Progress on HR 1179 - Lyme Disease

Discussion in 'Lyme Disease Archives' started by Shalome1990, Mar 26, 2009.

  1. Shalome1990

    Shalome1990 New Member

    All, this takes 2 minutes please call!!!

    I received this from the California Lyme Disease Association. I have called already.

    We need at least 100 cosponsors of the federal bill for it to move forward. So far we have 10. Here are their names. If you don't see your congressperson on this list, you have a job to do.

    Rep. Chris Smith [NJ] author
    Rep Wolf, Frank R. [VA-10] - 2/25/2009
    Rep Stupak, Bart [MI-1] - 2/25/2009
    Rep Holden, Tim [PA-17] - 2/25/2009
    Rep Sires, Albio [NJ-13] - 3/17/2009
    Rep Murphy, Patrick J. [PA-8] - 3/17/2009
    Rep Honda, Michael M. [CA-15] - 3/17/2009
    Rep Langevin, James R. [RI-2] - 3/17/2009
    Rep Walz, Timothy J. [MN-1] - 3/17/2009
    Rep McHugh, John M. [NY-23] - 3/17/2009
    Rep Platts, Todd Russell [PA-19] - 3/17/2009

    My congressman, Mike Thompson, is not on the list, though he cosponsored previous Lyme bills, so I expect him to sign up. I have called 3 times so far, keeping the pressure on. If more people were doing this, maybe he would have signed by now!

    If you don't know who your congressperson is, you can find out here by putting in your zip code.

    http://www.visi.com/juan/congress/

    Remember, you only have one Congressperson, so it's just one call.

    I find phone calls the easiest. They take about 2 minutes. You will be talking to an aide. That is fine. Sometimes they will ask for your zip code so write that down ahead of time if you have brain fog.

    All you have to say is

    *I'd like to ask the congressman to cosponsor the Lyme bill, HR 1179.*

    Anything else you want to add is gravy. Your story, or anything with numbers, like amount spent on LD, number of neighbors afflicted, income before you lost your job because of LD, etc. Write down anything you think you want to say, so you don't forget, if that's a problem for you.

    We are expecting the introduction of the Senate version soon. Then we will have another job - contacting our senators.

    Each one of us needs to do this. This means YOU! If everyone thinks someone else will do it, congressmen will not get any calls and we won't get our bill.
    --

    Thanks,
    Shalome
  2. Nanie46

    Nanie46 Moderator

    Thanks, Shalome!

    Hopefully more people will take a minute to do this. We need all the help we can get.
  3. munch1958

    munch1958 Member

    Please read the entire text of the bill here:

    http://www.govtrack.us/congress/bill.xpd?bill=h111-1179

    According to the bill the CDC reported 27,444 new cases of LD in 2007 which is a 38% increase. We know the numbers are at least 10% higher. Way many more people are suffering with LD than have been reported. The highest incidence of LD has always been in children from ages 5 - 14.

    As a person who contracted LD at the age of 11, I do not support this bill the way it is written. We do not need a Tick-Borne Diseases Advisory Committee controlled by the Secretary of Health & Human Services.

    Think about this...

    How is this going to change anything?

    What if some of the current IDSA guideline authors get on this committee? Suppose Steere is on it? or McSweegan?

    There is plenty of research that's already been done to show that IDSA is lying. All one has to do is read their patents and their peer reviewed literature contained in Pubmed.

    The bill appoints a committee of the same tired people doing the same tired things with Lyme disease. What is this bill going to change?

    The "secretary of the committee" has the power to appoint the voting members of the committee which are to include the following:

    At least 4 members from the scientific community;

    At least 2 representatives of TBD voluntary organizations;

    At least 2 health care providers, including at least 1 full time practicing physician with experience in acute and chronic TBDs;

    At least 2 patient reps who have been diagnosed with tick borne diseases or who have had an immediate family member with TBIs;

    At least 2 reps of State and local health departments & national organizations that represent State and local health professionals.

    Ex Officio Members are:

    the CDC;
    the NIH;
    the Agency for Healthcare Research and Quality;
    the FDA;
    the Office of the Assistant Secretary for Health; AND

    Such additional Federal agencies as the Secretary determines to be appropriate.

    Co-chairpersons to serve a 2 year term with the Secretary designating the Assistant Secretary of Health as the co-chairperson of the committee. The appointed members of the Committee shal also elect a public co-chairperson. The public co-chairperson shall serve a 2 year term.

    Term = 4 years

    Vacancy on committee -- to be filled in the same manner as original members

    Public Meetings (except as otherwise determined by the Secretary) to be held at least 2X per year with additional meetings subject to the call of co-chairpersons. The public will be notified.

    Report: Not later than 1 year after the Act and annually thereafter the Committee thru the Director of the CDC and Director of the NIH shall submit a report to the secretary. The report is to contain a list of the Committee's members and their affiliations and a summary of the Committee's activities & recommendations including issues within the committee.

    For this they are asking for $250K per fiscal years 2010 - 2014 to cover committee members expenses. The bill also asks for $7.5 million for the first year and 5 million for the remaining 3 years after that.

    This bill gives even more money to a committee to adress Lyme. Isn't that what the CDC and NIH are supposed to already be going? Where is or has our money been going? What is going to be different about this committee when it's going to be made up of the same agencies? They don't acknowledge chronic LD now. What's going to make them change their minds here?

    I'm afraid that some of the same researchers will be given more money to bungle what they've already screwed up. I think they'll just enforce the same old status quo rather than funding real research and better testing for patients. They are not suddenly going to give money for research to all new and different people!

    Chronic LD exists according to IDSA guideline authors, their associates, and the government. But it is NOT acknowledged to physicians or their patients. As patients, we know the truth. They've already shifted the consensus of opinion under government funded grants to reflect a down played illness that requires no treatment beyond the first 4-6 weeks.

    After that, they've just wished it away and/or written it out of existance. This make no sense when we know the syphilis spirochete which is far less complex crosses the blood, brain, barrier. The disease model for LD is the same as it is for syphilis. Why can one spirochete do something but another can't? Because the IDSA says so -- that's why?!!!

    The CDC, NIH, IDSA, and the FDA have NOT done a stellar job with LD so far. What makes anyone think this will change things? Will this committee have some magic wand to wave? Are they suddenly going to admit they were wrong about LD all along? I just don't see this happening with this line up of agencies.

    I simply can't support legislation that will continue to keep things as they are now. We're all sick. We NEED a congressional INVESTIGATION not another useless committee.