I 
108TH CONGRESS 
2D SESSION 
H. R. 4334
To establish a Tick-Borne Disorders Advisory Committee, and for other 
purposes. 
IN THE HOUSE OF REPRESENTATIVES 
MAY 11, 2004
Mrs. KELLY (for herself and Mr. SWEENEY) 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 Representa-
tives 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 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. Untreated, Lyme disease can lead to 
severe heart, neurological, eye, and joint problems 
because the bacteria can affect many different or-
gans 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 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) 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 re-
ported 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 num-
ber 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 pa-
tients without reliable testing makes treatment of 
patients more difficult. 
SEC. 2. ESTABLISHMENT OF A TICK-BORNE DISORDERS AD-
VISORY 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 the Sec-
retary and Assistant Secretary of Health regarding how 
to—
(1) assure interagency coordination and com-
munication and minimize overlap regarding efforts 
to address tick-borne disorders; 
(2) identify opportunities to coordinate efforts 
with other Federal agencies and private organiza-
tions 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 vot-
ing members to the Committee from among the 
following member groups: 
(i) Scientific community members. 
(ii) Representatives of tick-borne dis-
order 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 im-
mediate family member diagnosed with 
such illness. 
(v) Representatives of State and local 
health departments and national organiza-
tions 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 de-
scribed 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 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 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 accu-
rate 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 pub-
lic regarding clinical and surveillance practices 
for Lyme disease and other tick-borne dis-
orders. 
(i) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this Act, 
$250,000 for each of fiscal years 2004 and 2005. 
Amounts appropriated under this subsection shall be used 
for the expenses and per diem costs incurred by the Com-
mittee 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 sal-
aried employee. 
SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING. 
There is authorized to be appropriated $10,000,000 
for each of fiscal years 2004 through 2008 to provide for 
research and educational activities concerning Lyme dis-
ease and other tick-borne disorders, and to carry out ef-
forts to prevent Lyme disease and other tick-borne dis-
orders. 
SEC. 4. GOALS. 
It is the sense of the Congress that, in carrying out 
this Act, the Secretary of Health and Human Services (re-
ferred to in this section as the ‘‘Secretary’’), acting as ap-
propriate 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 es-
tablishment of a plan that, for the five fiscal years 
following the date of the enactment of this Act, pro-
vides for the activities to be carried out during such 
fiscal years toward achieving the goals under para-
graphs (2) through (4). The plan should, as appro-
priate to such goals, provide for the coordination of
programs and activities regarding Lyme disease and 
other tick-borne disorders that are conducted or sup-
ported by the Federal Government. 
(2) FIRST GOAL: DIAGNOSTIC TEST.—The goal 
described in this paragraph is to develop a diag-
nostic test for Lyme disease and other tick-borne 
disorders for use in clinical testing. 
(3) SECOND
GOAL: SURVEILLANCE
AND
RE-
PORTING
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 DIS-
EASE
AND
OTHER
TICK-BORNE
DISORDERS.—The 
goal described in this paragraph is to develop the ca-
pabilities at the Department of Health and Human 
Services to design and implement improved strate-
gies for the prevention and control of Lyme disease 
and other tick-borne diseases. Such diseases may in-
clude Masters’ disease, ehrlichiosis, babesiosis, other 
bacterial, viral and rickettsial diseases such as tula-
remia, tick-borne encephalitis, Rocky Mountain 
Spotted Fever, and bartonella, respectively.
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