I 

111TH CONGRESS 

1ST SESSION H. R. 1179 

To provide for the expansion of Federal efforts concerning the prevention, 

education, treatment, and research activities related to Lyme and other 

tick-borne diseases, including the establishment of a Tick-Borne Diseases 

Advisory Committee. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 25, 2009 

Mr. SMITH of New Jersey (for himself, Mr. WOLF, Mr. STUPAK, and Mr. 

HOLDEN) introduced the following bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To provide for the expansion of Federal efforts concerning 

the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee. 

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 ‘‘Lyme and Tick-Borne 

5 Diseases Prevention, Education, and Research Act of 

6 2009’’. 


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1 SEC. 2. FINDINGS. 

2 The Congress makes the following findings: 

3 (1) Lyme disease is a common but frequently 

4 misunderstood illness that, if not caught early and 

5 treated properly, can cause serious health problems. 

6 (2) Lyme disease is caused by the bacterium 

7 Borrelia burgdorferi, which belongs to the class of 

8 spirochetes, and is transmitted to humans by the 

9 bite of infected black-legged ticks. Early signs of in10 fection may include a rash and flu-like symptoms 

11 such as fever, muscle aches, headaches, and fatigue. 

12 (3) Although Lyme disease can be treated with 

13 antibiotics if caught early, the disease often goes un14 detected because it mimics other illnesses or may be 

15 misdiagnosed. 

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

17 receive treatment, such individual can develop severe 

18 heart, neurological, eye, and joint problems. 

19 (5) Although Lyme disease accounts for 90 per20 cent of all vector-borne infections in the United 

21 States, the ticks that spread Lyme disease also 

22 spread other diseases, such as anaplasmosis, 

23 babesiosis, and tularemia, and carry Bartonella and 

24 other strains of Borrelia. Other tick species, such as 

25 the aggressive lone star, spread ehrlichiosis, Rocky 

26 Mountain spotted fever, and southern tick-associated 


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1 rash illness (STARI). Multiple diseases in 1 patient 

2 make diagnosis and treatment more difficult. 

3 (6) The Centers for Disease Control and Pre4 vention reported 27,444 new cases of Lyme disease 

5 in 2007, a 38 percent increase nationally from 2006. 

6 Studies indicate that the actual number of tick7 borne disease cases is approximately 10 times the 

8 amount reported. 

9 (7) According to the Centers for Disease Con10 trol and Prevention, from 1992 to 2006, the inci11 dence of Lyme disease was highest among children 

12 aged 5 to 14 years of age. 

13 (8) Persistence of symptomatology in many pa14 tients without reliable testing makes treatment of 

15 patients more difficult. 

16 SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVI17 SORY COMMITTEE. 

18 (a) ESTABLISHMENT.—Not later than 180 days after 

19 the date of the enactment of this Act, the Secretary of 

20 Health and Human Services (referred to in this Act as 

21 the ‘‘Secretary’’) shall establish within the Office of the 

22 Secretary an advisory committee to be known as the Tick23 Borne Diseases Advisory Committee (referred to in this 

24 section as the ‘‘Committee’’). 


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1 (b) DUTIES.—The Committee shall advise the Sec2 retary and the Assistant Secretary for Health regarding 

3 the manner in which such officials can— 

4 (1) ensure interagency coordination and com5 munication and minimize overlap regarding efforts 

6 to address tick-borne diseases; 

7 (2) identify opportunities to coordinate efforts 

8 with other Federal agencies and private organiza9 tions addressing such diseases; 

10 (3) ensure interagency coordination and com11 munication with constituency groups; 

12 (4) ensure that a broad spectrum of scientific 

13 viewpoints is represented in public health policy deci14 sions and that information disseminated to the pub15 lic and physicians is balanced; and 

16 (5) advise relevant Federal agencies on prior17 ities related to the Lyme and tick-borne diseases. 

18 (c) MEMBERSHIP.— 

19 (1) APPOINTED MEMBERS.— 

20 (A) IN GENERAL.—The Secretary shall ap21 point the voting members of the Committee 

22 from among individuals who are not officers or 

23 employees of the Federal Government. 

24 (B) GROUPS.—The voting members of the 

25 Committee shall include the following: 


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1 (i) At least 4 members from the sci2 entific community representing the broad 

3 spectrum of viewpoints held within the sci4 entific community related to Lyme and 

5 other tick-borne diseases. 

6 (ii) At least 2 representatives of tick7 borne disease voluntary organizations. 

8 (iii) At least 2 health care providers, 

9 including at least 1 full-time practicing 

10 physician, with relevant experience pro11 viding care for individuals with a broad 

12 range of acute and chronic tick-borne dis13 eases. 

14 (iv) At least 2 patient representatives 

15 who are individuals who have been diag16 nosed with a tick-borne disease or who 

17 have had an immediate family member di18 agnosed with such a disease. 

19 (v) At least 2 representatives of State 

20 and local health departments and national 

21 organizations that represent State and 

22 local health professionals. 

23 (C) DIVERSITY.—In appointing members 

24 under this paragraph, the Secretary shall en25 sure that such members, as a group, represent 


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1 a diversity of scientific perspectives relevant to 

2 the duties of the Committee. 

3 (2) EX OFFICIO MEMBERS.—The Secretary 

4 shall designate, as nonvoting, ex officio members of 

5 the Committee, representatives overseeing tick-borne 

6 disease activities from each of the following Federal 

7 agencies: 

8 (A) The Centers for Disease Control and 

9 Prevention. 

10 (B) The National Institutes of Health. 

11 (C) The Agency for Healthcare Research 

12 and Quality. 

13 (D) The Food and Drug Administration. 

14 (E) The Office of the Assistant Secretary 

15 for Health. 

16 (F) Such additional Federal agencies as 

17 the Secretary determines to be appropriate. 

18 (3) CO-CHAIRPERSONS.—The Secretary shall 

19 designate the Assistant Secretary of Health as the 

20 co-chairperson of the Committee. The appointed 

21 members of the Committee shall also elect a public 

22 co-chairperson. The public co-chairperson shall serve 

23 a 2-year term. 


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1 (4) TERM OF APPOINTMENT.—The term of 

2 service for each member of the Committee appointed 

3 under paragraph (1) shall be 4 years. 

4 (5) VACANCY.—A vacancy in the membership of 

5 the Committee shall be filled in the same manner as 

6 the original appointment. Any member appointed to 

7 fill a vacancy for an unexpired term shall be ap8 pointed for the remainder of that term. Members 

9 may serve after the expiration of their terms until 

10 their successors have taken office. 

11 (d) MEETINGS.—The Committee shall hold public 

12 meetings, except as otherwise determined by the Sec13 retary, after providing notice to the public of such meet14 ings, and shall meet at least twice a year with additional 

15 meetings subject to the call of the co-chairpersons. Agenda 

16 items with respect to such meetings may be added at the 

17 request of the members of the Committee, including the 

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

19 of the proceedings shall be maintained, as required by ap20 plicable law and by regulations of the Secretary. 

21 (e) REPORT.—Not later than 1 year after the date 

22 of the enactment of this Act, and annually thereafter, the 

23 Committee, through the Director of the Centers for Dis24 ease Control and Prevention and the Director of the Na25 tional Institutes of Health, shall submit a report to the 


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1 Secretary. Each such report shall contain, at a min2 imum— 

3 (1) a description of the Committee’s functions; 

4 (2) a list of the Committee’s members and their 

5 affiliations; and 

6 (3) a summary of the Committee’s activities 

7 and recommendations during the previous year, in8 cluding any significant issues regarding the func9 tioning of the Committee. 

10 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

11 purpose of carrying out this section, there is authorized 

12 to be appropriated $250,000 for each of fiscal years 2010 

13 through 2014. Amounts appropriated under the preceding 

14 sentence shall be used for the expenses and per diem costs 

15 incurred by the Committee under this section in accord16 ance with the Federal Advisory Committee Act, except 

17 that no voting member of the Committee shall be a perma18 nent salaried employee. 

19 SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, 

20 SURVEILLANCE, PREVENTION, AND RE21 SEARCH OF LYME AND OTHER TICK-BORNE 

22 DISEASES. 

23 (a) IN GENERAL.—The Secretary, acting as appro24 priate through the Director of the Centers for Disease 

25 Control and Prevention, the Director of the National InstiVerDate Nov 24 2008 07:38 Feb 26, 2009 Jkt 079200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H1179.IH H1179

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1 tutes of Health, the Commissioner of Food and Drugs, 

2 and the Director of the Agency for Healthcare Research 

3 and Quality, as well as additional Federal agencies as the 

4 Secretary determines to be appropriate, and in consulta5 tion with the Tick-Borne Diseases Advisory Committee, 

6 shall provide for— 

7 (1) the conduct or support of activities de8 scribed in paragraphs (1) through (4) of subsection 

9 (b); and 

10 (2) the coordination of all Federal programs 

11 and activities related to Lyme disease and other 

12 tick-borne diseases. 

13 (b) ACTIVITIES.—The activities to be conducted or 

14 supported under subsection (a) include the following: 

15 (1) DEVELOPMENT OF DIAGNOSTIC TESTS.— 

16 (A) The development of sensitive and more 

17 accurate diagnostic tools and tests, including a 

18 direct detection test for Lyme disease capable 

19 of distinguishing active infection from past in20 fection. 

21 (B) Improving the efficient utilization of 

22 diagnostic testing currently available to account 

23 for the multiple clinical manifestations of both 

24 acute and chronic Lyme disease. 


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1 (C) Providing for the timely evaluation of 

2 promising emerging diagnostic methods. 

3 (2) SURVEILLANCE AND REPORTING.— 

4 (A) Accurately determining the prevalence 

5 of Lyme and other tick-borne disease. 

6 (B) Evaluating the feasibility of developing 

7 a reporting system for the collection of data on 

8 physician-diagnosed cases of Lyme disease that 

9 do not meet the surveillance criteria of the Cen10 ters for Disease Control and Prevention in 

11 order to more accurately gauge disease inci12 dence. 

13 (C) Evaluating the feasibility of creating a 

14 national uniform reporting system including re15 quired reporting by laboratories in each State. 

16 (3) PREVENTION.— 

17 (A) The provision and promotion of access 

18 to a comprehensive, up-to-date clearinghouse of 

19 peer-reviewed information on Lyme and other 

20 tick-borne disease. 

21 (B) Increased public education related to 

22 Lyme and other tick-borne diseases through the 

23 expansion of the community-based education 

24 programs of the Centers for Disease Control 


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1 and Prevention to include expansion of informa2 tion access points to the public. 

3 (C) The creation of a physician education 

4 program that includes the full spectrum of sci5 entific research related to Lyme and other tick6 borne diseases. 

7 (D) The sponsoring of scientific con8 ferences on Lyme and other tick-borne diseases, 

9 including reporting and consideration of the full 

10 spectrum of clinically based knowledge, with the 

11 first of such conferences to be held not later 

12 than 24 months after the date of the enactment 

13 of this Act. 

14 (4) CLINICAL OUTCOMES RESEARCH.— 

15 (A) The establishment of epidemiological 

16 research objectives to determine the long-term 

17 course of illness for Lyme disease. 

18 (B) Determination of the effectiveness of 

19 different treatment modalities by establishing 

20 treatment outcome objectives. 

21 (c) AUTHORIZATION OF APPROPRIATIONS.—For the 

22 purposes of carrying out this section and providing for ad23 ditional research, prevention, and educational activities for 

24 Lyme and other tick-borne diseases, there is authorized 

25 to be appropriated $20,000,000 for each of fiscal years 


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1 2010 through 2014. Such authorization of appropriations 

2 is in addition to any other authorization of appropriations 

3 available for such purpose. Of the amounts authorized to 

4 be appropriated under this subsection— 

5 (1) for fiscal year 2010, at least $7,500,000 

6 shall be for activities of the Centers for Disease Con7 trol and Prevention; and 

8 (2) for each of fiscal years 2011 through 2014, 

9 at least $5,000,000 shall be for activities of the Cen10 ters for Disease Control and Prevention. 

11 SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DIS12 EASES. 

13 (a) IN GENERAL.—Not later than 18 months after 

14 the date of the enactment of this Act, and annually there15 after, the Secretary shall submit to the Congress a report 

16 on the activities carried out under this Act. 

17 (b) CONTENT.—Reports under subsection (a) shall 

18 contain— 

19 (1) a description of significant activities or de20 velopments related to the surveillance, diagnosis, 

21 treatment, education, or prevention of Lyme or other 

22 tick-borne diseases, including suggestions for further 

23 research and education; 

24 (2) a scientifically qualified assessment of Lyme 

25 and other tick-borne diseases, including both acute 


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1 and chronic instances, related to the broad spectrum 

2 of empirical evidence of treating physicians, as well 

3 as published peer-reviewed data, that shall include 

4 recommendations for addressing research gaps in di5 agnosis and treatment of Lyme and other tick-borne 

6 diseases and an evaluation of treatment guidelines 

7 and their utilization; 

8 (3) a description of progress in the development 

9 of accurate diagnostic tools that are more useful in 

10 the clinical setting for both acute and chronic dis11 ease; 

12 (4) a description of activities for the promotion 

13 of public awareness and physician education initia14 tives to improve the knowledge of health care pro15 viders and the public regarding clinical and surveil16 lance practices for Lyme disease and other tick17 borne diseases; and 

18 (5) a copy of the most recent annual report 

19 issued by the Tick-Borne Diseases Advisory Com20 mittee established in section 3 and an assessment of 

21 progress in achieving recommendations of that Com22 mittee. 

Æ 


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