S. 969 - Lyme and Infectious Disease Information and Fairness in Treatment (LIFT) Act
Art Doherty
Act (Introduced in the Senate)
S 969 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.
Lyme and Infectious Disease Information and Fairness in Treatment (LIFT)
Act (Introduced in the Senate)
http://rs9.loc.gov/cgi-bin/query/D?c107:2:./temp/~c107OKojFF::
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Brite
Art Doherty <doh...@utech.net> wrote in message news:3B17BE14...@utech.net...
Art Doherty
Here's the link again - there are two colons at the end which, to be
read by some browsers, including Netscape, must be converted to hex
codes, i.e., the : must be converted to %3A
S. 969 - Lyme and Infectious Disease Information and Fairness in
Treatment (LIFT) Act (Introduced in the Senate)
http://rs9.loc.gov/cgi-bin/query/D?c107:2:./temp/~c107OKojFF%3A%3A
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Art Doherty
Here's a better link:
S. 969 - Lyme and Infectious Disease Information and Fairness in
Treatment (LIFT) Act (Introduced in the Senate)
http://thomas.loc.gov/cgi-bin/query/z?c107:s.969:%3A
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