Lyme Disease Lobby-Education Day
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Date: June 22, 2005
Where: U.S. Capitol, Washington, D.C.
Who: YOU, your family, & your friends
Meet at: The Rayburn House Building’s Cafeteria (vending machine side) at 10 am & walk the halls in support of H.R. 2526 to 5pm. The formal picture of us all is at 4:15pm.
What: Educate the House Offices about Lyme disease & other Tick-Borne Disorders, request each sign-on to HR 2526, and encourage health aids to attend an Education program about Tick-Borne Diseases.
Dear Friends:
We invite you to join everyone at the Capital in Washington, D.C. to educate the members of the House of Representatives about Lyme disease and request that each one sign on to H.R.2526 –
the Tick-Borne Advisory Committee (T-Bac) that was recently introduced into Congress by Representative Sue Kelly’s office.
Please email me at lymefnd@aol.com or call me at 860-870-0070 if you can join us. I have a growing list of volunteers and we look forward to everyone’s help. I will send more details to those who contact me to attend.
My best,
Karen Vanderhoof-Forschner, Lyme Disease Community Caucus
Groups Supporting H.R. 2526
- Lyme Disease Society
- Lyme Disease Foundation
- Michigan Lyme Disease Association
- National Capital Lyme Association
- Ticked-Off and Fed-up
- Greater Hartford Lyme Disease Support Group
- Lyme Disease Foundation Midwest Task Force
- North Carolina Lyme Disease Foundation, Inc.
- Lyme Disease Network of South Carolina
- Lyme Disease Association of Massachusetts
- Hope to Heal Lyme, Inc.
• Lesley Fein, MD - Representing physicians
Bill Update - H.R 2526
ACTION ITEM:
Bill H.R 2526:
Giving the Public a Voice in Government Lyme & Tick-Borne Activities!
Dear Friends,
Great news! We have been talking about federal Lyme legislation and now we have a bill.
We hope that everyone will become an active educational voice for your members of Congress. Here is the scoop
On Monday, May 23, 2005, Representative Sue Kelly introduced
into the House of Representatives, H.R. 2526 - Tick-Borne Advisory Committee
Act. This legislation establishes a Tick-Borne Advisory Committee in order
to provide the public with a voice into the Lyme and other tick-borne
disorder Federal activities. This legislation is very similar to the LIFT
Act that passed the Senate several years ago and was supported by all of the
Lyme groups, but unfortunately did not become a Bill.
The single most important aspect of this legislation is that the public has
100% of the voting rights into what the committee decides! This public voice
is very important because the government already coordinates its own
activities with other government agencies through the "Lyme Disease
Coordinating Committee," that was established in 1992 by the National
Institutes of Health.
Now, with your help, we can pass H.R. 2526, giving the public a strong voice
into the governments Lyme activities!
Help empower the public by calling as many House Members as possible and
request they sign-on to this Bill. Let's get this Bill passed by July 1,
2005! We now control our own destiny and must get 216 House Members to
sign-on to the Bill so it can pass the House of Representatives.
Please email us when you get a commitment from your representative to
cosponsor this very important bill.
Together, we will make a better future for our families and friends!
Sincerely,
Lyme Disease Foundation, Inc.
Lyme Disease Society,
Michigan Lyme Disease Association,Inc.
LDF-Midwest task Force,
National Capital Lyme Disease Association,
Greater Hartford Lyme Disease Support & Action Group,
Lesley Fein, MD (NJ),
T.O.F.U. Inc., Pennsylvania
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
YOUR ACTION:
1. Call your Congressional House member (Representative) and ask to speak
with the "Aid" in charge of "Lyme disease & Health Care Issues." You can
find out who your representative is by going to
http://www.visi.com/juan/congress/.
2. Ask him/her to sign-on to "H.R.2526" by contacting Richard Olson in Rep.
Sue Kelly's office at 202-225-5441. You can use the script below to help
you.
3. In addition, call, fax, and email these instructions to your friends &
family and ask them to call their Representatives.
LEGISLATIVE SCRIPT
"Good Morning/Afternoon,
I'm ____your name)______ calling to request __(Representative's name)____ to
sign-on to H.R. 2526 a bill that would establish an advisory committee for
Tick-Borne disorders.
This legislation will help those suffering from Lyme disease & other
Tick-Borne disorders in your state and throughout the United States by
establishing a Tick-Borne Advisory Committee to provide a public voice into
government Lyme disease and Tick-Borne activities.
Please contact Richard Olson at 202-225-5441 in Representative Sue Kelly's
office and add your name to the list of sponsors.
Thank-you, "
(Your Name)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Quick Facts
including Ehrlichiosis, Babesiosis, Bartonella, Rocky Mountain Spotted
Fever, Relapsing Fever, Tick Paralysis, Tularemia, and more.
of all vector-borne infections in the United States.
increased by 40%.
of someone with Lyme disease.
that Lyme disease cost this country approximately $1- $2 billion per year in
increased medical costs, lost productivity, prolonged pain and suffering,
unnecessary testing, and costly delays in diagnosis and inappropriate
treatment.
Tick-Borne disease have increased 25-fold since national surveillance of it
began in 1982. Between 1980 and now 244,003 case have been reported and
accepted by the CDC as qualified cases. Studies have shown that the actual
numbers of Tick-Borne disease cases are approximately 10 times the amount
reported due to poor surveillance of the disease.
diagnosis and treatment for these diseases, and being restored to health.
Because of differences in medical and scientific opinion, clinicians and
other providers of health care services (testing laboratories and
intravenous teams) face retaliation from insurance companies and medical
licensure boards based on their diagnosis and treatment of patients that
vary from the CDC's surveillance criteria.
If you know someone in another state that would be willing to help please do
not delay, call them now.
Below is the Bill in its entirety.
Tick-Borne Disorders Advisory Committee Act of 2005 (Introduced in House)
HR 2526 IH
109th CONGRESS
1st Session
H. R. 2526
To establish a Tick-Borne Disorders Advisory Committee, and for other
purposes.
IN THE HOUSE OF REPRESENTATIVES
May 23, 2005
Mrs. KELLY (for herself, Mr. HINCHEY, Mr. KILDEE, Mr. MCNULTY, Mr. BRADLEY
of New Hampshire, Mr. WOLF, Mr. PAYNE, Mr. ENGLISH of Pennsylvania, Mr.
SWEENEY, Mr. GILCHREST, Mr. HASTINGS of Florida, and Mr. FRANK of
Massachusetts) introduced the following bill; which was referred to the
Committee on Energy and Commerce
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
A BILL
To establish a Tick-Borne Disorders Advisory Committee, and for other
purposes.
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 `Tick-Borne Disorders Advisory Committee 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) Despite 17 years of Federal funding, there is still no test that can
accurately determine infection and then prove bactericidal cure so that
proper treatment is adequately achieved. Persistence of symptomatology in
many patients without reliable testing makes treatment of patients more
difficult.
(5) If an individual with Lyme disease does not receive treatment, such
individual can develop severe heart, neurological, eye, and joint problems.
(6) 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 disorders, such as ehrlichiosis, babesiosis, and other strains
of Borrelia. All of these diseases in 1 patient makes diagnosis and
treatment more difficult.
(7) Although tick-borne disease cases have been reported in 49 States and
the District of Columbia, about 90 percent of the 20,000 cases have been
reported in the following 10 States: Connecticut, Pennsylvania, New York,
New Jersey, Rhode Island, Maryland, Massachusetts, Minnesota, Delaware, and
Wisconsin. Studies have shown that the actual number of tick-borne disease
cases are approximately 10 times the amount reported due to poor
surveillance of the disease
(8) Persistence of symptomatology in many patients without reliable testing
makes treatment of patients more difficult.
(9) According to studies, Lyme disease costs the Nation between
$1,000,000,000 to $2,000,000,000 each year in increased medical costs, lost
productivity, prolonged pain and suffering, and costly delays in diagnosis
and inappropriate treatment.
SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISORDERS ADVISORY COMMITTEE.
(a) Establishment of Committee- Not later than 180 days after the date of
enactment of this Act, there shall be established an advisory committee to
be known as the Tick-Borne Disorders Advisory Committee organized in the
Office of the Secretary.
(b) Duties- The Committee shall advise the Secretary of Health and Human
Services and the Assistant Secretary for Health regarding how to--
(1) assure interagency coordination and communication and minimize overlap
regarding efforts to address tick-borne disorders;
(2) identify opportunities to coordinate efforts with other Federal agencies
and private organizations addressing tick-borne disorders; and
(3) develop informed responses to constituency groups regarding the
Department of Health and Human Services' efforts and progress.
(c) Membership-
(1) APPOINTED MEMBERS-
(A) IN GENERAL- The Secretary shall appoint voting members to the Committee
from among the following member groups:
(i) Scientific community members.
(ii) Representatives of tick-borne disorder voluntary organizations.
(iii) Health care providers.
(iv) Patient representatives who are individuals who have been diagnosed
with tick-borne illnesses or who have had an immediate family member
diagnosed with such illness.
(v) Representatives of State and local health departments and national
organizations who represent State and local health professionals.
(B) REQUIREMENT- The Secretary shall ensure that an equal number of
individuals are appointed to the Committee from each of the member groups
described in clauses (i) through (v) of subparagraph (A).
(2) EX OFFICIO MEMBERS- The Committee shall have nonvoting ex officio
members determined appropriate by the Secretary.
(d) Co-Chairpersons- The Assistant Secretary for Health shall serve as the
co-chairperson of the Committee with a public co-chairperson chosen by the
members described under subsection (c). The public co-chairperson shall
serve a 2-year term and retain all voting rights.
(e) Term of Appointment- All members shall be appointed to serve on the
Committee for 4 year terms.
(f) Vacancy- If there is a vacancy on the Committee, such position 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.
(g) Meetings- The Committee shall hold public meetings, except as otherwise
determined by the Secretary, giving notice to the public of such, and meet
at least twice a year with additional meetings subject to the call of the
co-chairpersons. Agenda items can be added at the request of the Committee
members, as well as the co-chairpersons. Meetings shall be conducted, and
records of the proceedings kept as required by applicable laws and
departmental regulations.
(h) Reports-
(1) IN GENERAL- Not later than 24 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.
(2) CONTENT- Such reports shall describe--
(A) progress in the development of accurate diagnostic tools that are more
useful in the clinical setting; and
(B) 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
disorders.
(i) Authorization of Appropriations- There is authorized to be appropriated
to carry out this Act, $250,000 for each of fiscal years 2006 and 2007.
Amounts appropriated under this subsection 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 (5 U.S.C. App.), except
that no voting member of the Committee shall be a permanent salaried
employee.
SEC. 4. AUTHORIZATION FOR RESEARCH FUNDING.
There is authorized to be appropriated $10,000,000 for each of fiscal years
2006 through 2010 to provide for research and educational activities
concerning Lyme disease and other tick-borne disorders, and to carry out
efforts to prevent Lyme disease and other tick-borne disorders.
SEC. 5. GOALS.
It is the sense of the Congress that, in carrying out this Act, the
Secretary of Health and Human Services, acting as appropriate in
consultation with the Director of the Centers for Disease Control and
Prevention, the Director of the National Institutes of Health, the
Committee, and other agencies, should consider carrying out the following:
(1) FIVE-YEAR PLAN- It is the sense of the Congress that the Secretary
should consider the establishment of a plan that, for the five fiscal years
following the date of the enactment of this Act, provides for the activities
to be carried out during such fiscal years toward achieving the goals under
paragraphs (2) through (4). The plan should, as appropriate to such goals,
provide for the coordination of programs and activities regarding Lyme
disease and other tick-borne disorders that are conducted or supported by
the Federal Government.
(2) FIRST GOAL: DIAGNOSTIC TEST- The goal described in this paragraph is to
develop a diagnostic test for Lyme disease and other tick-borne disorders
for use in clinical testing.
(3) SECOND GOAL: SURVEILLANCE AND REPORTING OF LYME DISEASE AND OTHER
TICK-BORNE DISORDERS- The goal described in this paragraph is to accurately
determine the prevalence of Lyme disease and other tick-borne disorders in
the United States.
(4) THIRD GOAL: PREVENTION OF LYME DISEASE AND OTHER TICK-BORNE DISORDERS-
The goal described in this paragraph is to develop the capabilities at the
Department of Health and Human Services to design and implement improved
strategies for the prevention and control of Lyme disease and other
tick-borne diseases. Such diseases may include Southern Tick Associated Rash
Illness, ehrlichiosis, babesiosis, and other bacterial, viral, and
rickettsial diseases such as tularemia, tick-borne encephalitis, Rocky
Mountain Spotted Fever, and bartonella, respectively.
SEC. 6. DEFINITIONS.
In this Act:
(1) The term `Committee' means the Tick-Borne Disorders Advisory Committee
established by section 2.
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