LYME RESEARCH LEGISLATION- write your federal representatives!

Discussion in 'Fibromyalgia Main Forum' started by victoria, May 1, 2006.

  1. victoria

    victoria New Member

    Considering how many people here have come up with Lyme and other tick/vector borne diseases as an underlying basis for their CFIDS/FM, you might want to contact your federal
    legislators today and urge them to support

    1) Lyme and Tick-Borne Disease Prevention, Education, & Research Act of 2005 in the Senate
    (S. 1479 Chris Dodd/Rick Santorum),


    2) its house companion bill (H.R.3427 Chris Smith/Sue Kelly).

    Up for consideration in the legislature this session, these federal bills authorize an additional $20 million a year for Lyme disease research, education and prevention for the next five years.

    (This seems to be my night for posting political stuff I guess! but it is SO important to write to your representatives via internet or snail mail...

    for every 'regular' letter your rep receives, it is estimated at least 40 other voters feel the same way... we have always gotten responses from our representatives!!! so they are reading their letters!)


    [This Message was Edited on 05/01/2006]
  2. patches25

    patches25 New Member

    We really do need to get political to get care for those of us who are ill. Isn't that a shame.

    Yes by all means we need to support this action too. Thanks. E.
  3. victoria

    victoria New Member

    redsox just posted this info on the immunesupport Lyme board, I'm copying/pasting it here, also here are the links to find your senators and congresspeople:

    Here is the link to the bill in case you want to read more about it. Click bill number and type in HR 3427

    If you don't have time to write, call your representative.

    Call their DC and District offices. Tell the aides who answer you are a CONSTITUENT and you are calling to urge congressman/woman _________ to sign on to bill HR 3427 (Smith and Kelly). (and your senator for the senate version). It is the Lyme and Tick-borne disease Prevention, Education, and Research Act of 2005.

    Sample letter:

    Here is a sample letter: If possible please try to personalize a little.

    Your first & Last name

    Your street address

    City, NY and zip code

    Your phone number

    Month day, year

    The Honorable First & Last name of congress person/Senator (example: The Honorable John Smith)

    Address Line

    City, State zip code

    phone / fax

    Dear Last Name of Rep/Sen: (example: Dear Representative Smith:)

    I urge you to sign on to bill HR 3427, “The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005” (H.R. 3427 Chris Smith/Sue Kelly) (or) (S. 1479 Chris Dodd/Rick Santorum). According to the CDC, New York State, at 28%, has the highest number of cases of Lyme disease in the entire country from 1994-2003. New York can not afford to sit back and do nothing!

    Lyme disease is almost eight times more commonly reported than West Nile Virus (WNV) in the U.S., yet a significantly higher percentage of funding is being set aside to prevent and treat WNV. In 2004, the following was reported:

    CDC reported 19,804 cases of Lyme, CDC reported 2,539 cases of WNV

    CDC spent $5.6 million CDC spent $34.6 million

    NIH spent $28 million NIH spent $43 million

    Total $33.6 million spent on Lyme Total $77.6 million spent on WNV

    According to the CDC, only 10 percent of cases meeting its criteria for Lyme disease are reported. Therefore 198,040 new cases meeting the criteria occurred in 2004 in the U.S. In addition, many other cases that do not meet the CDC criteria occurred in 2004.

    Lyme disease, the most common vector-borne disease in the United States, is usually contracted by the bite from a bacteria-infected tick. In humans, infection with Lyme disease bacteria can lead to early symptoms such as severe headaches, debilitating fatigue, joint pain, and skin rashes, while long-term symptoms can lead to problems related to the central nervous system including the brain, heart, joints and other musculo-skeletal problems. Symptoms of Lyme disease vary for each individual patient, and also vary in intensity over the course of the disease.

    The long-term cost of Lyme disease to families, school systems, the health care system and the economy is astounding. According to a study published in 1993 in Contingencies, an actuarial trade publication, the cost to society for Lyme disease was about one billion dollars per year. Cases have doubled since then, so today’s costs are probably $2 Billion or more annually! The average treatment and diagnosis and lost wages related to Lyme disease was $61,688 per year per patient.

    Despite the prevalence, severity and economic costs of this illness, patients with Lyme disease are having increased difficulty obtaining diagnosis and treatment for these diseases, and being restored to health. These patients struggle an average of 1.2 years before they are correctly diagnosed. Lyme disease is reported in 49 states. Children are in the highest risk category for contracting the disease, since people are commonly infected in their own backyard. The effects on students can be staggering. A CDC study reported median school absences of 140 days in New Jersey and a Columbia University Medical Center study reported a 22-point drop in IQ.

    It’s an outrage, and you are in a unique position to right this wrong. This legislative session, your sponsorship for “The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005” (H.R. 3427 Chris Smith/Sue Kelly) in the house, or its Senate companion bill (S. 1479 Christopher Dodd/Rick Santorum) is essential. These bills will improve surveillance and prevention of Lyme disease, the development of accurate diagnostic tests and fund additional research to determine long-term course of illness and the effectiveness of different treatments.

    These bills authorize an additional $20 million a year for Lyme disease research, education and prevention for the next five years. They will also establish a much needed Tick-Borne Diseases Advisory Committee to ensure interagency coordination and communication among federal agencies, medical professionals and patients/patient advocates.

    I am sure you agree that Lyme disease patients deserve more from our health care system. Your support today will help secure more funding to support research, education and prevention of Lyme in the future. We implore you to join your colleagues in voting for the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2005.

    (I would also add/insert your own experience if any in this letter, that is what is really important... ie, it is not officially recognized in Georgia, yet my son has it without ever visiting the NE, and change the letter accordingly. I'm not sure about the emphasis on NY state, I think it should be stressed that this is much more widely dispersed than it seems! Victoria)


    Don’t forget to sign your letter!

    Your first & last name

    [This Message was Edited on 05/02/2006]
  4. victoria

    victoria New Member

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