Topic: Good news!!! Mo money, better tests, more over site, NON-biased science
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
FOR IMMEDIATE RELEASE
June 20, 2009, Wall Township, NJ −
The Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA) are pleased to announce that on July 17, 2009, the Fiscal 2010 Labor, HHS Appropriations Committee reported out language on Lyme disease which was written and introduced by Congressman Christopher Smith (R-NJ).
U.S. House Appropriations Committee Members Frank Wolf (R-VA), and Nita Lowey (D-NY) were instrumental in its inclusion.
The next step is consideration by the full US House of Representatives.
The language includes an increase of $3.66 million for Lyme disease, from $5.27 million to $8.93 million, for the Centers for Disease Control & Prevention (CDC), the only increase for diseases in the National Center for Zoonotic and Vector-Borne, and Enteric Diseases.
CDC's budget for Lyme has been dropping over several years now.
The language directs the Secretary of the U.S. Department of Health and Human Services to review and coordinate her department's Lyme activities and to report back on that review by September 2010.
It also encourages CDC to improve diagnostics and the National Institutes of Health (NIH) to provide a conference on the full spectrum of Lyme disease, allowing for patient input.
COMMENTS FROM ADVOCATES
The three Groups thank Congressman Chris Smith, Congressman Frank Wolf, and Congresswoman Nita Lowey for their bi-partisan support in this effort to provide more answers on Lyme and tick-borne diseases.
They also express deep gratitude to Lyme patients everywhere who responded to alerts and contacted their Congressional Members on Appropriations.
Pat Smith, President, national LDA, who has been spearheading this effort nationally, states ``We are extremely pleased that House Appropriators have recognized the need to focus much more attention and funding on all aspects of Lyme disease, especially chronic.
As Lyme case numbers increase, with over 270,000 new cases in 2007 alone, tens of thousands of patients are becoming disabled annually from chronic disease, due to lack of early diagnosis or lack of appropriate treatment, thus the need for a definitive test.''
``Lyme disease affects children more than any other age group,'' added Diane Blanchard, and Deb Siciliano, co-presidents of TFL, and they may be out of school for months and years.
Thus, there is an urgent need for the Committee language for dissemination of accurate information to both the public and to physicians, so we can prevent children from acquiring Lyme disease and educate their physicians on the disease if they do get it.''
The need for a broad spectrum of scientific viewpoints has been pushed for many years by patients.
According to Attorney Lorraine Johnson, Executive Director of CALDA, ``Patients have been excluded from the process too long and their participation in this conference is critical to ensure that patient interests take precedence over commercial industry interests.
We need to stop mischaracterizing the opinions of a few as science and consider the full spectrum of the emerging science in Lyme to make progress. ''
LANGUAGE IN APPROPRIATIONS
``Tick-borne Diseases. − The Committee directs the Secretary to review the coordination of efforts across HHS operating divisions with respect to tick-borne diseases to ensure that: a broad spectrum of scientific viewpoints is represented in public health policy decisions,
accurate information is disseminated to the public and physicians, and actions are taken by the Department that will foster significant progress in the development and adoption of improved diagnostics for Lyme disease.
The Department shall submit a report to the Committees on Appropriations of the House of Representatives and Senate with the findings from this review not later than September 30, 2010.
``Lyme Disease. − The Committee encourages CDC to expand its activities related to developing sensitive and more accurate diagnostic tools and tests for Lyme disease, including the evaluation of emerging diagnostic methods and improving utilization of diagnostic testing to account for the multiple clinical manifestations of acute and chronic Lyme disease;
to expand its epidemiological research activities on tick-borne diseases to include an objective to determine the long-term course of illness for Lyme disease;
to improve surveillance and reporting of Lyme and other tick-borne diseases in order to produce more accurate data on their prevalence;
to evaluate the feasibility of developing a national reporting system on Lyme disease, including laboratory reporting; and to expand prevention of Lyme and tick-borne diseases through increased community-based public education and creating a physician education program that includes the full spectrum of scientific research on the diseases.
``Lyme Diseases. − The Committee encourages NIH to intensify research on tick-borne diseases including research that will increase understanding of the full range of Lyme disease processes and the physiology of Borrelia burgdorferi, including the mechanisms of persistent infection.
Recognizing NIH's collaborative role with CDC and other agencies in the development of diagnostics, the Committee encourages NIH to support research that may lead to the development of more sensitive and accurate diagnostic tests for Lyme disease capable of distinguishing between active and past infections.
The Committee encourages the Director, in collaboration with the Director of NIAD, to sponsor a scientific conference on Lyme and other tick-borne diseases.
The Committee believes that the conference should represent the broad spectrum of scientific views on Lyme disease and should provide a forum for public participation and input from individuals with Lyme disease.''
California Lyme Disease Association www.lymedisease.org 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 the most prevalent vector-borne disease in the U.S. today.
posted
kind of funny reading this today..."kind of like our small step for mankind"
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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bettyg
Unregistered
posted
tincup,
i think 1st date should be july 20; not june 20 ??
dave, good one; been watching the news clips from 40 yrs. ago.
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
EXCELLENT!!!!
Now do we need to pester our Representatives about this?
Do we know how long it will take for this to be heard in the House, now that it's been put into an Appropriations bill?
I'm guessing that e-mails/calls of gratitude to U.S. House Appropriations Committee Members Frank Wolf (R-VA), and Nita Lowey (D-NY) and Rep Chris Smith for their continued legislative advocacy might be in order.
What do you think?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Wahooooooo! This is great news. And as someone said, one small step... it is somewhat fitting for the date.
Also, the journey of a thousand miles starts with a single step, but I think we're way past that first step - thanks to people like Tincup and bettyg and all the other selfless dedicated activists out there. Thank you all from the bottom of our hearts. I hope to join your esteemed ranks someday.
The Appropriations Committee's language here is inspiring and energizing, because it appeals to logic and reason. What a breath of fresh air.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My rep is on the committee that did this and he's already on board about Lyme
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
nenet, thanks for the really nice compliment !!
could someone show the 3 emails to thank chris smith, frank wolfe, and woman you mentioned please? heartfelt thanks so we all can email them ... hugs/kisses
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EXCELLENT!!!! ![[Big Grin]](biggrin.gif)
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