I
107TH CONGRESS
1ST SESSION
H. R. 1254
To establish a program to provide for a reduction in the incidence and
prevalence of Lyme disease.
IN THE HOUSE OF REPRESENTATIVES
MARCH 27, 2001
Mr. SMITH of New Jersey (for himself, Mr. PITTS, Mr. MALONEY of Con-
necticut, Mr. GILMAN, Mrs. MORELLA, Mr. HINCHEY, Mr. DELAHUNT,
Mr. TRAFICANT, Mr. WOLF, Mr. TOWNS, and Mr. SAXTON) introduced
the following bill; which was referred to the Committee on Energy and
Commerce, and in addition to the Committees on Armed Services, Re-
sources, and Agriculture, for a period to be subsequently determined by
the Speaker, in each case for consideration of such provisions as fall with-
in the jurisdiction of the committee concerned
A BILL
To establish a program to provide for a reduction in the
incidence and prevalence of Lyme disease.
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 Disease Initia-
tive of 2001’’.
SEC. 2. FINDINGS.
The Congress finds as follows:
(1) The incidence of Lyme disease in the
United States is increasing rapidly. The Centers for
Disease Control and Prevention (‘‘CDC’’) has deter-
mined that, since 1982, there has been a 25-fold in-
crease in reported cases.
(2) In 1999, a total of 16,273 cases of Lyme
disease were reported to CDC by 50 States and the
District of Columbia (the overall incidence was 4.67
per 100,000), representing a 27 percent increase
from the 12,807 cases reported in 1997.
(3) There is no reliable standardized diagnostic
test for chronic Lyme disease, and the test for acute
Lyme disease should be improved. As a result, the
disease is underreported or misreported by as much
as 10 or 12 fold, according to some studies, because
the symptoms of Lyme disease mimic other health
conditions. Thus, precise figures on the incidence of
Lyme disease are difficult to develop.
(4) Lyme disease costs our Nation between
$1,000,000,000 and $2,000,000,000 in medical
costs annually, according to studies. Lost produc-
tivity annually per person from Lyme disease has
been estimated at 5 to 37 days.
(5) Many health care providers lack the nec-
essary knowledge and expertise—particularly in non-
endemic areas—to accurately diagnose and prevent
Lyme disease. As a result, patients often visit mul-
tiple doctors before obtaining a diagnosis of the dis-
ease, resulting in prolonged pain and suffering, un-
necessary tests, and costly, delayed, or futile treat-
ments.
(6) Due to scientific uncertainties about the di-
agnosis of acute and chronic Lyme disease, and the
proper course and length of treatment, many pa-
tients have encountered difficulties in obtaining
needed insurance coverage for Lyme disease.
(7) Most Lyme disease infections are thought to
result from periresidential exposure to infected ticks
during property maintenance, recreation, and leisure
activities. Thus, individuals who live or work in resi-
dential areas surrounded by woods or overgrown
brush infested by vector ticks are at risk of Lyme
disease. In addition, persons who participate in rec-
reational activities away from home (such as hiking,
camping, fishing and hunting in tick habitat) and
persons who engage in outdoor occupations (such as
landscaping, brush clearing, forestry, military serv-
ice, and wildlife and parks management in endemic
areas) may also be at risk of Lyme disease. Some
estimates indicate outdoor workers have a four-to-six
fold elevation in risk of Lyme disease.
SEC. 3. PUBLIC HEALTH GOALS; FIVE-YEAR PLAN.
(a) IN GENERAL.—The Secretary of Health and
Human Services (acting as appropriate through the Direc-
tor of the Centers for Disease Control and Prevention, the
Director of the National Institutes of Health, and the
Commissioner of Food and Drugs), the Secretary of Agri-
culture, the Secretary of the Interior, and the Secretary
of Defense (in this Act referred to collectively as the ‘‘Sec-
retaries’’) shall collaborate to carry out the following:
(1) The Secretaries shall establish the goals de-
scribed in subsections (c) through (g) relating to ac-
tivities to provide for a reduction in the incidence
and prevalence of Lyme disease and related tick-
borne infectious diseases.
(2) The Secretaries shall carry out activities to-
ward achieving the goals, which may include activi-
ties carried out directly by the Secretaries and ac-
tivities carried out through awards of grants or con-
tracts to public or nonprofit private entities.
(3) In carrying out paragraph (2), the Secre-
taries shall give priority—
(A) first, to achieving the goal under sub-
section (c);
(B) second, to achieving the goal under
subsection (d);
(C) third, to achieving the goal under sub-
section (e);
(D) fourth, to achieving the goal under
subsection (f); and
(E) fifth, to achieving the goal under sub-
section (g).
(b) FIVE-YEAR PLAN.—In carrying out subsection
(a), the Secretaries shall establish 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 sub-
sections (c) through (g). The plan shall, as appropriate
to such goals, provide for the coordination of programs
and activities regarding Lyme disease that are conducted
or supported by the Federal Government.
(c) FIRST GOAL: DETECTION TEST.—For purposes
of subsection (a), the goal described in this subsection is
the development of novel and more sensitive, specific, and
reproducible diagnostic tests and procedures (or the im-
provement or refinement of existing tests) that—
(1) can accurately determine whether an indi-
vidual has acute or chronic Lyme disease;
(2) can accurately determine the activity of
acute or chronic Lyme disease infection or both;
(3) can accurately distinguish acute or chronic
Lyme disease or both from other related, tick-borne,
coinfectious diseases; and
(4) can accurately measure the responsiveness
of acute or chronic Lyme disease infection or both
to treatment.
(d) SECOND GOAL: IMPROVED SURVEILLANCE AND
REPORTING SYSTEM.—
(1) IN GENERAL.—For purposes of subsection
(a), the goal described in this subsection is to assess
the medical, social, and economic burden of Lyme
disease in the United States. This assessment shall
include a review of the system in the United States
for surveillance and reporting with respect to Lyme
disease and a determination of whether and in what
manner the system can be improved.
(2) CERTAIN ACTIVITIES.—In carrying out ac-
tivities toward the goal described in paragraph (1),
the Secretaries shall—
(A) consult with the States, the Conference
of State and Territorial Epidemiologists, units
of local government, physicians and health pro-
viders, patients with Lyme disease, and organi-
zations representing such patients;
(B) consider whether uniform formats
should be developed for the reporting by physi-
cians and laboratories of cases of Lyme disease
to public health officials; and
(C) with respect to health conditions that
are reported by physicians as cases of Lyme
disease but do not meet the surveillance criteria
established by the Director of the Centers for
Disease Control and Prevention to be counted
as such cases, consider whether data on such
health conditions should be maintained and
analyzed to assist in understanding the cir-
cumstances in which Lyme disease is being di-
agnosed and the manner in which it is being
treated.
(e) THIRD GOAL: LYME DISEASE PREVENTION; DE-
VELOPMENT OF INDICATORS.—For purposes of subsection
(a), the goal described in this subsection is to reduce,
through the use of effective public health education, pre-
vention, and tick population reduction techniques, the inci-
dence of Lyme disease in the 10 highest endemic States
by 33 percent by the date that is five years after the date
of the enactment of this Act. In carrying out activities to-
ward such goal, the Secretaries shall carry out each of
the following:
(1) Establish a baseline incidence rate of Lyme
disease in the 10 highest endemic States. The estab-
lishment of this baseline must take into consider-
ation the surveillance criteria review specified in sub-
section (d).
(2) Encourage the use of natural and nonpes-
ticidal methods to control and reduce tick popu-
lations, where appropriate.
(3) Reduce the risks of Lyme disease at all fed-
erally owned lands located in endemic States and re-
gions, as well as at locations known or suspected to
pose a risk of Lyme disease to patrons and employ-
ees, through the following:
(A) The development of standardized, peri-
odic (not less than one per year) Lyme disease
risk assessments that test and then categorize
the overall level of risk of Lyme disease at fed-
erally owned lands in endemic States and re-
gions. The Lyme disease risk assessments shall
be made available to the public in appropriate
forms, and may include such factors as—
(i) whether any human cases of Lyme
disease have been diagnosed and treated
on, or in areas adjacent to, the federally
owned lands;
(ii) whether vectors capable of trans-
mitting Lyme disease to humans are
known to inhabit the federally owned land;
(iii) whether any such vectors present
on the federally owned land are known to
actually be infected with Lyme disease;
and
(iv) the geographic distribution of
Lyme disease risk within the federally
owned land;
(B) The development and coordination of
public awareness programs to educate patrons,
employees, and health professionals at federally
owned lands about: the risks of Lyme disease,
all appropriate prevention methods that can be
used to reduce these risks, and information
about the symptoms and nature of the disease.
(C) The use of appropriate habitat man-
agement and integrated pest-control techniques
in accordance with this section an advisory committee to
be known as the Lyme Disease Taskforce (in this section
referred to as the ‘‘Task Force’’).
(b) DUTIES.—The Task Force shall provide advice
to the Secretaries with respect to achieving the goals
under section 3, including advice on the plan under sub-
section (b) of such section. Nothing in this section may
be construed as interfering with or undermining the peer
review process for research programs and grants, and the
Task Force shall take care that its activities complement
existing interagency relationships and interdepartmental
working groups to the maximum extent practicable.
(c) MEMBERSHIP.—
(1) EX OFFICIO MEMBERS.—The following offi-
cials (or their designees) shall serve as ex officio
members of the Task Force:
(A) The Director of the National Institute
of Allergy and Infectious Diseases.
(B) The Director of the National Institute
of Arthritis and Musculoskeletal and Skin Dis-
eases.
(C) The Director of the National Institute
of Neurological Disorders and Stroke.
(D) The Director of the National Center
for Infectious Diseases.
(E) The Director of the Epidemiology Pro-
gram Office.
(F) The Director of the Public Health
Practice Program Office.
(G) The Commander of the United States
Army Medical Command.
(H) The Commander of the United States
Army Center for Health Promotion and Pre-
ventative Medicine.
(I) The Director of the Center for Bio-
logics Evaluation and Research.
(J) The Administrator of the Agricultural
Research Service.
(K) The Director of the National Park
Service.
(L) The Director of the Fish and Wildlife
Service.
(M) The Director of the Indian Health
Service.
(N) The Chief Biologist of the Biological
Resources Division, United States Geological
Survey.
(2) APPOINTED
MEMBERS.—Appointments to
the Task Force shall be made in accordance with the
following:
(A) Two members shall be research sci-
entists with demonstrated achievements in re-
search related to Lyme disease and related tick-
borne diseases. The scientists shall be appointed
by the Secretary of Health and Human Services
(in this paragraph referred to as the ‘‘Sec-
retary’’) in consultation with the National
Academy of Sciences.
(B) Four members shall be representatives
of organizations whose primary emphasis is on
research and public education into Lyme dis-
ease and related tick-borne diseases. One rep-
resentative from each of such organizations
shall be appointed by the Secretary in consulta-
tion with the National Academy of Sciences.
(C) Two members shall be clinicians with
extensive experience in the treatment of individ-
uals with chronic Lyme disease and related
tick-borne diseases. The clinicians shall be ap-
pointed by the Secretary in consultation with
the Institute of Medicine and the National
Academy of Sciences.
(D) Two members shall be individuals who
are the parents, spouse, or legal guardians of a
person or persons that have contracted Lyme
disease or a related tick-borne disease. The in-
dividuals shall be appointed by the Secretary in
consultation with the ex officio members under
paragraph (1) and the four organizations re-
ferred to in subparagraph (B).
(E) One member shall be a representative
of the Council of State and Territorial Epi-
demiologists.
(F) One member shall be a representative
of the National Association of County and City
Health Officials.
(G) One member shall be an epidemiologist
of demonstrated achievements in the field of ep-
idemiology. The epidemiologist shall be ap-
pointed by the Secretary in consultation with
the National Academy of Sciences.
(d) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE;
OTHER PROVISIONS.—The following apply with respect to
the Task Force:
(1) The Task Force shall receive necessary and
appropriate administrative support from the Depart-
ment of Health and Human Services.
(2) Members of the Task Force shall be ap-
pointed for the duration of the Task Force.
(3) From among the members appointed under
subsection (c)(2), the Task Force shall designate an
individual to serve as the chair of the Task Force.
(4) The Task Force shall meet no less than two
times per year.
(5) Members of the Task Force shall not re-
ceive additional compensation for their service. Such
members may receive reimbursement for appropriate
and additional expenses that are incurred through
service on the Task Force which would not have in-
curred had they not been a member of the Task
Force.
(6) Any vacancy in the membership of the Task
Force shall be filled in the manner in which the
original appointment was made and does not affect
the power of the remaining members to carry out
the duties of the Task Force.
SEC. 5. ANNUAL REPORTS.
The Secretaries shall submit to the Congress periodic
reports on the activities carried out under this Act and
the extent of progress being made toward the goals estab-
lished under section 3. The first such report shall be sub-
mitted not later than 18 months after the date of the en-
actment of this Act, and subsequent reports shall be sub-
mitted annually thereafter until the goals are met.
SEC. 6. AUTHORIZATION OF APPROPRIATIONS.
(a) NATIONAL INSTITUTES OF HEALTH.—In addi-
tion to other authorizations of appropriations that are
available for carrying out the purposes described in this
Act and that are established for the National Institutes
of Health, there are authorized to be appropriated to the
Director of such Institutes for such purposes $8,000,000
for each of the fiscal years 2002 through 2006.
(b) CENTERS FOR DISEASE CONTROL AND PREVEN-
TION.—In addition to other authorizations of appropria-
tions that are available for carrying out the purposes de-
scribed in this Act and that are established for the Centers
for Disease Control and Prevention, there are authorized
to be appropriated to the Director of such Centers for such
purposes $8,000,000 for each of the fiscal years 2002
through 2006.
(c) DEPARTMENT
OF DEFENSE.—In addition to
other authorizations of appropriations that are available
for carrying out the purposes described in this Act and
that are established for the Department of Defense, there
are authorized to be appropriated to the Secretary of De-
fense for such purposes $6,000,000 for each of the fiscal
years 2002 through 2006.
(d) DEPARTMENT OF AGRICULTURE.—In addition to
other authorizations of appropriations that are available
for carrying out the purposes described in this Act and
that are established for the Department of Agriculture,
there are authorized to be appropriated to the Secretary
of Agriculture for such purposes $1,500,000 for each of
the fiscal years 2002 through 2006.
(e) DEPARTMENT
OF INTERIOR.—In addition to
other authorizations of appropriations that are available
for carrying out the purposes described in this Act and
that are established for the Department of the Interior,
there are authorized to be appropriated to the Secretary
of the Interior for such purposes $1,500,000 million for
each of the fiscal years 2002 through 2006.
Æ