posted
More progress on Lyme legislation. Saw it on another Lyme website and wanted to share here:
August 3, 2009 Vol 2, Issue 7
Action Alert #7
from Pat Smith, President, Lyme Disease Association, Inc. (LDA)
In This Issue
Chronic Lyme Language Passed
Key Senate Language
Key House Language
Thanks To All
CHRONIC LYME LANGUAGE PASSED IN APPROPRIATIONS
On July 30, 2009, the Senate Appropriations Committee passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill.
The vote was 29 to 1.
Senator Christopher Dodd (CT-D), and Appropriations Subcommittee Chair, Tom Harkin (IA-D) were instrumental in passage of the language. The next step is a vote on the Appropriations bill by the entire Senate expected this week.
On July 24, 2009, the full House passed Lyme disease language contained in the Fiscal Year 2010 Labor, Health & Human Services, Education Appropriations bill (HR 3293).
The vote was 264 to153.
Congressman Christopher Smith (NJ-R), author of the language; House Appropriations Committee Chair, David Obey (WI-D); and U.S. House Appropriations Committee Members Frank Wolf (VA-R) and Nita Lowey (NY-D) were instrumental in its inclusion.
SENATE APPROPRIATIONS BILL - KEY LANGUAGE
The language which was adopted encourages CDC (Centers for Disease Control & Prevention) to develop more accurate tests and improve testing to account for acute and "chronic Lyme disease;" and to examine feasibility of a national surveillance system and a physician education program which includes the full spectrum of scientific research.
It also encourages NIAID (National Institute of Allergy & Infectious Diseases) to sponsor a conference which represents all scientific viewpoints and intensify research to include "mechanisms of persistent infection."
It encourages AHRQ (Agency for Healthcare Research and Quality) to create a peer review literature data base that includes "persistent infection."
It encourages the Secretary of HHS (Health & Human Services) to improve government agency coordination, advise them of priorities, and identify future research needs within HHS and involve those agencies in diagnosing & reporting Lyme disease.
HOUSE APPROPRIATIONS BILL - KEY LANGUAGE
In the strongest language in both houses, the Committee "directs" the Secretary to review the coordination of HHS efforts on 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 to develop & adopt improved diagnostics for Lyme disease. HHS shall submit a report to the House and Senate Appropriations Committees with the findings from this review by Sept. 30, 2010.
The language includes an increase of $3.66 million for the Centers for Disease Control & Prevention (CDC) for Lyme, the only increase for diseases in the NCZVED Division, which is the one that contains Lyme. CDC's budget for Lyme has hovered just over $5 million for several years.
It also encourages CDC to improve diagnostics and "improving utilization of diagnostic testing to account for the multiple clinical manifestations of acute and chronic Lyme disease," to have objective to determine long-term course of illness, to develop national reporting and public and "physician education program which includes the full spectrum of scientific research...."
It encourages NIH (National Institutes of Health) to intensify research on tick-borne diseases including research increasing understanding of the full range of Lyme disease processes including mechanisms of persistent infection and to support research on development of sensitive and accurate diagnostic tests for Lyme disease capable of distinguishing between active and past infections.
It encourages NIH to sponsor a scientific conference on Lyme and other tick-borne diseases to represent the broad spectrum of scientific views on Lyme disease.
THANKS TO ALL
The national Lyme Disease Association (LDA), Time For Lyme (CT) and the California Lyme Disease Association have been working as a team in Washington, DC, for federal issues on Lyme and tick-borne diseases.
Thanks to the LDA's 34 partner groups in 23 states and all the other Lyme groups and individuals throughout the country, significant progress is being made.
The coordinated efforts to contact the House and the Senate Appropriations Committee members was a huge success!
Chronic Lyme disease and persistent Lyme infection are terms included in both the House & the Senate Appropriations bills. Federal agencies will now look more closely at this aspect of Lyme disease.
Congratulations - we ARE making a difference!
[ 08-05-2009, 12:30 PM: Message edited by: MorningSong ]
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This is a big deal and is very good for all of us. Thanks for sharing it Morning...
Thanks to everyone who listened to the Calls to Action and rallied their representatives to make this possible!
And of course, thanks to the LDA and those working day in and day out to help us all.
posted
According to this article, the Senate will be voting on this bill this week. Very important week.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
Does anyone know what the CDC has been doing with the $5 million per year it's been receiving in the past? Are their directors just pocketing the money or what? It just doesn't sound very hopeful hearing that more money will go to the CDC for lyme when they already get money and do nothing.
Posts: 499 | From Indiana | Registered: Oct 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree pryorka. Where is the pudding? I want to see it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I am encouraged that the legislation language is even giving voice to "Chronic Lyme". Although I too wonder where the CDC 5 million is going, much progress is being made in both the House and the Senate.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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bettyg
Unregistered
posted
did you notice IOWA'S CHAIR, TOM HARKIN, was instrumental in this?
he/i have talked PERSONALLY many times; i get 2-3 emails from him monthly for all the contacts i have with him.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
How do you lobby the CDC to adopt a study? How did the HIV people do it, back in the day?
Is this a letter writing thing? How do we figure out what is worth endorsing?
I'm trying to imagine what would get the insurance companies to cough up.....total blank
Posts: 18 | From Houston, Texas | Registered: Aug 2009
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bettyg
Unregistered
posted
pinelady
good one!!
if you can think of a tactful post, PM me, and i'll be happy to forward your suggestions onto his office!!
his des moines director for state retired since last time i spoke with him/her when they were in my city.
3lymies .... good question, perhaps tincup, phyllis mervine, or other LONG TIME ADVOCATES will come along and tell us all what they know ... hopefully!
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
Do any of these articles sound somewhat familiar? How sad!
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