monday, March 22, 2010

Welcome to Lyme Action PA Blog!

We needed a place to share information, share ideas, and support each others' advocacy efforts to bring LYME DISEASE into the public eye and to create powerful changes for Lyme Disease sufferers at the Legislative Level! So, welcome to Lyme Action PA Blog. To return to our home page, Lyme Action PA, click here.

First Question: How can we raise visibility around PA Senate Bill 1199.