Bill Text- S. 1527

[Guest guest]

By Mr. SANTORUM (for himself, Mr. DODD, Mr. CHAFEE, Ms. COLLINS, Mr. KERRY,

Mr. SCHUMER, Mr. REED, and Mr. LIEBERMAN):    

S. 1527. A bill to establish a Tick-Borne Disorders Advisory Committee, and

for other purposes; to the Committee on Health, Education, Labor, and Pensions.

    Be it enacted by the Senate and House of Representatives 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 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 affect many

different

organs 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 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) 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, land, 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) Persistence of symptomatology in many patients without reliable

testing makes treatment of patients more difficult.

   SEC. 2. ESTABLISHMENT OF A 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.

    ( DUTIES.--The Committee shall advise the Secretary and Assistant

Secretary of Health regarding how to--

    (1) assure interagency coordination and communication and minimize

overlap regarding efforts to address tick-borne disorders;

    (2) identify opportunities to coordinate efforts with other Federal

agencies and private organizations addressing tick-borne disorders; and

    (3) develop informed responses to constituency groups regarding the

Department of Health and Human Services' efforts and progress.

    © MEMBERSHIP.--

    (1) APPOINTED MEMBERS.--

    (A) IN GENERAL.--The Secretary of Health and Human Services shall appoint

voting members to the Committee from among the following member groups:

    (i) Scientific community members.

    (ii) Representatives of tick-borne disorder 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 immediate family member diagnosed

with such illness.

    (v) Representatives of State and local health departments and national

organizations who represent State and local health professionals.

    ( 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 described under subsection ©. 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

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 accurate diagnostic tools that are

more useful in the clinical setting; and

    ( the promotion of public awareness and physician education initiatives

to improve the knowledge of health care providers and the public regarding

clinical and surveillance practices for Lyme disease and other tick-borne

disorders.

    (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 Committee 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 salaried employee.

   SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING.

    There are authorized to be appropriated $10,000,000 for each of fiscal

years 2004 through 2008 to provide for research and educational activities

concerning Lyme disease and other tick-borne disorders, and to carry out efforts

to

prevent Lyme disease and other tick-borne disorders.

   SEC. 4. GOALS.

    It is the sense of the Senate that, in carrying out this Act, the

Secretary of Health and Human Services (referred to in this section as the

``Secretary''), acting as appropriate 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 Senate that the Secretary

should consider the establishment of 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

paragraphs (2) through (4). The plan should, as appropriate to such goals,

provide for

the coordination of programs and activities regarding Lyme disease and other

tick-borne disorders that are conducted or supported by the Federal

Government.

    (2) FIRST GOAL: DIAGNOSTIC TEST.--The goal described in this paragraph is

to develop a diagnostic test for Lyme disease and other tick-borne disorders

for use in clinical testing.

    (3) SECOND GOAL: SURVEILLANCE AND REPORTING 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 DISEASE AND OTHER TICK-BORNE DISORDERS

..--The goal described in this paragraph is to develop the capabilities at the

Department of Health and Human Services to design and implement improved

strategies for the prevention and control of Lyme disease and other tick-borne

diseases. Such diseases may include Masters' disease, ehrlichiosis, babesiosis,

other bacterial, viral and rickettsial diseases such as tularemia, tick-borne

encephalitis, Rocky Mountain Spotted Fever, and bartonella, respectively.