posted
OK - Now I know you all have heard that phrase:
"You can catch more flies with honey..." (and I can't remember the rest because I have LD, nor do I really understand WHY one would want to catch flies other than to kill them...I digress.)
WE NEED TO ENCOURAGE Rep. Sue Kelly to FORGE AHEAD - to CONTINUE to fight for HR 3427 in the coming days/weeks/months ahead.
I am, therefore, asking, PLEADING, that you send her a sweet little note THANKING HER for CO-SPONSORING the COMPROMISE bill with Rep. Chris Smith.
Rep. Kelly really did make many compromises for the benefit of this bill -- for US! And she needs to be acknowledged for that - that she did what was best for the Lyme community.
Therefore - PLEASE write, FAX, or even CALL her at the following:
Rep. Sue Kelly 2182 Rayburn HOB Washington, DC 20515 Phone: 202-225-5441 Fax: 202-225-3289
Naturally, you can email her - but that ONLY works if you are her constituent!
So - my suggestion is to write, fax, or call - and be SWEET & GRATEFUL and remind her how sick you are and how much you still NEED HER help to get this bill passed!
Now most of you may realize that now there will be MUCH focus in Congress with regards to the aftermath of Katrina (and rightly so...) THEREFORE - we need to really PUSH for this BILL.
WE MUST KEEP THIS ISSUE BEFORE THE EYES OF OUR ELECTED OFFICIALS IF WE WANT TO SEE THIS PASS THIS YEAR!
Thank you for your continued support of this bill. We MUST get SOMETHING passed - something that will EMPOWER us just a little bit more!
Thank you & happy writing, faxing, or calling!
Hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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posted
post the content of the new bill and then i will call. i hope its what i think it is.
Posts: 2 | From Oregon Lyme Disease Network | Registered: Sep 2005
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Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005 (Introduced in House)
HR 3427 IH
109th CONGRESS
1st Session
H. R. 3427 To 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.
IN THE HOUSE OF REPRESENTATIVES
July 26, 2005 Mr. SMITH of New Jersey (for himself and Mrs. KELLY) introduced the following bill; which was referred to the Committee on Energy and Commerce
A BILL To 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.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the `Lyme and Tick-borne Disease Prevention, Education, and Research Act of 2005'.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.
(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.
(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.
(4) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.
(5) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other diseases, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.
(6) Studies indicate that the actual number of tick-borne disease cases are approximately 10 times the amount reported.
(7) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.
SEC. 3. 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 are 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- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v) of subparagraph (B).
(B) GROUPS- The groups described in this subparagraph include the following:
(i) Scientific community members representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.
(ii) Representatives of tick-borne disease voluntary organizations.
(iii) 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) 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) 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 of 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) Authorization of Appropriations- For the purpose of carrying out this section, there is authorized to be appropriated $250,000 for each of the fiscal years 2006 through 2009. Amounts appropriated under the preceding sentence 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.
SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, SURVEILLANCE, PREVENTION, AND RESEARCH OF LYME AND OTHER TICK-BORNE DISEASES.
(a) In General- The Secretary, acting as appropriate through the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Commissioner of Food and Drugs, and the Director of the Agency for Healthcare Research and Quality, as well as additional Federal agencies as the Secretary determines to be appropriate, and in consultation with the Tick-Borne Diseases Advisory Committee, shall provide for the coordination of all Federal programs and activities related to Lyme and other tick-borne diseases, including the activities described in paragraphs (1) through (4) of subsection (b).
(b) Activities- The activities described in this subsection are the following:
(1) DEVELOPMENT OF DIAGNOSTIC TESTS- Such activities include--
(A) the development of sensitive and more accurate diagnostic tools and tests, including a direct detection test for Lyme disease capable of distinguishing active infection from past infection;
(B) improving the efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; and
(C) providing for the timely evaluation of promising emerging diagnostic methods.
(2) SURVEILLANCE AND REPORTING- Such activities include surveillance and reporting of Lyme and other tick-borne diseases--
(A) to accurately determine the prevalence of Lyme and other tick-borne disease;
(B) to evaluate the feasibility of developing a reporting system for the collection of data on physician-diagnosed cases of Lyme disease that do not meet the surveillance criteria of the Centers for Disease Control and Prevention in order to more accurately gauge disease incidence; and
(C) to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each State.
(3) PREVENTION- Such activities include--
(A) the provision and promotion of access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme and other tick-borne disease;
(B) increased public education related to Lyme and other tick-borne diseases through the expansion of the Community Based Education Programs of the Centers for Disease Control and Prevention to include expansion of information access points to the public;
(C) the creation of a physician education program that includes the full spectrum of scientific research related to Lyme and other tick-borne diseases; and
(D) the sponsoring of scientific conferences on Lyme and other tick-borne diseases, including reporting and consideration of the full spectrum of clinically-based knowledge, with the first of such conferences to be held not later than 24 months after the date of enactment of this Act.
(4) CLINICAL OUTCOMES RESEARCH- Such activities include--
(A) the establishment of epidemiological research objectives to determine the long term course of illness for Lyme disease; and
(B) determination of the effectiveness of different treatment modalities by establishing treatment outcome objectives.
(c) Authorization of Appropriations- For the purposes of carrying out this section, and for the purposes of providing for additional research, prevention, and educational activities for Lyme and other tick-borne diseases, there is authorized to be appropriated $20,000,000 for each of the fiscal years 2006 through 2010. Such authorization is in addition to any other authorization of appropriations available for such purpose.
SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DISEASES .
(a) In General- Not later than 18 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.
(b) Content- Reports under subsection (a) shall contain--
(1) significant activities or developments related to the surveillance, diagnosis, treatment, education, or prevention of Lyme or other tick-borne diseases, including suggestions for further research and education;
(2) a scientifically qualified assessment of Lyme and other tick-borne diseases, including both acute and chronic instances, related to the broad spectrum of empirical evidence of treating physicians, as well as published peer reviewed data, that shall include recommendations for addressing research gaps in diagnosis and treatment of Lyme and other tick-borne diseases and an evaluation of treatment guidelines and their utilization;
(3) progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease; and
(4) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne diseases.
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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To the Esteemed Rep. Sue Kelly 2182 Rayburn HOB Washington, DC 20515 Phone: 202-225-5441 Fax: 202-225-3289
September 15, 2005
Dear Representative Kelly,
This is the first letter I have ever written in my entire life to a government official. I have just found out that you are a co-sponsor of Bill HR 3427, ``Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 1995'', along with Representative Chris Smith.
I wish to attempt to convey to you my deepest and overwhelming gratitude for being so instrumental in the developing of this Bill. Thank you from the bottom of my heart. I also would like to show my strong support for this Bill and encourage you to continue the marvelous work you are doing in getting it passed.
I will be cheering you on in California, as will several hundred of my Lyme-inflicted friends across the United States whom I have met through a wonderful website called Lymenet.org. Each one of us has a unique story to tell as well as many similarities in our stories: We are very very sick, many of us have been sick for years and received many wrong diagnoses, and it was only through perseverance and painful struggle that we were able to get information, tests, and treatment for this horribly debilitating disease.
If Bill HR 3427 passes, this opens up the door for awareness to be raised. Never in the history of the world has awareness been more needed than now regarding Lyme disease. So much suffering and pain can be averted if the hundreds of thousands of people who have it can get properly diagnosed.
I myself have been bedridden and in excruciating pain for almost two years now, have seen nine doctors, and lost my job because of Lyme disease. Sadly, it was not a doctor who first suggested Lyme, but my own dogged and desperate research that finally led to a proper diagnosis.
I hope that soon, and with the passing of HR 3427, no one will have to suffer in agony for quite as long as so many of us have.
Once again, thank you from the bottom of my heart and please continue to do what needs to be done to get this bill passed.
Very Truly Yours,
Alison Paulson, age 33
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Um....thank goodness I caught the typo in time...it is the Act of 2005, not 1995, where apparently my brain is right now. Arrrgh.
A.
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Ok, me again. I just also sent an e-mail to my LOCAL representative, Richard Pombo.
Also, I found a way to track this bill through the house. Go to http://www.thomas.loc.gov and enter in "HR 3427" to the search. By doing this, you can track its progress.
Cheers,
Alison (but you can call me "Twitchy" because that's what I seem to be doing today - must be herxing)
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Representative Kelly had gathered 49 supporters of her earlier bill, and Smith had gathered 20+. I hope they will be able to get those Reps to sign on with the new bill.
Here are the congresspeople who have signed on as co-sponsors so far.
If you don't see your Representative's name here, get in touch with them to inform them of the new bill and get them to co-sponsor it. The state and district number are in brackets after the name.
Co-Sponsors of the Smith/Kelly bill
Rep Boswell, Leonard L. [IA-3] - 9/7/2005 Rep Gilchrest, Wayne T. [MD-1] - 9/7/2005 Rep Goode, Virgil H., Jr. [VA-5] - 9/7/2005 Rep Kelly, Sue W. [NY-19] - 7/26/2005 Rep Moore, Dennis [KS-3] - 9/7/2005 Rep Owens, Major R. [NY-11] - 9/7/2005
Where are all our advocates? You know, our fellow Lymie Loudmouths?
We must find them and say: HELP!
If you know of someone who has shown interest in the past with regards to advocacy - please use our new wonderful PM feature to write them and tell them: HELP!
I also would like to suggest that we POSITIVELY ENVISON that both bills pass - in the House AND in the Senate.
Personally, I feel there is great POWER in a collective faith -- so if we COLLECTIVELY envision these bills passing, as well as do our work of jumping up and down making much noise about these bills...then I think we have a much better chance, indeed!
I BELIEVE IT CAN HAPPEN!
With FAITH, hugs &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Am going to call her in the morning.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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Hello - Thanks for the info. and the refresher post to keep up support. I will send another letter and request the other folks in our support group to do the same. We need more representation in NJ to speak up and take action about this disease.
Any other plans to generate support for this bill aside from writing a letter to Ms. Kelly and our local senator?
Thanks
Posts: 77 | From Morris County, NJ | Registered: Jul 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Actually, this bill is the House Bill, so you should contact your local Representative. That info is available at the "Thomas" site, and you can e-mail the Rep directly.
The Senate Bill is S1479 and was sponsored by Sen. Dodd and Sen. Santorum. It says essentially the same thing as the House bill.
It has only 2 sponsors so far. So you certainly should contact the 2 senators for your state. (each state has two, there are nearly 500 representatives)
Since long e-mails probably aren't read in entirety, and the numbers count in convincing politicians where to throw their weight, you could just copy the following and paste it into the e-mail box for your senator or rep. The more we contact our congress people, the more support the bills will get.
Please support S1479 (sponsored by Senators Dodd and Santorum) by becoming a co-sponsor of this bill for Lyme and Tick-borne Disease Prevention, Education, and Research. Lyme disease is becoming an epidemic in our country and help is needed now. Thank you
Or Please support HR 3427 (sponsored by Representatives Smith and Kelly) by becoming a co-sponsor of this bill for Lyme and Tick-borne Disease Prevention, Education, and Research. Lyme disease is becoming an epidemic in our country and help is needed now. Thank you
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
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