I
107TH CONGRESS
1ST SESSION
H. R. 2118
To establish a Tick-Borne Disorders Advisory Committee, and for other
purposes.
IN THE HOUSE OF REPRESENTATIVES
JUNE 8, 2001
Mr. GREENWOOD (for himself, Mrs. LOWEY, Mr. SIMMONS, Mr. BALDACCI,
Mr. MALONEY of Connecticut, Mr. KIRK, and Mr. LARSON of Con-
necticut) introduced the following bill; which was referred to the Com-
mittee 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 Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Lyme and Infectious
Disease Information and Fairness in Treatment (LIIFT)
Act’’.
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 un-
detected because it mimics other illnesses or may be
misdiagnosed.
(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 per-
cent 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) According to the Centers for Disease Con-
trol and Prevention, cases of this tick-borne disease
have increased 25-fold since national surveillance of
it began in 1982. 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: Con-
necticut, 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) According to studies, Lyme disease costs
our 
Nation 
between 
$1,000,000,000 
to
$2,000,000,000 each year in increased medical
costs, lost productivity, prolonged pain and suf-
fering, unnecessary testing, and costly delays in di-
agnosis and inappropriate treatment.
(8) Patients with Lyme disease are increasingly
having difficulty obtaining diagnosis and treatment
for the disease, and being restored to health. Be-
cause of differences in medical and scientific opinion,
clinicians fear retaliation from insurance companies
and medical licensure boards based on their diag-
nosis and treatment of patients.
(9) A number of patients have difficulties in ob-
taining insurance coverage for treatment of Lyme
disease.
(10) Despite 14 years of Federal funding, there
is still no test that can accurately determine infec-
tion so that proper treatment is adequately achieved.
Persistence of symptomatology in many patients
without reliable testing makes treatment of patients
more difficult.
(11) According to the General Accounting Of-
fice, over the past 10 years, the Centers for Disease
Control and Prevention has only increased its alloca-
tion for tick-borne research and education by 7 per-
cent, from $6,900,000 to $7,400,000. Over that
same period, the Centers for Disease Control and
Prevention’s expenditures for infectious diseases rose
318 percent, from $70,800,000 to $296,000,000.
(12) According to the General Accounting Of-
fice, over the past 10 years, the National Institutes
of Health have increased expenditures almost every
year, from $13,100,000 in fiscal year 1991 to
$26,000,000 in fiscal year 2000.
(13) The Lyme disease vaccine gained approval
from the Food and Drug Administration in 1998.
Since that time, the Food and Drug Administration
has received over 1,000 adverse event reports on the
vaccine, including reports of severe arthritic symp-
toms and even Lyme disease.
SEC. 3. PURPOSE.
The purpose of this Act is to establish a Tick-Borne
Disorders Advisory Committee that will—
(1) provide a public voice regarding the direc-
tion and activities of the governmental agencies that
deal with Lyme disease in order to create a better
understanding and response by the government to
the public need regarding the disease;
(2) assure communication and coordination re-
garding tick-borne disorder issues between agencies
of the Department of Health and Human Services,
the biomedical community, and voluntary organiza-
tions concerned; and
(3) promote coordination of activities with the
Social Security Administration and Department of
Defense.
SEC. 4. 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 of Health and Human Serv-
ices.
(b) DUTIES.—The Committee shall advise the Sec-
retary of Health and Human Services (in this Act referred
to as the ‘‘Secretary’’) regarding how to—
(1) provide public input on the public’s needs
regarding tick-borne disorders, so that government
agencies can more effectively plan and execute their
activities, thus improving the response to public
need;
(2) assure interagency coordination and com-
munication and minimize overlap regarding tick-
borne disorder issues;
(3) identify opportunities to coordinate efforts
with other Federal agencies and tick-borne disorder
national nonprofits; and
(4) develop informed responses to constituency
groups regarding the efforts and progress of the De-
partment of Health and Human Services.
(c) MEMBERSHIP.—
(1) IN GENERAL.—The Secretary shall appoint
11 voting members to the Committee of which—
(A) 3 shall be scientific community mem-
bers, including a researcher or public health of-
ficial, with demonstrated achievement in tick-
borne education, research, or advocacy, and ex-
tensive experience in working with a diverse
range of patients, patient groups, and tick-
borne non-profits;
(B) 3 shall be representatives of national
tick-borne disorder voluntary organizations that
advocate for the public, as well as those suf-
fering from or providing medical care to pa-
tients with tick-borne disorders;
(C) 3 shall be clinicians with extensive ex-
perience in the diagnoses and treatment of tick-
borne diseases and with long-term experience,
independent of an individual practice or re-
search, in working with patients, patient
groups, and tick-borne non-profits; and
(D) 2 shall be patient representatives who
are individuals who have been diagnosed with
tick-borne illnesses or who have had an imme-
diate family member diagnosed with such ill-
ness.
(2) EX-OFFICIO REPRESENTATIVES.—The Com-
mittee shall have nonvoting ex-officio members of
which—
(A) 2 shall be from the Centers for Disease
Control and Prevention, 1 of which shall be
from the Viral and Rickettsial Diseases Division
of the Viral and Rickettsial Zoonoses Branch;
(B) 1 shall be from the Food and Drug
Administration, Office of Special Health Issues,
in the Office of the Commissioner;
(C) 3 shall be from the National Institutes
of Health—
(i) 1 of which shall be from the Rocky
Mountain 
Laboratories 
Microscopy
Branch; and
(ii) 1 of which shall be a pathologist
with the National Institutes of Health who
has extensive experience in Lyme disease
research and a demonstrated ability to
work well with diverse groups in the pa-
tient, public, and health care provider com-
munities;
(D) 1 shall be from the Health Resources
and Services Administration;
(E) 1 shall be from the Social Security Ad-
ministration;
(F) 1 shall be from the Department of De-
fense, United States Army Center for Health
Promotion and Preventive Medicine;
(G) 1 shall be from the Health Care Fi-
nancing Administration; and
(H) any additional members shall be added
from other Departments if necessary to aid the
Committee in its overall goals.
(d) CHAIRPERSON.—The Assistant Secretary for
Health (Department of Health and Human Services) shall
serve as the co-chairperson of the Committee with a public
co-chairperson chosen by the members described under
subsection (c)(1). 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 Com-
mittee, 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 Sec-
retary, giving notice to the public of such, and meet at
least twice a year with additional meetings subject to the
call of the Chairperson. Agenda items can be added at the
request of the Committee members, as well as the Chair-
person. Meetings shall be conducted, and records of the
proceedings kept as required by applicable laws and De-
partmental regulations.
(h) REPORTS.—
(1) 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.
(2) CONTENT.—Such reports shall describe—
(A) progress in the development of more
accurate diagnostic tools and tests;
(B) the development of the other seven
categories of case definitions;
(C) the promotion of public awareness and
physician education initiatives to improve the
knowledge of health care providers and the pub-
lic regarding the best and most effective meth-
ods to prevent, diagnose and treat tick-borne
disorders;
(D) the improved access to disability bene-
fits policies for people living with tick-borne dis-
orders; and
(E) recommendations for resolving dif-
ferences in medical and scientific opinion that
have resulted in the exceptional number of re-
views of Lyme disease clinicians by insurance
companies and State medical licensure boards.
(i) AUTHORIZATION OF APPROPRIATIONS.—There is
authorized to be appropriated to carry out this Act,
$250,000 for each of the fiscal years 2002 and 2003.
SEC. 5. CENTERS FOR DISEASE CONTROL AND PREVEN-
TION.
There are authorized to be appropriated for the Cen-
ters for Disease Control and Prevention—
(1) $14,500,000 for each of the fiscal years
2002 and 2003 to enable such Centers to focus on
developing better diagnostic tools and tests, expand-
ing educational efforts regarding other tick-borne
disorders beyond Lyme disease, and re-educating cli-
nicians, medical licensure boards, and health care in-
surers about the inappropriate uses of the Lyme dis-
ease case surveillance definition in the diagnosis and
treatment of patients; and
(2) $7,000,000 for each of the fiscal years 2002
and 2003 to collaborate with the National Institutes
of Health, the Department of Defense, and other ap-
propriate agencies for further research on tick-borne
disorders, including the study of preventive methods
to decrease exposure to such disorders.
SEC. 6. NATIONAL INSTITUTES OF HEALTH.
The Director of the National Institutes of Health, in
working with the Tick-Borne Disorders Advisory Com-
mittee established under this Act, and recognizing that
tick-borne disorders affect multiple systems of the body,
shall coordinate activities and research regarding tick-
borne diseases across Institutes to encourage collaborative
research.
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