I 

109TH CONGRESS 

1ST SESSION H. R. 2526

To establish a Tick-Borne Disorders Advisory Committee, and for other 

purposes. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 23, 2005

Mrs. KELLY (for herself, Mr. HINCHEY, Mr. KILDEE, Mr. MCNULTY, Mr. 

BRADLEY of New Hampshire, Mr. WOLF, Mr. PAYNE, Mr. ENGLISH of 

Pennsylvania, Mr. SWEENEY, Mr. GILCHREST, Mr. HASTINGS of Florida, 

and Mr. FRANK of Massachusetts) 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. SHORT TITLE. 

4 This Act may be cited as the ‘‘Tick-Borne Disorders 

5 Advisory Committee Act of 2005’’. 

6 SEC. 2. FINDINGS. 

7 Congress makes the following findings: 
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1 (1) Lyme disease is a common but frequently 

2 misunderstood illness that, if not caught early and 

3 treated properly, can cause serious health problems. 

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

5 transmitted by a tick bite. Early signs of infection 

6 may include a rash and flu-like symptoms such as 

7 fever, muscle aches, headaches, and fatigue. 

8 (3) Although Lyme disease can be treated with 

9 antibiotics if caught early, the disease often goes un10 detected because it mimics other illnesses or may be 

11 misdiagnosed. Untreated, Lyme disease can lead to 

12 severe heart, neurological, eye, and joint problems 

13 because the bacteria can affect many different or14 gans and organ systems. 

15 (4) Despite 17 years of Federal funding, there 

16 is still no test that can accurately determine infec17 tion and then prove bactericidal cure so that proper 

18 treatment is adequately achieved. Persistence of 

19 symptomatology in many patients without reliable 

20 testing makes treatment of patients more difficult. 

21 (5) If an individual with Lyme disease does not 

22 receive treatment, such individual can develop severe 

23 heart, neurological, eye, and joint problems. 

24 (6) Although Lyme disease accounts for 90 per25 cent of all vector-borne infections in the United 
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1 States, the ticks that spread Lyme disease also 

2 spread other disorders, such as ehrlichiosis, 

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

4 diseases in 1 patient makes diagnosis and treatment 

5 more difficult. 

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

7 reported in 49 States and the District of Columbia, 

8 about 90 percent of the 20,000 cases have been re9 ported in the following 10 States: Connecticut, 

10 Pennsylvania, New York, New Jersey, Rhode Island, 

11 Maryland, Massachusetts, Minnesota, Delaware, and 

12 Wisconsin. Studies have shown that the actual num13 ber of tick-borne disease cases are approximately 10 

14 times the amount reported due to poor surveillance 

15 of the disease. 

16 (8) Persistence of symptomatology in many pa17 tients without reliable testing makes treatment of 

18 patients more difficult. 

19 (9) According to studies, Lyme disease costs 

20 the Nation between $1,000,000,000 to 

21 $2,000,000,000 each year in increased medical 

22 costs, lost productivity, prolonged pain and suf23 fering, and costly delays in diagnosis and inappro24 priate treatment. 
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1 SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISORDERS AD2 VISORY COMMITTEE. 

3 (a) ESTABLISHMENT OF COMMITTEE.—Not later 

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

5 there shall be established an advisory committee to be 

6 known as the Tick-Borne Disorders Advisory Committee 

7 organized in the Office of the Secretary. 

8 (b) DUTIES.—The Committee shall advise the Sec9 retary of Health and Human Services and the Assistant 

10 Secretary for Health regarding how to—

11 (1) assure interagency coordination and com12 munication and minimize overlap regarding efforts 

13 to address tick-borne disorders; 

14 (2) identify opportunities to coordinate efforts 

15 with other Federal agencies and private organiza16 tions addressing tick-borne disorders; and 

17 (3) develop informed responses to constituency 

18 groups regarding the Department of Health and 

19 Human Services’ efforts and progress. 

20 (c) MEMBERSHIP.—

21 (1) APPOINTEDMEMBERS.—

22 (A) IN GENERAL.—The Secretary shall ap23 point voting members to the Committee from 

24 among the following member groups: 

25 (i) Scientific community members. 
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1 (ii) Representatives of tick-borne dis2 order voluntary organizations. 

3 (iii) Health care providers. 

4 (iv) Patient representatives who are 

5 individuals who have been diagnosed with 

6 tick-borne illnesses or who have had an im7 mediate family member diagnosed with 

8 such illness. 

9 (v) Representatives of State and local 

10 health departments and national organiza11 tions who represent State and local health 

12 professionals. 

13 (B) REQUIREMENT.—The Secretary shall 

14 ensure that an equal number of individuals are 

15 appointed to the Committee from each of the 

16 member groups described in clauses (i) through 

17 (v) of subparagraph (A). 

18 (2) EX OFFICIO MEMBERS.—The Committee 

19 shall have nonvoting ex officio members determined 

20 appropriate by the Secretary. 

21 (d) CO-CHAIRPERSONS.—The Assistant Secretary for 

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

23 with a public co-chairperson chosen by the members de24 scribed under subsection (c). The public co-chairperson 

25 shall serve a 2-year term and retain all voting rights. 
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1 (e) TERM OF APPOINTMENT.—All members shall be 

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

3 (f) VACANCY.—If there is a vacancy on the Com4 mittee, such position shall be filled in the same manner 

5 as the original appointment. Any member appointed to fill 

6 a vacancy for an unexpired term shall be appointed for 

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

8 expiration of their terms until their successors have taken 

9 office. 

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

11 meetings, except as otherwise determined by the Sec12 retary, giving notice to the public of such, and meet at 

13 least twice a year with additional meetings subject to the 

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

15 at the request of the Committee members, as well as the 

16 co-chairpersons. Meetings shall be conducted, and records 

17 of the proceedings kept as required by applicable laws and 

18 departmental regulations. 

19 (h) REPORTS.—

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

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

22 thereafter, the Secretary shall submit to Congress a 

23 report on the activities carried out under this Act. 

24 (2) CONTENT.—Such reports shall describe—
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1 (A) progress in the development of accu2 rate diagnostic tools that are more useful in the 

3 clinical setting; and 

4 (B) the promotion of public awareness and 

5 physician education initiatives to improve the 

6 knowledge of health care providers and the pub7 lic regarding clinical and surveillance practices 

8 for Lyme disease and other tick-borne dis9 orders. 

10 (i) AUTHORIZATION OF APPROPRIATIONS.—There is 

11 authorized to be appropriated to carry out this Act, 

12 $250,000 for each of fiscal years 2006 and 2007. 

13 Amounts appropriated under this subsection shall be used 

14 for the expenses and per diem costs incurred by the Com15 mittee under this section in accordance with the Federal 

16 Advisory Committee Act (5 U.S.C. App.), except that no 

17 voting member of the Committee shall be a permanent sal18 aried employee. 

19 SEC. 4. AUTHORIZATION FOR RESEARCH FUNDING. 

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

21 for each of fiscal years 2006 through 2010 to provide for 

22 research and educational activities concerning Lyme dis23 ease and other tick-borne disorders, and to carry out ef24 forts to prevent Lyme disease and other tick-borne dis25 orders. 
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1 SEC. 5. GOALS. 

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

3 this Act, the Secretary of Health and Human Services, 

4 acting as appropriate in consultation with the Director of 

5 the Centers for Disease Control and Prevention, the Direc6 tor of the National Institutes of Health, the Committee, 

7 and other agencies, should consider carrying out the fol8 lowing: 

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

10 Congress that the Secretary should consider the es11 tablishment of a plan that, for the five fiscal years 

12 following the date of the enactment of this Act, pro13 vides for the activities to be carried out during such 

14 fiscal years toward achieving the goals under para15 graphs (2) through (4). The plan should, as appro16 priate to such goals, provide for the coordination of 

17 programs and activities regarding Lyme disease and 

18 other tick-borne disorders that are conducted or sup19 ported by the Federal Government. 

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

21 described in this paragraph is to develop a diag22 nostic test for Lyme disease and other tick-borne 

23 disorders for use in clinical testing. 

24 (3) SECONDGOAL: SURVEILLANCE ANDRE25 PORTING OF LYME DISEASE AND OTHER TICK26 BORNE DISORDERS.—The goal described in this 
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1 paragraph is to accurately determine the prevalence 

2 of Lyme disease and other tick-borne disorders in 

3 the United States. 

4 (4) THIRDGOAL: PREVENTION OF LYME DIS5 EASE ANDOTHER TICK-BORNE DISORDERS.—The 

6 goal described in this paragraph is to develop the ca7 pabilities at the Department of Health and Human 

8 Services to design and implement improved strate9 gies for the prevention and control of Lyme disease 

10 and other tick-borne diseases. Such diseases may in11 clude Southern Tick Associated Rash Illness, 

12 ehrlichiosis, babesiosis, and other bacterial, viral, 

13 and rickettsial diseases such as tularemia, tick-borne 

14 encephalitis, Rocky Mountain Spotted Fever, and 

15 bartonella, respectively. 

16 SEC. 6. DEFINITIONS. 

17 In this Act: 

18 (1) The term ‘‘Committee’’ means the Tick19 Borne Disorders Advisory Committee established by 

20 section 2. 

21 (2) The term ‘‘Secretary’’ means the Secretary 

22 of Health and Human Services.

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