Get Involved: IDSA's Lyme Guidelines Review and Lyme Legislation

Discussion in 'Lyme Disease Archives' started by mezombie, May 5, 2008.

  1. mezombie

    mezombie Member

    (Copied from a post by Jam338 on the CFS/FM board):

    Listen folks if you have struggled with getting Lyme Diagnosis or Treatment, or just care about this issue, we need to carefully scrutinize this Action Plan. This is a one time opportunity. It is a 60 day review period for this committee.

    This committee is required to only meet ONCE in person and as needed via teleconference. Trust me, NOTHING substantial can be done in just ONE meeting.

    They are required to only have ONE open public hearing with public input opportunity relevant to the topic of Lyme. YOUR stories are relevant to the topic of Lyme.

    The IDSA must conduct a live video broadcast of the hearing on its website which must include a transcript.

    The function of this Committee,in part, is to weigh the evidence of:

    A. the documentation presented by IDSA staff, and
    B. and the public testimony they receive at the ONE mtg.

    Therefore, those among you who can participate and present your stories at this one meeting need to do. Get your stories about the hardships of getting accurate diagnosis and effective treatment ready!

    Y'all know that when the CFS patient community rallied about the May 6 mtg in Washington DC next week it changed the entire landscape of that meeting. Y'all started calling and showing interests, writing letters/emails, and asking to be put on the agenda to give testimony. They had to expand their meeting, adjust the schedule, change the agenda, and make room. It showed the public and this patient group cares and wants to be involved and demands to be responded to.

    If you do not participate, know that the issue of Lyme will forever more be swept under the carpet. Patient activist must jump on this ONE time opportunity to throw this door wide open and put the sunshine of day in this dark corner!

    If there is no mass participation in this ONE event, the IDSA will be able thereafter easily shut down any questions about their process by saying....been there/done that....no one cared....our Guidelines were reviewed; end of story.

    Lymies, you must coalesce to leverage and get your stories heard at this yet unscheduled meeting!!

    The IDSA is required by the Agreement to obviously post the hearing information on their website so y'all need to be monitoring that. The Agreement doesn't say for how long they have to obviously advertise it so they might only put it up for a reasonably short time. You need to find who the Chair and committee members are.

    Regular and plentiful inquiries need to be made of the IDSA:
    IDSA
    1300 Wilson Blvd, Suite 300
    Arlington, VA 22209
    Phone: (703) 299-0200
    Fax: (703) 299-0204
    http://www.idsociety.org

    The direct link to their calendar of various upcoming meetings/events is:
    http://www.idsociety.org/Content.aspx?id=4244

    Their 2007-2008 Board of Directors is:

    Donald M. Poretz, MD, FIDSA, President
    Infectious Diseases Physicians
    3289 Woodburn Rd # 200
    Annandale, VA 22003
    Phone: (703) 560-7900

    Anne Gershon, MD, FIDSA, President-Elect
    Columbia University College of Physicians
    New York, New York

    Richard J. Whitley, MD, FIDSA, Vice President
    University of Alabama at Birmingham
    Birmingham, Alabama

    William Schaffner, MD, FIDSA, Secretary
    Vanderbilt University School of Medicine
    Nashville, Tennessee

    Barbara E. Murray, MD, FIDSA, Treasurer
    University of Texas Medical School
    Houston, Texas

    Henry Masur, MD, FIDSA, Immediate Past President
    National Institutes of Health
    Bethesda, Maryland

    Stephen Calderwood, MD, FIDSA
    Massachusetts General Hospital
    Boston, Massachusetts

    Dale N. Gerding, MD, FIDSA [2008],
    Hines VA Hospital
    Hines, Illinois

    Janet R. Gilsdorf, MD, FIDSA [2008],
    University of Michigan
    Ann Arbor, Michigan

    Sandra A. Kemmerly, MD, FIDSA,
    Ochsner Health System
    New Orleans, Louisiana

    Daniel R. Kuritzkes, MD, FIDSA,
    Brigham and Women’s Hospital
    Boston, Massachusetts

    Jan E. Patterson, MD, FIDSA,
    University of Texas Health Science Center at San Antonio
    San Antonio, Texas

    Edward J. Septimus, MD, FIDSA [2009],
    The Methodist Hospital Center
    Houston, Texas

    Robert A. Weinstein, MD, FIDSA [2009],
    John Stroger Hospital of Cook County
    Chicago, Illinois

    Michael S. Saag, MD, FIDSA [2007], HIVMA Representative
    University of Alabama at Birmingham
    Birmingham, Alabama

    Joseph St. Geme, MD, FIDSA, PIDS Liaison
    Duke University Medical Center
    Durham, North Carolina

    Trish M. Perl, MD, MSc, SHEA Liaison
    Johns Hopkins Medical Institute
    Baltimore, Maryland

    Mark A. Leasure, Chief Executive Officer
    IDSA Arlington, VA

    The IDSA needs to KNOW the public is interested, watching, monitoring, and participating in how they handle this.

    I am sure that the Lyme Boards must be planning something. If not, they should be. Those of you who participate over there need to make sure they are aware of the specifics, and that this whole thing could be short time lined and a done deal. Again, it requires only ONE open public meeting, so if that opportunity is missed....DONE.

    [For more information, see Twinofdar's "IDSA Ruling GREAT NEWS" thread]

    [This Message was Edited on 05/08/2008]
  2. victoria

    victoria New Member

    URGENT ACTION FOR THOSE WHO CANNOT ATTEND PROTEST TOMORROW, May 7, 2008

    [For state by state links go to: http://www.lymerights.org/html/call-in_campaign.html].

    Wednesday, May 7th is a really important day in Lyme history. We hope as many people as possible will be able to show up at the Lyme Protest outside Congressman Pallone's NJ office to publicize how Congress is bowing to IDSA pressure.

    FOR THOSE WHO CANNOT ATTEND: During the hours (11AM-2PM EST) that protesters are outside Congressman Pallone's office in Long Branch, NJ, we are asking that Lyme patients across the country make some very important phone calls of support.

    In order to make sure the calls are spread out during protest hours of 11 am - 2 pm ET, we are asking people call at 11 am in their time zone. Set your alarm for 11 am! If you can't call at that time go ahead and call at another time.

    Call representatives from your state only that sit on the two health committees.

    The Lyme bill is sitting in health committees in both the House & Senate ? they will die shortly if the Chairmen of these committees don't schedule them for a hearing soon. The Chairmen CAN BE SWAYED if enough committee members contact them to request a hearing on the Lyme bill. Click on your state to see which committee members to call.

    Alaska | Arizona | Arkansas | California | Colorado| Florida | Georgia | Illinois | Indiana | Iowa Kansas | Kentucky | Louisiana | Maine | Maryland | Massachusetts | Michigan | Mississippi Missouri | Nebraska | New Hampshire | New Jersey | New Mexico | New York | North Carolina |Ohio | Oklahoma | Oregon | Pennsylvania | Rhode Island | Tennessee | Texas Utah | Vermont | Virginia | Washington | Wisconsin | Wyoming

    Note: If your state is not listed here that means there are no representatives from your state that sit on either of the health committees. Please click here (link will be available Tuesday night) for other actions you can take if your state is not listed.

    Call Congressman Frank Pallone (NJ) 202-225-4671

    Chairman of the House Energy & Commerce Health Subcommittee. He has the power to schedule the Lyme bill for a hearing.

    Sample Phone Blurb

    I'm calling in to join the Lyme protest today - unfortunately I am too sick (or live too far away) to attend but I wanted my voice heard. The Connecticut Attorney General's settlement from last week has shown that patients were right, the IDSA is biased against chronic Lyme. Congressman Pallone needs to be making patients health a priority. He needs to schedule the Lyme bill for a hearing today!

    (leave your name, address, contact info)

    Call Senator Edward Kennedy (MA) 202-224-4543

    Chairman of the Senate Health, Energy, Labor & Pension (HELP) Committee. He has the power to schedule our bill for a hearing.

    Sample Phone Blurb

    I just got off the phone with Congressman Pallone's office where there is currently a patient protest being held regarding the Lyme disease bill. The Connecticut Attorney General's settlement from last week has shown that patients were right, the IDSA is biased against chronic Lyme. The Senate must act now. Senator Kennedy needs to make patient health a priority. He needs to schedule the Lyme bill for a hearing in his committee today! (leave your name, address, contact info)

    For further bill information www.LymeDiseaseAssociation.org, click on Legislation at top of page or e-mail LDAleg@hvc.rr.com

    [This Message was Edited on 05/07/2008]
  3. victoria

    victoria New Member

    as I said in my separate post, I called my federal reps, while the office person 'listened' and took my name etc down... I don't feel it's being given much credence. Sad too, because our senator is a doctor still practicing on a very limited basis, I believe, on top of being a politician...

    SO I will just fax a copy of my original letters to all of them including Pallone! Hopefully doing this will help lift me out of the black mood of depression due to feeling helpless today...
    ;)
    Victoria

  4. mezombie

    mezombie Member

    Making contact Thursday or Friday will still have an impact.

    FAX is best, but if you don't have a FAX, it's still worthwhile to call or email.

    Congressmembers' staff keep track of the number of contacts on a particular issue. The higher the number, the more likely the issue is to get attention.