II 

111TH CONGRESS 

1ST SESSION S. 1352 

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 SENATE OF THE UNITED STATES 

JUNE 25, 2009 

Mr. DODD (for himself, Ms. COLLINS, Mr. REED, Mr. LIEBERMAN, Mr. 

CARDIN, and Mr. WHITEHOUSE) introduced the following bill; which was 

read twice and referred to the Committee on Health, Education, Labor, 

and Pensions 

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 Disease Prevention, Education, and Research Act of 

6 2009’’. 


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1 SEC. 2. FINDINGS. 

2 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. Untreated, Lyme disease can lead to 

16 severe heart, neurological, eye, and joint problems 

17 because the bacteria can affect many different or18 gans and organ systems. 

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

20 receive treatment, such individual can develop severe 

21 heart, neurological, eye, and joint problems. 

22 (5) Although Lyme disease accounts for 90 per23 cent of all vector-borne infections in the United 

24 States, the ticks that spread Lyme disease also 

25 spread other diseases, such as anaplasmosis, 

26 babesiosis, and tularemia, and carry Bartonella and 


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

2 the aggressive lone star, spread ehrlichiosis, Rocky 

3 Mountain spotted fever, and southern tick-associated 

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

5 make diagnosis and treatment more difficult. 

6 (6) The Centers for Disease Control and Pre7 vention reported 27,444 new cases of Lyme disease 

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

9 Studies indicate that the actual number of tick10 borne disease cases is approximately 10 times the 

11 amount reported. 

12 (7) According to the Centers for Disease Con13 trol and Prevention, from 1992 to 2006, the inci14 dence of Lyme disease was highest among children 

15 aged 5 to 14 years of age. 

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

18 patients more difficult. 

19 SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVI20 SORY COMMITTEE. 

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

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

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

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

25 Secretary an advisory committee to be known as the TickVerDate Nov 24 2008 02:36 Jun 26, 2009 Jkt 079200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1352.IS S1352

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1 Borne Diseases Advisory Committee (referred to in this 

2 section as the ‘‘Committee’’). 

3 (b) DUTIES.—The Committee shall advise the Sec4 retary and the Assistant Secretary for Health regarding 

5 the manner in which such officials can— 

6 (1) ensure interagency coordination and com7 munication and minimize overlap regarding efforts 

8 to address tick-borne diseases; 

9 (2) identify opportunities to coordinate efforts 

10 with other Federal agencies and private organiza11 tions addressing such diseases; 

12 (3) ensure interagency coordination and com13 munication with constituency groups; 

14 (4) ensure that a broad spectrum of scientific 

15 viewpoints are represented in public health policy de16 cisions and that information disseminated to the 

17 public and physicians is balanced; and 

18 (5) advise relevant Federal agencies on prior19 ities related to Lyme and other tick-borne diseases. 

20 (c) MEMBERSHIP.— 

21 (1) APPOINTED MEMBERS.— 

22 (A) IN GENERAL.—From among individ23 uals who are not officers or employees of the 

24 Federal Government, the Secretary shall apVerDate Nov 24 2008 02:36 Jun 26, 2009 Jkt 079200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1352.IS S1352

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1 point to the Committee, as voting members, the 

2 following: 

3 (i) Not less than 4 members from the 

4 scientific community representing the 

5 broad spectrum of viewpoints held within 

6 the scientific community related to Lyme 

7 and other tick-borne diseases. 

8 (ii) Not less than 2 representatives of 

9 tick-borne disease voluntary organizations. 

10 (iii) Not less than 2 health care pro11 viders, including not less than 1 full-time 

12 practicing physician, with relevant experi13 ence providing care for individuals with a 

14 broad range of acute and chronic tick15 borne diseases. 

16 (iv) Not less than 2 patient represent17 atives who are individuals who have been 

18 diagnosed with a tick-borne disease or who 

19 have had an immediate family member di20 agnosed with such a disease. 

21 (v) At least 2 representatives of State 

22 and local health departments and national 

23 organizations that represent State and 

24 local health professionals. 


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1 (B) DIVERSITY.—In appointing members 

2 under this paragraph, the Secretary shall en3 sure that such members, as a group, represent 

4 a diversity of scientific perspectives relevant to 

5 the duties of the Committee. 

6 (2) EX OFFICIO MEMBERS.—The Secretary 

7 shall designate, as nonvoting, ex officio members of 

8 the Committee, representatives overseeing tick-borne 

9 disease activities from each of the following Federal 

10 agencies: 

11 (A) The Centers for Disease Control and 

12 Prevention. 

13 (B) The National Institutes of Health. 

14 (C) The Agency for Healthcare Research 

15 and Quality. 

16 (D) The Food and Drug Administration. 

17 (E) The Office of the Assistant Secretary 

18 for Health. 

19 (F) Such additional Federal agencies as 

20 the Secretary determines to be appropriate. 

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

22 designate the Assistant Secretary of Health as the 

23 co-chairperson of the Committee. The appointed 

24 members of the Committee shall also elect a public 


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

2 a 2-year term. 

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

4 service for each member of the Committee appointed 

5 under paragraph (1) shall be 4 years. 

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

7 the Committee shall be filled in the same manner as 

8 the original appointment. Any member appointed to 

9 fill a vacancy for an unexpired term shall be ap10 pointed for the remainder of that term. Members 

11 may serve after the expiration of their terms until 

12 their successors have taken office. 

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

14 meetings, except as otherwise determined by the Sec15 retary, after providing notice to the public of such meet16 ings, and shall meet at least twice a year with additional 

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

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

19 request of the members of the Committee, including the 

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

21 of the proceedings shall be maintained, as required by ap22 plicable law and by regulations of the Secretary. 

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

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

25 Committee, acting through the members representing the 


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1 Centers for Disease Control and Prevention and the Na2 tional Institutes of Health, shall submit a report to the 

3 Secretary. Each such report shall contain, at a min4 imum— 

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

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

7 affiliations; and 

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

9 and recommendations during the previous year, in10 cluding any significant issues regarding the func11 tioning of the Committee. 

12 (f) AUTHORIZATION OF APPROPRIATIONS.—For the 

13 purpose of carrying out this section, there is authorized 

14 to be appropriated $250,000 for each of the fiscal years 

15 2010 through 2014. Amounts appropriated under the pre16 ceding sentence shall be used for the expenses and per 

17 diem costs incurred by the Committee under this section 

18 in accordance with the Federal Advisory Committee Act 

19 (5 U.S.C. App.), except that no voting member of the 

20 Committee shall be a permanent salaried employee. 


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

2 SURVEILLANCE, PREVENTION, AND RE3 SEARCH OF LYME AND OTHER TICK-BORNE 

4 DISEASES. 

5 (a) IN GENERAL.—The Secretary, acting as appro6 priate through the Director of the Centers for Disease 

7 Control and Prevention, the Director of the National Insti8 tutes of Health, the Commissioner of Food and Drugs, 

9 and the Director of the Agency for Healthcare Research 

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

11 Secretary determines to be appropriate, and in consulta12 tion with the Tick-Borne Diseases Advisory Committee, 

13 shall provide for— 

14 (1) the conduct or support of the activities de15 scribed in subsection (b); and 

16 (2) the coordination of all Federal programs 

17 and activities related to Lyme disease and other 

18 tick-borne diseases. 

19 (b) ACTIVITIES.—The activities described in this sub20 section are the following: 

21 (1) DEVELOPMENT OF DIAGNOSTIC TESTS.— 

22 Such activities include— 

23 (A) the development of sensitive and more 

24 accurate diagnostic tools and tests, including a 

25 direct detection test for Lyme disease capable 


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1 of distinguishing active infection from past in2 fection; 

3 (B) improving the efficient utilization of 

4 diagnostic testing currently available to account 

5 for the multiple clinical manifestations of both 

6 acute and chronic Lyme disease; and 

7 (C) providing for the timely evaluation of 

8 promising emerging diagnostic methods. 

9 (2) SURVEILLANCE AND REPORTING.—Such ac10 tivities include surveillance and reporting of Lyme 

11 and other tick-borne diseases— 

12 (A) to accurately determine the prevalence 

13 of Lyme and other tick-borne diseases; 

14 (B) to evaluate the feasibility of developing 

15 a reporting system for the collection of data on 

16 physician-diagnosed cases of Lyme disease that 

17 do not meet the surveillance criteria of the Cen18 ters for Disease Control and Prevention in 

19 order to more accurately gauge disease inci20 dence; and 

21 (C) to evaluate the feasibility of creating a 

22 national uniform reporting system including re23 quired reporting by laboratories in each State. 

24 (3) PREVENTION.—Such activities include— 


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1 (A) the provision and promotion of access 

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

3 peer-reviewed information on Lyme and other 

4 tick-borne diseases; 

5 (B) increased public education related to 

6 Lyme and other tick-borne diseases through the 

7 expansion of the Community Based Education 

8 Programs of the Centers for Disease Control 

9 and Prevention to include expansion of informa10 tion access points to the public; 

11 (C) the creation of a physician education 

12 program that includes the full spectrum of sci13 entific research related to Lyme and other tick14 borne diseases; and 

15 (D) the sponsoring of scientific conferences 

16 on Lyme and other tick-borne diseases, includ17 ing reporting and consideration of the full spec18 trum of clinically based knowledge, with the 

19 first of such conferences to be held not later 

20 than 24 months after the date of enactment of 

21 this Act. 

22 (4) CLINICAL OUTCOMES RESEARCH.—Such ac23 tivities include— 


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1 (A) the establishment of epidemiological 

2 research objectives to determine the long term 

3 course of illness for Lyme disease; and 

4 (B) determination of the effectiveness of 

5 different treatment modalities by establishing 

6 treatment outcome objectives. 

7 (c) AUTHORIZATION OF APPROPRIATIONS.— 

8 (1) IN GENERAL.—For the purposes of carrying 

9 out this section, and for the purposes of providing 

10 for additional research, prevention, and educational 

11 activities for Lyme and other tick-borne diseases, 

12 there is authorized to be appropriated $20,000,000 

13 for each of the fiscal years 2010 through 2014. 

14 (2) CDC ACTIVITIES.—Of the amounts author15 ized to be appropriated under paragraph (1)— 

16 (A) for fiscal year 2010, not less than 

17 $7,500,000 shall be for activities of the Centers 

18 for Disease Control and Prevention that sup19 port the purposes described in such paragraph; 

20 and 

21 (B) for each of fiscal years 2011 through 

22 2014, not less than $5,000,000 shall be for 

23 such activities of the Centers for Disease Con24 trol and Prevention. 


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1 (3) ADDITIONAL AMOUNTS.—The authorization 

2 of appropriations under this subsection is in addition 

3 to any other authorization of appropriations avail4 able for the purposes described in paragraph (1). 

5 SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DIS6 EASES. 

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

8 the date of enactment of this Act, and annually thereafter, 

9 the Secretary shall submit to Congress a report on the 

10 activities carried out under this Act. 

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

12 contain— 

13 (1) significant activities or developments related 

14 to the surveillance, diagnosis, treatment, education, 

15 or prevention of Lyme or other tick-borne diseases, 

16 including suggestions for further research and edu17 cation; 

18 (2) a scientifically qualified assessment of Lyme 

19 and other tick-borne diseases, including both acute 

20 and chronic instances, related to the broad spectrum 

21 of empirical evidence of treating physicians, as well 

22 as published peer reviewed data, that shall include 

23 recommendations for addressing research gaps in di24 agnosis and treatment of Lyme and other tick-borne 


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1 diseases and an evaluation of treatment guidelines 

2 and their utilization; 

3 (3) progress in the development of accurate di4 agnostic tools that are more useful in the clinical 

5 setting for both acute and chronic disease; 

6 (4) the promotion of public awareness and phy7 sician education initiatives to improve the knowledge 

8 of health care providers and the public regarding 

9 clinical and surveillance practices for Lyme disease 

10 and other tick-borne diseases; and 

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

12 issued by the Tick-Borne Diseases Advisory Com13 mittee established under section 3 and an assess14 ment of progress in achieving the recommendations 

15 included in the Committee’s report. 

Æ 


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