MOVED: LYME BILLS== IDSA is trying to STOP them == PLEASE SUPPOR

Discussion in 'Lyme Disease Archives' started by stranger, Apr 30, 2008.

  1. stranger

    stranger New Member

    Reading a message...
    Victoria





    LYME BILLS== IDSA is trying to STOP them! == PLEASE SUPPORT! 04/06/08 11:53 AM

    (new Press release at end of this thread about how the IDSA is trying to kill these bills so they can stop chronic lymies from being treated for any long-term problems/illness, added today 4/11/08)

    This alert is from the Lyme Disease Association. I strongly agree we should start out with how lyme has affected us &/or our families/friends.... and what you know about any co-infections you or your family/friends have... perhaps the overlap with CF/FM and other diseases you may have been dx'd with. The LDA also gives a standard letter you can use, or modify, etc.

    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...

    -------------
    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.

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



    Thanks!
    Victoria



    [This Message was Edited on 04/06/2008]



    [This Message was Edited on 04/11/2008]


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    mezombie



    Lyme Legislation 04/07/08 03:27 PM

    Bumping for Lymies...

    I've also posted this on other boards, Victoria.

    Gawd, I wish CFSers had this type of Congressional support!


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    Victoria



    new press release... 04/11/08 12:31 PM

    I really hope some (more) of us here will write in, given how many are increasingly found to have Lyme...

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

    It's 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.




    [This Message was Edited on 04/11/2008]


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    munch1958



    Please read IDSA's letter to Senator Edward Kennedy 04/22/08 12:16 PM

    http://www.idsociety.org/WorkArea/showcontent.aspx?id=10818

    &*^%!!!!!

    Enough said.


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    spinetti



    Victoria - 04/22/08 03:27 PM

    You bet I'll support this. My sister-in-law and brother, simply put, have gone through hell just to get effective treatment for her Lyme Disease. The way she was abused by some doctors was unbelievable.

    I'm pretty severely impaired by ME, but I'll get emails off to my senators (Illinois) and congressman (5th district).

    Thanks for letting me know here about these two bills.

    Best wishes, S


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    spinetti



    I got those emails off this morning 04/23/08 04:40 AM

    Boy, I wish we ME/CFSers had an organization with as much political savvy as the Lyme Disease Association.

    Thanks again for posting here.

    Best wishes, S


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    bettyg



    HR 741, S 1708, our 2 LYME bills in congress! 04/23/08 09:10 AM

    for updates on this, go to www.lymenet.org to ACTIVISM section and read the latest on what is going on.

    PHONE MARATHON took place fri, 4-18, and mon., 4-21.
    4-18, there were 2,000 calls in one office, ENERGY COMMISSION, and they complained to LDA PRES. PAT SMITH, that they were "inconvenienced"!!!!
    **********************************

    also in activism is a post from DAISE, about VETS/ACTIVE MILITARY and the lyme bills! read that too.

    Daise's a vet; has been denied VA BENEFITS for lyme treatment, etc.

    we have current female active duty military with LYME; the military drs. won't let them go to CHRONIC LYME LITERATE MDS. they can't get proper treatments and for LENGTH of time they need.

    so please go there for the latest ACTIVISM taking place! our lyme bills have been in CONGRESS FOR TEN YEARS!!!

    we're tired; we're mad!!! we won't stand for this any longer!


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    spinetti



    Victoria - Here's Senator Obama's reply 04/29/08 09:04 AM

    Thank you for contacting me regarding the Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2007 (S. 1708/H.R. 741).

    I understand and share in your concerns. Tick-borne diseases affect a significant percentage of the population and it is important that the federal government reach out and support preventative efforts.

    This legislation would provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee within the Office of the Secretary of Health and Human Services. The Secretary would be required to coordinate all Federal programs and activities related to Lyme and other tick-borne diseases.

    This legislation was re-introduced in the 110th Congress on June 27, 2007 and has been referred to the Committee on Health, Education, Labor, and Pensions, a panel on which I sit. I am proud to co-sponsor S. 1708 and will work to bring this important legislation to the Senate floor.

    Again, thank you for contacting me.

    Sincerely,

    Barack Obama
    United States Senator


    P.S. Our system does not allow direct response to this email. However, if you would like to contact me again, please use the form on the website: http://obama.senate.gov/contact/


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    liesandmorelies



    Thx Spinettie 04/29/08 09:13 AM

    Thx for posting Obamas letter.....Victoria your doing a great job. I'm going to write and call...

    LAML


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    Victoria



    Apparently-- 04/29/08 02:40 PM

    there's going to be a big demonstration May 7th in New Jersey at Congressman Pallone's office - sure wish I could be there for it as the bill's not been put on the calendar yet, and he's the key figure.

    I guess if we have a fax machine we should try to fax Pallone or call him, altho (as noted above I think), most are getting treated rudely as the office is being overwhelmed:

    Lyme Rights Protest
    Wednesday May 7, 2008
    11:00 am - 2:00 pm

    Location:
    Office of Congressman Frank Pallone,
    504 BROADWAY, LONG BRANCH, NJ 07740

    MAKE YOUR VOICE HEARD

    CONGRESS:
    ~ IS BOWING TO IDSA PRESSURE.
    ~ IS IGNORING LYME DISEASE.
    ~ IS LETTING THE LYME BILL DIE.
    ~ IS IGNORING LYME DISEASE & OUR ACCESS TO CARE.

    HELP THE LYME BILL & DEFEAT THE IDSA
    - HR 741 is not on the House Health Subcommittee calendar.
    - ONLY Congressman Pallone can put it there.
    - ONLY YOU can make him put it there.
    - Don't let the Lyme bill die! We only have weeks left!
    - Show Congressman Pallone: LYME PATIENTS HAVE THE RIGHT TO BE HEARD & WE NEED A BILL HEARING.

    REMEMBER:
    HR 741 THE LYME & TICK-BORNE DISEASES BILL
    Provides money, focus and an advisory committee on Lyme & tick-borne diseases. Hearing on bill enables scientists & doctors to educate Congress about Lyme issues.

    ADDITIONAL INFORMATION go to: http://www.LymeRights.org/ for directions, hotel info, bus routes and sign suggestions

    ---

    bottom line is of course for everyone to be firm but polite... they're trying to make us all nuts for wanting more research and answers, unbelievable!!!!


    [This Message was Edited on 04/30/2008]