Topic: Congress Addresses Lyme Disease Issues for YOU!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lyme Disease Association Press Release
Congress Addresses Lyme Disease Issues
July 17, 2011. The all volunteer national Lyme Disease Association (LDA) is pleased to announce the introduction of a bill and proposed legislative actions that focus attention on the growing concerns surrounding Lyme and tick borne diseases.
Congressman Christopher Smith (R-NJ) introduced HR-2557, the Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2011, on Friday, July 15, 2011, along with cosponsors Frank Wolf (VA), Tim Holden (PA), and Chris Gibson (NY).
Congressman Smith�s bill, HR-2557, requires the Secretary of Health and Human Services to establish a Tick-Borne Diseases Advisory Committee to address a variety of important issues.
The Committee will be charged with advising Federal agencies on priorities related to Lyme and tick-borne disease issues and will be composed of scientists, representatives from government agencies, health care providers and patient representatives.
The Committee is charged with ensuring that a broad spectrum of scientific and stake-holder viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced.
Congressman Smith, Chairman of the Congressional Lyme Disease Caucus for the past seven years, has worked diligently to foster greater knowledge about tick-borne diseases over the years.
Amongst his many Lyme-related endeavors, he hosted a Lyme and Tick-Borne Diseases Forum last summer in Wall Township, NJ, for health officials, medical professionals and the public, with over 300 people in attendance. Pat Smith of the LDA was one of the guest speakers.
Senator Richard Blumenthal (D-CT) has plans to highlight legislation to combat the spread of Lyme disease.
He will meet with volunteer patient advocates from the Connecticut based Lyme disease group, Time for Lyme (TFL), an affiliate of the Lyme Disease Association, at the Connecticut Agricultural Experiment Station in New Haven on Monday, July 18, 2011.
Senator Blumenthal, who served an unprecedented five terms as Attorney General in Connecticut, is known for his efforts to make real and lasting difference in the lives of the people. He has been a long-time public defender of Lyme disease patients rights.
The Lyme Disease Association (LDA), an organization that seeks to eliminate tick-borne diseases by funding research, educating the public, and providing scientific conferences for doctors, is grateful to Congressman Smith, Senator Blumenthal, the bill cosponsors and staff for their enduring commitment to improve the health of countless patients suffering from Lyme and tick-borne diseases.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There have been some changes to make it a new and improved version.
Plus we have two wonderful and VERY smart and experienced sponsors leading the way. Ones who know the IDSA bull when they smell it coming and who are ready and waiting with a big shovel.
In the House bill there is no provision for funding as there once was, other than the Committee needs, which is standard.
Funding, as you know, will be hard to get in these recent hard times for all.
Good news is, as before, there will be members from the Lyme Community on the Committee. These will be the ONLY voting members.
And this is important...
"... such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee."
(i) At least 4 members from the scientific community representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.
(ii) At least 2 representatives of tick-borne disease voluntary organizations.
(iii) At least 2 health care providers, including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases.
(iv) At least 2 patient representatives who are individuals who have been diagnosed with a tick-borne disease or who have had an immediate family member diagnosed with such a disease.
(v) At least 2 representatives of State and local health departments and national organizations that represent State and local health professionals.
There will also be a handful of federal and state agencies represented, but they will not have voting rights.
This should balance the playing field a lot more than it has been over the years so that ALL science and resources are at the table making decisions.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
H.R.2557 -- To provide for the establishment of the Tick-Borne Diseases Advisory Committee.
(Introduced in House - IH)
HR 2557 IH
112th CONGRESS 1st Session
H. R. 2557
To provide for the establishment of the Tick-Borne Diseases Advisory Committee.
IN THE HOUSE OF REPRESENTATIVES July 15, 2011
Mr. SMITH of New Jersey (for himself, Mr. WOLF, Mr. HOLDEN, and Mr. GIBSON) introduced the following bill; which was referred to the Committee on Energy and Commerce
A BILL
To provide for the establishment of the Tick-Borne Diseases Advisory Committee.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVISORY COMMITTEE.
(a) Establishment- Not later than 180 days after the date of the enactment of this Act, the Secretary of Health and Human Services (referred to in this Act as the `Secretary') shall establish within the Office of the Secretary an advisory committee to be known as the Tick-Borne Diseases Advisory Committee (referred to in this section as the `Committee').
(b) Duties- The Committee shall advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can--
(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;
(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;
(3) ensure interagency coordination and communication with constituency groups;
(4) ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and
(5) advise relevant Federal agencies on priorities related to the Lyme and tick-borne diseases.
(c) Membership-
(1) APPOINTED MEMBERS-
(A) IN GENERAL- The Secretary shall appoint the voting members of the Committee from among individuals who are not officers or employees of the Federal Government.
(B) GROUPS- The voting members of the Committee shall include the following:
(i) At least 4 members from the scientific community representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.
(ii) At least 2 representatives of tick-borne disease voluntary organizations.
(iii) At least 2 health care providers, including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases.
(iv) At least 2 patient representatives who are individuals who have been diagnosed with a tick-borne disease or who have had an immediate family member diagnosed with such a disease.
(v) At least 2 representatives of State and local health departments and national organizations that represent State and local health professionals.
(C) DIVERSITY- In appointing members under this paragraph, the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.
(2) EX OFFICIO MEMBERS- The Secretary shall designate, as nonvoting, ex officio members of the Committee, representatives overseeing tick-borne disease activities from each of the following Federal agencies:
(A) The Centers for Disease Control and Prevention.
(B) The National Institutes of Health.
(C) The Agency for Healthcare Research and Quality.
(D) The Food and Drug Administration.
(E) The Office of the Assistant Secretary for Health.
(F) Such additional Federal agencies as the Secretary determines to be appropriate.
(3) CO-CHAIRPERSONS- The Secretary shall designate the Assistant Secretary for Health as the co-chairperson of the Committee. The appointed members of the Committee shall also elect a public co-chairperson. The public co-chairperson shall serve a 2-year term.
(4) TERM OF APPOINTMENT- The term of service for each member of the Committee appointed under paragraph (1) shall be 4 years.
(5) VACANCY- A vacancy in the membership of the Committee shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.
(d) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, after providing notice to the public of such meetings, and shall meet at least twice a year with additional meetings subject to the call of the co-chairpersons.
Agenda items with respect to such meetings may be added at the request of the members of the Committee, including the co-chairpersons.
Meetings shall be conducted, and records of the proceedings shall be maintained, as required by applicable law and by regulations of the Secretary.
(e) Report- Not later than 1 year after the date of the enactment of this Act, and annually thereafter, the Committee, through the Director of the Centers for Disease Control and Prevention and the Director of the National Institutes of Health, shall submit a report to the Secretary. Each such report shall contain, at a minimum--
(1) a description of the Committee's functions;
(2) a list of the Committee's members and their affiliations; and
(3) a summary of the Committee's activities and recommendations during the previous year, including any significant issues regarding the functioning of the Committee.
(f) Authorization of Appropriations- Of the amounts made available to the Department of Health and Human Services for general departmental management for fiscal years 2012 through 2016, there is authorized to be appropriated $250,000 for each of such fiscal years to carry out this Act.
Amounts made available to carry out this Act shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act, except that no voting member of the Committee shall be a permanent salaried employee.
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Tincup:
The CDC has lead the effort on the controversy. Granted Steere and Kempler are of like mind but it was the CDC's position the disease was over diagnosed and over treated.
The IDSA has relyed on Steere's diagnosis criteria and have felt the medical risks outweighted the long term benefits.
A long term effort is required and we have to prove chronic lyme by culture.
I wonder what ever happened to the Rheus Monkey study which was to be done by 2000 / 2001 time frame.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
What can we do to help ensure the passage of a comprehensive bill that supports lyme patients and LLMDs and LLNDs? Should we be writing to our representatives in the house and senate?
Thanks for posting this info.
Posts: 873 | From WA | Registered: Dec 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Interesting press. But I don't think Shapiro likes us. HA!
Blumenthal takes Lyme disease fight to the Senate
Blumenthal Quote- "Today for me culminates more than a decade of work and probably a decade more, because I've seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease," Blumenthal said.
He added that chronic Lyme disease can last for years and interrupt schooling, work, play and divide families."
One point for Blumenthal!
CT advocates and author- "Chronic Lyme advocates say some patients get false negative results in existing tests. "Once an accurate test is developed, the controversy goes away," Siciliano said.
But Dr. Eugene Shapiro, a Yale professor of pediatrics and epidemiology who specializes in Lyme disease, called that idea "nonsense."
Diagnostic technology can always be improved, but studies don't support the idea that people with longstanding infection get false negative test results, he said, and improving diagnosis won't end the controversy."
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
t9- you are right! Absolutely! And it would be nice to have more culture ability and proof.
But for now we have tons of sick patients who were well before they got Lyme and are no longer well, even after taking the IDSA "recommended" treatment.
For now, I am sure you'll agree, we push for help for those who suffer.
````````````````````````````````````````````` Hopeful4 said "Should we be writing to our representatives in the house and senate?"
That would be GREAT! Everyone needs a voice and I am pleased to hear you are interested!
The LDA is working on updating their info to help you and others who want to do something positive to help the overall situation.
Once Senator Blumenthal's bill is introduced, I am sure you will be notified either here or....
Have you signed up for the LDA Newsletter/Action Alerts?
Those who haven't should. The info they send out helps you to help yourself... and your actions help them help you and everyone else. Did that make sense?
Look on the bottom right side of the main page to sign up.
posted
I am all for this. I will send a letter, email and phone call when this is appropriate.... EVERYONE who is sick should be in on this...
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Great! Love to hear that! Will advise ASAP the steps to take. VERY simple, but VERY important.
Thanks Lymeboy.
I was going through some old stuff and ran across this Floor Debate video clip. Want to get a charge, a kick, a smile? Try this....
posted
I just signed a letter from Congressman Bernie Saunders sent to President Obama about the budget/deficit talks.
The letter was posted on his website and folks had the opportunity to add their names/address etc to the letter. In 4 days there were over 100,000 signatures.
I think something similar would be a way for all of our voices to be heard. The letter could be typed up and send to the bill sponsors/co-sponsors and posted on their website. Then all of the LD advocacy groups could get the information out. I am wondering how many signatures we could get asking them to pass it. If we sent letters to our own state reps, it would help.
I am fairly new to LD, but am willing to help get the word out. Anyone good at writing lettters?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
This is done a lot for legislation, both for and against. So what do you all think? Do you think it would be helpful? Do this when timely and have millions sign it to go to our Congressional reps?
Posts: 13116 | From San Francisco | Registered: May 2006
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Mr. White who seems appauld in this is now back peddling. If you live in Mr. White`s area or P.A. or know people who do - you should contact him to say how important this bill is. The P.A Lyme group is working really hard and need all the support they can get.
Posts: 131 | From ontario | Registered: Oct 2010
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by lymeboy: I am all for this. I will send a letter, email and phone call when this is appropriate.... EVERYONE who is sick should be in on this...
Count me in!
Anyone know exactly who we should contact, when, etc?
I will also pass the info along at our monthly lyme meeting.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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lymeboy
Unregistered
posted
I think a petition is a really great idea. While everyone that sings the petition should also call/ email/ write their reps, many of us will not. A petitioin is a good "easy" way to get a large consensus.
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