I found karens story researching congenital lyme. I guess Karen is a part of the LDF helped do this along w burrascano, you guys prob saw this SENATE PASSES FIRST LYME DISEASE BILL
SENATE PASSES FIRST LYME DISEASE BILL
Public Given a Formal Voice in Government Tick-borne Activities
A seminal event in the history of the fight against tick-borne diseases
occurred last night when Senate bill S.969, “A bill to establish a
Tick-Borne Disorders Advisory Committee, and for other purposes” became
the first Lyme disease legislation to pass the Senate. This bill gives
the public a formal “place at the table” and input into government Lyme
disease and other tick-borne disorders education and research activities.
The bill, which now moves to the House for passage, establishes the first
Tick-borne Disorders Advisory Committee in the office of the Secretary of
Health and Human Services. The Lyme Disease Foundation (LDF), the premier
national nonprofit dedicated to tick-borne disorders, lead the team of
Community Groups who helped to craft the bill and its various versions as it
moved through the Senate. LDF chairperson Karen Forschner, BS, MBA, CPCU,
CLU, said, “I was overjoyed to learn the bill passed the Senate. >From the
time we established the necessity for this bill, through the crafting of the
legislation with the Lyme Society and others, we knew this was truly an
example of the government responding to public need. While the bill has
undergone the typical streamlining and tinkering that occur to bills as they
move through the Congress, the essential elements of the bill are clearly
intact. And, the name of the bill still remains.”
The bill establishes the first Tick-borne Disease Advisory Committee in the
office of the Department of the Secretary of Health and Human Services.
This committee includes government officials in a nonvoting capacity and public
(nongovernment) members with voting rights. Public members include an equal
number of: patients or family members of patients; representatives of
tick-borne disorder voluntary organizations; scientific community members;
healthcare providers; and representatives of state and local health
departments and national organizations who represent state and local
professionals. The legislation further empowers the “public voice” by
allowing committee members to add agenda items. The bill “Findings” section
clearly reflects the seriousness of tick-borne diseases.
In addition to establishing the Committee, the bill also includes $50
million over five years for government research and educational tick-borne
activities, and suggests priorities for government activities such as
developing improved tick-borne disease tests, surveillance and reporting
activities, and increased an emphasis on prevention.
Lyme disease is a chronic tick-borne disease, the most widely known
Senator Christopher Dodd (D-CT) and Senator Rick Santorum (R-PA) were
instrumental in working with the Lyme community to introduce the bill and
develop the necessary support. Because key House members involved in Lyme
legislation approved of the Senate version, the bill is expected to pass the
This summer the Lyme Disease Community Caucus was formed to include multiple
Lyme groups in order to present a unified voice to Congress and ensure that
voices from Lyme disease “non-endemic” areas were heard. Ms. Forschner said
it was in large part the work of the Lyme Caucus, which includes Lyme groups
from Connecticut, Pennsylvania, Michigan, Illinois, and New Jersey (with
input from other groups across the country) that ensured the legislation
“As a patient and President of an independent Lyme nonprofit, I was pleased
to represent nonendemic states in this process,” said Linda Lobes of the
Michigan Lyme Disease Association “There is so much concentration on the
top ten states that the plight of patients suffering from tick-borne
diseases in the other 40 states is ignored. This bill includes us all.”
In one conference call, Ms. Lobes said she was negotiating with the Senate
staff members on the phone while conducting a garage sale. They waited
patiently while she was talking with the people about
prices for items on
the tables. “The customers never realized I was negotiating with both them
and the United States Senate at the same time,” said Ms. Lobes. “ The
legislative aids were very accommodating and allowed me to complete sales,
before resuming discussions. It was a great example of average citizens
working with elected officials to provide input to protect their
Ms. Mary Halinski, President of the Lyme Society of Pennsylvania said, “The
Tick-Borne Disorder Advisory Committee Bill passing the Senate is a victory
for the entire Lyme disease community that has united behind this
legislation. For the very first time, the public and patients will be at
the table and have input into the direction of the government’s research,
prevention and educational activities regarding tick-borne disorders.”
Renee Thaler, Coordinator, Midwest Lyme Disease Task Force in Illinois,
states “ I am delighted about
the bill’s passage. It is due to the
outstanding work of the LDF and activists working with them that was
critical to the passage.”
“This bill is an excellent opportunity for us to have pubic input into the
government activities that affect us all.” said Monte Skall, Executive
Director, National Capital Lyme Disease Association in Washington, DC.
“With the Senate's unanimous approval of this bipartisan Lyme disease
legislation, Lyme patients and their families are one step closer to the
revamping and strengthening of the federal government's efforts to combat
this terrible disease,” remarked Senator Santorum. “Senator Dodd and I
have a long history of working together on this issue, and we are grateful
for the tremendous efforts of the Lyme advocacy community to raise awareness
and mobilize support for this legislation. We look forward to working with
them and our colleagues in the House of Representatives to ensure swift
passage of this important measure so that we can begin maximizing the public
and private resources dedicated to fighting Lyme."
Senator Dodd who in 1988 became the first member of Congress to introduce
Lyme disease legislation, said the important legislation is only a first
step in the battle against tick-borne diseases.
Does Congressional interest end here? Absolutely not! “I pledge to continue
to work with my colleagues to ensure vigorous and effective oversight of the
legislation’s implementation in order to ensure that our intent if fully
realized,” said Senator Dodd. “It is my hope that the important work of
this, the first federal advisory committee on Lyme disease, will lay out a
concise and workable federal blueprint for combatting this debilitating
• Linda Lobes, Michigan Lyme Disease Association - 888-784-5963
• Mary Halinski, President, Lyme Disease Society - 215-368-2559
• Karen Vanderhoof-Forschner, Lyme Disease Foundation - 860-558-9148
The bill: 107th CONGRESS 969 ES 2d Session
OFFICIAL TITLE(unchanged): A bill to establish a Tick-Borne Disorders
Advisory Committee, and for other purposes.
(Engrossed as Agreed to or Passed by Senate)
AN ACT To establish a Tick-Borne Disorders Advisory Committee, and for
Be it enacted by the Senate and House of Representatives of the United
States of America in Congress assembled,
SECTION 1. 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 sign 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 disorders, such as ehrlichiosis, babesiosis, and other strains
of Borrelia. All of these diseases in 1 patient makes diagnosis and
treatment more difficult.
(6) Although tick-borne disease cases have been reported in 49 States and
the District of Columbia, about
90 percent of the 15,000 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.
(7) Persistence of symptomatology in many patients without reliable testing
makes treatment of patients more difficult.
SEC. 2. 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 (referred to in this
Act as the “Committee”) organized in the Office of the Secretary.
(b) DUTIES – The Committee shall advise and Secretary and Assistant
Secretary of 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 of Health and Human Services 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 of 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 APPOINTMENTS. – 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 of the development of more 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
(i) AUTHORIZATION OF APPROPRIATIONS. – There is authorized to be
appropriated to carry out this Act, $250,000 for each of the fiscal years
2003 and 2004. 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 permanent salaried
SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING.
There are authorized to be appropriated $10,000,000 for each of fiscal years
2003 through 2007 to provide for research and educational activities
regarding Lyme disease and other tick-borne disorders, and to carry out
efforts to prevent Lyme disease and other tick-borne disorders.
SEC. 4 GOALS.
It is the sense of the Senate that, in carrying out this Act, the Secretary
of Health and Human Services (referred to in this section as the
“Secretary”), 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 Senate 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 setting.
(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 of the
Department of Health and Human Services to design and implement improved
strategies for the prevention of tick-borne diseases. Such diseases may
include Masters’ disease, ehrlichiosis, babesiosis, other bacterial, viral
and rickettsial diseases such as tularemia, tick-borne encephalitis, Rocky
Mountain Spotted Fever, and bartonella, respectively.
Passed the Senate October 17, 2002.
Post Edited (veromia333) : 5/25/2009 9:40:27 PM (GMT-6)