Authorizes appropriations for FY 2003 and 2004 to fund the Committee in accordance with the Federal Advisory Committee Act.
(Sec. 3) Authorizes appropriations for FY 2003 through 2007 for: (1) research and educational activities concerning Lyme disease and other tick-borne disorders; and (2) efforts to prevent such illnesses.
Expresses the sense of the Senate that to achieve the goals of this Act, the Secretary, acting with appropriate consultation, should consider carrying out a five-year plan providing for the coordination of programs and activities.
(Sec. 4) States as goals: (1) the development of a diagnostic test for Lyme disease and other tick-borne disorders for use in clinical testing; (2) the determination of the prevalence of such diseases in the United States; and (3) the development of the capability at HHS to design and implement improved strategies for the prevention and control of such diseases.
[Congressional Bills 107th Congress]
[From the U.S. Government Publishing Office]
[S. 969 Introduced in Senate (IS)]
107th CONGRESS
1st Session
S. 969
To establish a Tick-Borne Disorders Advisory Committee, and for other
purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
May 25, 2001
Mr. Dodd (for himself and Mr. Santorum) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
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 ``Lyme and Infectious Disease
Information and Fairness in Treatment (LIFT) 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 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 invade any system of the
body.
(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) According to the Centers for Disease Control 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: 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) 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 suffering,
unnecessary testing, and costly delays in diagnosis and
inappropriate treatment.
(8) Patients with Lyme disease are increasingly having
difficulty obtaining diagnosis and treatment for the disease,
and being restored to health. Because of differences in medical
and scientific opinion, clinicians fear retaliation from
insurance companies and medical licensure boards based on their
diagnosis and treatment of patients.
(9) A number of patients have difficulties in obtaining
insurance coverage for treatment of Lyme disease.
(10) Despite 14 years of Federal funding, there is still no
test that can accurately determine infection 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 Office, over the
past 10 years, the Centers for Disease Control and Prevention
has only increased its allocation for tick-borne research and
education by 7 percent, 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 Office, 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
symptoms 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 direction 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 regarding tick-
borne disorder issues between agencies of the Department of
Health and Human Services, the biomedical community, and
voluntary organizations 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.
(b) Duties.--The Committee shall advise the Secretary and Assistant
Secretary of Health and Human Services and the Social Security
Administration Commissioner 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 communication 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 Department of Health and Human Services and
Social Security Administration's efforts and progress.
(c) Membership.--
(1) In general.--The Secretary of Health and Human Services
shall appoint 11 voting members to the Committee of which--
(A) 3 shall be scientific community members,
including a researcher or public health official, with
demonstrated achievement in tick-borne education,
research, or advocacy, and extensive 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 suffering from or
providing medical care to patients with tick-borne
disorders;
(C) 3 shall be clinicians with extensive experience
in the diagnoses and treatment of tick-borne diseases
and with long-term experience, independent of an
individual practice or research, 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 immediate family member
diagnosed with such illness.
(2) Ex-officio representatives.--The Committee 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 patient, public, and
health care provider communities;
(D) 1 shall be from the Health Resources and
Services Administration;
(E) 1 shall be from the Social Security
Administration, preferably from the Office of the
Deputy Commissioner, Disability and Income Security or
Office of the Deputy Commissioner, Policy;
(F) 1 shall be from the Department of Defense,
United States Army Center for Health Promotion and
Preventive Medicine;
(G) 1 shall be from the Health Care Financing
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 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 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 Chairperson. Agenda items can be added at the
request of the Committee members, as well as the Chairperson. 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 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 expansion and improvement of the Lyme
disease surveillance case definition;
(C) the promotion of public awareness and physician
education initiatives to improve the knowledge of
health care providers and the public regarding the best
and most effective methods to prevent, diagnose and
treat tick-borne disorders;
(D) the improved access to disability benefits
policies for people living with tick-borne disorders;
and
(E) recommendations for resolving differences in
medical and scientific opinion that have resulted in
the exceptional number of reviews 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 PREVENTION.
There is authorized to be appropriated for the Centers for Disease
Control and Prevention, $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, expanding educational efforts regarding
other tick-borne disorders beyond Lyme disease, and re-educating
clinicians, medical licensure boards, and health care insurers about
the inappropriate uses of the Lyme disease case surveillance definition
in the diagnosis and treatment of patients.
SEC. 6. DEPARTMENT OF DEFENSE.
There are authorized to be appropriated for the United States Army
Center for Health Promotion and Preventive Medicine, $7,000,000 for
each of the fiscal years 2002 and 2003 to increase risk assessment
evaluations of United States military bases in the United States for
all tick-borne disorders, to continue the study of preventive methods
to decrease troop exposure to tick-borne disorders and to promote
collaboration in promising areas of research with the Centers for
Disease Control and Prevention and the National Institutes of Health.
SEC. 7. THE NATIONAL INSTITUTES OF HEALTH.
The Director of the National Institutes of Health, in working with
the Tick-Borne Disorders Advisory Committee 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.
<all>
Introduced in Senate
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Senate Committee on Health, Education, Labor, and Pensions discharged by Unanimous Consent.
Senate Committee on Health, Education, Labor, and Pensions discharged by Unanimous Consent.
Measure laid before Senate by unanimous consent. (consideration: CR S10767-10769)
Passed/agreed to in Senate: Passed Senate with an amendment by Unanimous Consent.
Passed Senate with an amendment by Unanimous Consent.
Message on Senate action sent to the House.
Received in the House.
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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