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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. FINDINGS. 

4 Congress makes the following findings: 

5 (1) Lyme disease is a common but frequently 

6 misunderstood illness that, if not caught early and 

7 treated properly, can cause serious health problems. 

8 (2) Lyme disease is a bacterial infection that is 

9 transmitted by a tick bite. Early signs of infection 
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1 may include a rash and flu-like symptoms such as 

2 fever, muscle aches, headaches, and fatigue. 

3 (3) Although Lyme disease can be treated with 

4 antibiotics if caught early, the disease often goes un5 detected because it mimics other illnesses or may be 

6 misdiagnosed. Untreated, Lyme disease can lead to 

7 severe heart, neurological, eye, and joint problems 

8 because the bacteria can affect many different or9 gans and organ systems. 

10 (4) If an individual with Lyme disease does not 

11 receive treatment, such individual can develop severe 

12 heart, neurological, eye, and joint problems. 

13 (5) Although Lyme disease accounts for 90 per14 cent of all vector-borne infections in the United 

15 States, the ticks that spread Lyme disease also 

16 spread other disorders, such as ehrlichiosis, 

17 babesiosis, and other strains of Borrelia. All of these 

18 diseases in 1 patient makes diagnosis and treatment 

19 more difficult. 

20 (6) Although tick-borne disease cases have been 

21 reported in 49 States and the District of Columbia, 

22 about 90 percent of the 15,000 cases have been re23 ported in the following 10 States: Connecticut, 

24 Pennsylvania, New York, New Jersey, Rhode Island, 

25 Maryland, Massachusetts, Minnesota, Delaware, and 
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1 Wisconsin. Studies have shown that the actual num2 ber of tick-borne disease cases are approximately 10 

3 times the amount reported due to poor surveillance 

4 of the disease. 

5 (7) Persistence of symptomatology in many pa6 tients without reliable testing makes treatment of 

7 patients more difficult. 

8 SEC. 2. ESTABLISHMENT OF A TICK-BORNE DISORDERS AD9 VISORY COMMITTEE. 

10 (a) ESTABLISHMENT OF COMMITTEE.—Not later 

11 than 180 days after the date of enactment of this Act, 

12 there shall be established an advisory committee to be 

13 known as the Tick-Borne Disorders Advisory Committee 

14 (referred to in this Act as the ‘‘Committee’’) organized 

15 in the Office of the Secretary. 

16 (b) DUTIES.—The Committee shall advise the Sec17 retary and Assistant Secretary of Health regarding how 

18 to—

19 (1) assure interagency coordination and com20 munication and minimize overlap regarding efforts 

21 to address tick-borne disorders; 

22 (2) identify opportunities to coordinate efforts 

23 with other Federal agencies and private organiza24 tions addressing tick-borne disorders; and 
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1 (3) develop informed responses to constituency 

2 groups regarding the Department of Health and 

3 Human Services’ efforts and progress. 

4 (c) MEMBERSHIP.—

5 (1) APPOINTED MEMBERS.—

6 (A) IN GENERAL.—The Secretary of 

7 Health and Human Services shall appoint vot8 ing members to the Committee from among the 

9 following member groups: 

10 (i) Scientific community members. 

11 (ii) Representatives of tick-borne dis12 order voluntary organizations. 

13 (iii) Health care providers. 

14 (iv) Patient representatives who are 

15 individuals who have been diagnosed with 

16 tick-borne illnesses or who have had an im17 mediate family member diagnosed with 

18 such illness. 

19 (v) Representatives of State and local 

20 health departments and national organiza21 tions who represent State and local health 

22 professionals. 

23 (B) REQUIREMENT.—The Secretary shall 

24 ensure that an equal number of individuals are 

25 appointed to the Committee from each of the 
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1 member groups described in clauses (i) through 

2 (v) of subparagraph (A). 

3 (2) EX OFFICIO MEMBERS.—The Committee 

4 shall have nonvoting ex officio members determined 

5 appropriate by the Secretary. 

6 (d) CO-CHAIRPERSONS.—The Assistant Secretary of 

7 Health shall serve as the co-chairperson of the Committee 

8 with a public co-chairperson chosen by the members de9 scribed under subsection (c). The public co-chairperson 

10 shall serve a 2-year term and retain all voting rights. 

11 (e) TERM OF APPOINTMENT.—All members shall be 

12 appointed to serve on the Committee for 4 year terms. 

13 (f) VACANCY.—If there is a vacancy on the Com14 mittee, such position shall be filled in the same manner 

15 as the original appointment. Any member appointed to fill 

16 a vacancy for an unexpired term shall be appointed for 

17 the remainder of that term. Members may serve after the 

18 expiration of their terms until their successors have taken 

19 office. 

20 (g) MEETINGS.—The Committee shall hold public 

21 meetings, except as otherwise determined by the Sec22 retary, giving notice to the public of such, and meet at 

23 least twice a year with additional meetings subject to the 

24 call of the co-chairpersons. Agenda items can be added 

25 at the request of the Committee members, as well as the 
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1 co-chairpersons. Meetings shall be conducted, and records 

2 of the proceedings kept as required by applicable laws and 

3 Departmental regulations. 

4 (h) REPORTS.—

5 (1) IN GENERAL.—Not later than 24 months 

6 after the date of enactment of this Act, and annually 

7 thereafter, the Secretary shall submit to Congress a 

8 report on the activities carried out under this Act. 

9 (2) CONTENT.—Such reports shall describe—

10 (A) progress in the development of accu11 rate diagnostic tools that are more useful in the 

12 clinical setting; and 

13 (B) the promotion of public awareness and 

14 physician education initiatives to improve the 

15 knowledge of health care providers and the pub16 lic regarding clinical and surveillance practices 

17 for Lyme disease and other tick-borne dis18 orders. 

19 (i) AUTHORIZATION OF APPROPRIATIONS.—There is 

20 authorized to be appropriated to carry out this Act, 

21 $250,000 for each of fiscal years 2004 and 2005. 

22 Amounts appropriated under this subsection shall be used 

23 for the expenses and per diem costs incurred by the Com24 mittee under this section in accordance with the Federal 

25 Advisory Committee Act (5 U.S.C. App.), except that no 
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1 voting member of the Committee shall be a permanent sal2 aried employee. 

3 SEC. 3. AUTHORIZATION FOR RESEARCH FUNDING. 

4 There is authorized to be appropriated $10,000,000 

5 for each of fiscal years 2004 through 2008 to provide for 

6 research and educational activities concerning Lyme dis7 ease and other tick-borne disorders, and to carry out ef8 forts to prevent Lyme disease and other tick-borne dis9 orders. 

10 SEC. 4. GOALS. 

11 It is the sense of the Congress that, in carrying out 

12 this Act, the Secretary of Health and Human Services (re13 ferred to in this section as the ‘‘Secretary’’), acting as ap14 propriate in consultation with the Director of the Centers 

15 for Disease Control and Prevention, the Director of the 

16 National Institutes of Health, the Committee, and other 

17 agencies, should consider carrying out the following: 

18 (1) FIVE-YEAR PLAN.—It is the sense of the 

19 Congress that the Secretary should consider the es20 tablishment of a plan that, for the five fiscal years 

21 following the date of the enactment of this Act, pro22 vides for the activities to be carried out during such 

23 fiscal years toward achieving the goals under para24 graphs (2) through (4). The plan should, as appro25 priate to such goals, provide for the coordination of 
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1 programs and activities regarding Lyme disease and 

2 other tick-borne disorders that are conducted or sup3 ported by the Federal Government. 

4 (2) FIRST GOAL: DIAGNOSTIC TEST.—The goal 

5 described in this paragraph is to develop a diag6 nostic test for Lyme disease and other tick-borne 

7 disorders for use in clinical testing. 

8 (3) SECOND GOAL: SURVEILLANCE AND RE9 PORTING OF LYME DISEASE AND OTHER TICK10 BORNE DISORDERS.—The goal described in this 

11 paragraph is to accurately determine the prevalence 

12 of Lyme disease and other tick-borne disorders in 

13 the United States. 

14 (4) THIRD GOAL: PREVENTION OF LYME DIS15 EASE AND OTHER TICK-BORNE DISORDERS.—The 

16 goal described in this paragraph is to develop the ca17 pabilities at the Department of Health and Human 

18 Services to design and implement improved strate19 gies for the prevention and control of Lyme disease 

20 and other tick-borne diseases. Such diseases may in21 clude Masters’ disease, ehrlichiosis, babesiosis, other 

22 bacterial, viral and rickettsial diseases such as tula23 remia, tick-borne encephalitis, Rocky Mountain 

24 Spotted Fever, and bartonella, respectively.

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