NEW LYME BILLS == IDSA trying to stop- write your reps!!

Discussion in 'Lyme Disease Archives' started by victoria, Apr 6, 2008.

  1. victoria

    victoria New Member

    This alert is from the Lyme Disease Association. I would add that we should start out with 1 paragraph at least as to how lyme has affected us &/or our families/friends, perhaps also the confusing overlap with other diagnoses many have received over the years...

    I remember reading that every letter (maybe now fax is the same?) used to be counted as 40 votes... not sure how many each represent now, but I'm guessing it's graded as to effort... it appears faxes are #1 now... altho everything is appreciated and needed even if only an email.

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    There are two bills now before the Congress, House HR741 and Senate S1708. They are bipartisan and are referred to by title as the "Lyme and Tick" Borne Disease Prevention, Education, and Research Act of 2007."

    Our federal bills are stuck in subcommittees and we need to get them moving very soon, or they will die. We have been asking the Feds to help since 1998, and have gotten nothing yet. In 2006 the Fed spent 18 times more for each case of west Nile as they did for a case of Lyme disease, in spite of Lyme being much more common. Is it our turn yet?

    Senators and Congressman need to hear from their constituency, which is how they will judge their vote on these Bills which are critical to the Lyme community. It is of the highest importance for all to contact their Senators and one Representative and express your desire that they support this legislation.

    If you are a Lyme patient, tell a BRIEF story of how the disease has affected your health, finances, career and any other relevant information about you. If you know a Lyme sufferer, tell how you have seen that person or persons affected by the illness.

    Ask that the Bills move from committee to the floor and be given serious consideration.

    To read the bill language, go to http://thomas.loc.gov/ and type in HR
    741.

    For more information, who to contact in your state, form letters, etc, go to http://www.lymediseaseassociation.org/HR741/HR741.html

    Time is of the essence, so please call, fax, or email as soon as possible. Please keep in mind that FAXES make the greatest impact, or a phone call to the DC office is a good second choice. Emails are not read, only counted. Everyone needs to make their best effort, because the side that wins is the side that is most heard!

    THANK YOU! And please feel free to forward this to anyone who may be interested in helping.

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    Thanks!
    Victoria




    [This Message was Edited on 04/06/2008]
    [This Message was Edited on 04/11/2008]
  2. EricaCFIDS

    EricaCFIDS New Member

    If you go to this link below, each person can click on their state to find out who to specifically call for where they live:

    http://www.lymediseaseassociation.org/HR741/HR741.html#Actions

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    I received this from the California Lyme Disease Association:

    You make the call--or actually, six calls.

    Right now, federal Lyme legislation is stalled in Congressional committee. If it's not released for a vote soon, the Lyme bill will die.

    This plea is being sent to members of the California Lyme listserve. Assuming you live in California, please call the following six members of the House subcommittee dealing with this bill.

    Cong. Henry Waxman 202 225-3976
    Cong. George Radanovich 202.225-4540
    Cong. Mary Bono Mack 202 225-5330
    Cong. Lois Capps 202 225-3601
    Cong. Anna Eshoo 202 225-8104
    Cong. Hilda Solis 202 225-5464

    (These are numbers of their DC offices. Please call during DC business hours.)


    Sample phone call script:

    My name is _________ and I am a resident of California. I (or my family member)have suffered terribly from Lyme disease for more than ____years. Thousands of other Californians are afflicted with this disease as well, and not enough is being done to help them. I know that Congressman/woman ____ is on the subcommittee dealing with HR 741, the Lyme and tick-borne disease bill. I need him/her to ask committee chairman Frank Pallone to schedule a hearing on HR 741. Thank you.

    ----------------------------------------------------------

    If you are NOT a Californian and you want to know who to call representing your state, or you want more information about the bill, click:

    http://www.lymediseaseassociation.org/HR741/HR741.html#Actions

    [This Message was Removed on 04/06/2008, by EricaCFIDS]
  3. victoria

    victoria New Member

    The California Lyme Disease Association, the national Lyme Disease Association and Time for Lyme distributed the following press release on April 9, 2008--

    regarding the IDSA's recent attempt to kill federal legislation that would provide funding for Lyme research and give patients a voice in research needs.

    To help get this bill passed in the Senate and House, see instructions below the following release.

    Lyme Disease Physicians and Patients
    Expose Research Group's Ploy to Silence Them

    Already caught up in an anti-trust investigation,
    IDSA opposes research bill in order to maintain
    monopoly over Lyme diagnosis and treatment options

    Washington, DC - Physicians specializing in treating chronic Lyme disease and a national coalition of Lyme disease patients and their families today accused a medical research group of trying to exercise monopoly control over research on Lyme and tick-borne diseases.

    "We're very disappointed," said Pat Smith, president of the national Lyme Disease Association (LDA), responding to a letter to Congress by the Infectious Diseases Society of America (IDSA) that seeks to deny patients a voice regarding the research needed to better understand the disease.

    Lyme disease is a serious bacterial infection that develops from the bite of an infected tick. The disease is often misdiagnosed or goes untreated, causing many patients to suffer persistent health problems, including neurological disorders, crippling muscle and joint pain, disabling fatigue, psychological disorders, and even death. Even when Lyme disease is caught early and treated with a short course of antibiotics, the debilitating symptoms can persist and require additional longer-term treatment.

    In March, IDSA wrote Congress attacking the Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2007, introduced by Chris Smith (R-NJ) and Bart Stupak (D-MI) in the House, and Christopher Dodd (D-CT), Charles Schumer (D-NY) and Chuck Hagel (R-NE) in the Senate. The broadly supported bipartisan bill calls for acceleration of Lyme disease research and creates a new federal advisory committee made up of the full range of scientific viewpoints on Lyme, including a seat for patient advocacy groups.

    The IDSA is currently under investigation by the Connecticut Attorney General for abuse of monopoly power and exclusionary conduct in formulating its Lyme disease guidelines, which were developed by a panel that held significant commercial interests in diagnostic tests, vaccines, and consulting arrangements. In its letter to Congress opposing the Lyme Bill, the IDSA failed to mention this ongoing investigation.

    IDSA researchers have virtually controlled Lyme disease research for the past 30 years amidst ongoing controversy surrounding its guidelines, which deny patients the right to treatment options and undermine the ability of physicians to use their clinical discretion in treating patients. IDSA provides private health insurance companies with the basis for denying long-term treatment for chronic Lyme disease.

    The California Lyme Disease Association (CALDA), national Lyme Disease Association (LDA) and Time for Lyme (TFL) are non-profit organizations that were founded by individuals who had personal experience with Lyme disease, in order to address the lack of research, education and support services available for this newly emerging infection. (end of press release)
    ---
    If the IDSA gets its way, this bill will die without ever having a public hearing. If you don't want that to happen, here's what to do:

    Right now, the bill is stalled in two Congressional subcommittees (one in House, one in the Senate.) If the committee chairmen do not release the measures for a vote, the Lyme bills will die. We would then have to wait until next year to start the process all over again.

    Click here for a list of states with members on the committees:

    http://www.lymediseaseassociation.org/HR741/HR741.html#Actions

    If your state is listed, click for contact information. Urge your representatives to contact their committee chairmen and request a hearing for the Lyme disease bill. (S 1708/HR 741) If it is a senator on your list, have him/her contact Senator Edward Kennedy (MA), chairman of the Senate Health, Education, Labor and Pension Committee. If it is a member of the House, have him/her contact Congressman Frank Pallone (NJ), chairman of the Energy and Commerce Health Subcommittee.

    Phone your representatives in their DC offices during regular business hours. It's quick and easy. The staff will tally all calls they receive.

    If your state is not listed, see "other actions needed by individuals" at the above link.

    Actual bill text:

    http://thomas.loc.gov/home/thomas.html

    Click Bill # and type S 1708 or HR 741.
  4. victoria

    victoria New Member

  5. FreethinkerX

    FreethinkerX New Member

    .....this bill was written to fail...


    besides who really needs more commitees? And who shall be appointed to those committees?

    Pat Smith and her minion have been undermining the Lyme community for years, come on sheeple can you understand
    it? She has done more harm then good.

    Just ask Dr. Jones, Dr. Jemsek and half the folks at ILADS.