I 

114TH CONGRESS 

1ST SESSION H. R. 789 

To provide for research with respect to Lyme disease and other tick-borne 

diseases, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 5, 2015 

Mr. GIBSON (for himself, Mr. SEAN PATRICK MALONEY of New York, Mr. 

WITTMAN, Mr. SMITH of New Jersey, Mr. ZELDIN, Mr. KATKO, Mr. 

COURTNEY, Mr. WELCH, Mr. BARLETTA, and Ms. STEFANIK) introduced 

the following bill; which was referred to the Committee on Energy and 

Commerce 

A BILL 

To provide for research with respect to Lyme disease and 

other tick-borne diseases, 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 Disease 

5 Research Accountability and Transparency Act of 2015’’. 

6 SEC. 2. LYME DISEASE AND OTHER TICK-BORNE DISEASES. 

7 Title III of the Public Health Service Act (42 U.S.C. 

8 241 et seq.) is amended by adding at the end the following 

9 new part: 


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1 ‘‘PART W—LYME DISEASE AND OTHER TICK2 BORNE DISEASES 

3 ‘‘SEC. 399OO. RESEARCH. 

4 ‘‘(a) IN GENERAL.—The Secretary shall conduct or 

5 support epidemiological, basic, translational, and clinical 

6 research regarding Lyme disease and other tick-borne dis7 eases. 

8 ‘‘(b) BIENNIAL REPORTS.—The Secretary shall en9 sure that each biennial report under section 403 includes 

10 information on actions undertaken by the National Insti11 tutes of Health to carry out subsection (a) with respect 

12 to Lyme disease and other tick-borne diseases, including 

13 an assessment of the progress made in improving the out14 comes of Lyme disease and such other tick-borne diseases. 

15 ‘‘SEC. 399OO–1. WORKING GROUP. 

16 ‘‘(a) ESTABLISHMENT.—The Secretary shall estab17 lish a permanent working group, to be known as the Inter18 agency Lyme and Tick-Borne Disease Working Group (in 

19 this section and section 399OO–2 referred to as the 

20 ‘Working Group’), to review all efforts within the Depart21 ment of Health and Human Services concerning Lyme dis22 ease and other tick-borne diseases to ensure interagency 

23 coordination, minimize overlap, and examine research pri24 orities. 

25 ‘‘(b) RESPONSIBILITIES.—The Working Group 

26 shall— 


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1 ‘‘(1) not later than 24 months after the date of 

2 enactment of this part, and every 24 months there3 after, develop or update a summary of— 

4 ‘‘(A) ongoing Lyme disease and other tick5 borne disease research related to causes, pre6 vention, treatment, surveillance, diagnosis, 

7 diagnostics, duration of illness, intervention, 

8 and access to services and supports for individ9 uals with Lyme disease or other tick-borne dis10 eases; 

11 ‘‘(B) advances made pursuant to such re12 search; 

13 ‘‘(C) the engagement of the Department of 

14 Health and Human Services with persons that 

15 participate at the public meetings required by 

16 paragraph (5); and 

17 ‘‘(D) the comments received by the Work18 ing Group at such public meetings and the Sec19 retary’s response to such comments; 

20 ‘‘(2) ensure that a broad spectrum of scientific 

21 viewpoints is represented in each such summary; 

22 ‘‘(3) monitor Federal activities with respect to 

23 Lyme disease and other tick-borne diseases; 


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1 ‘‘(4) make recommendations to the Secretary 

2 regarding any appropriate changes to such activities; 

3 and 

4 ‘‘(5) ensure public input by holding annual pub5 lic meetings that address scientific advances, re6 search questions, surveillance activities, and emerg7 ing strains in species of pathogenic organisms. 

8 ‘‘(c) MEMBERSHIP.— 

9 ‘‘(1) IN GENERAL.—The Working Group shall 

10 be composed of a total of 14 members as follows: 

11 ‘‘(A) FEDERAL MEMBERS.—Seven Federal 

12 members, consisting of one or more representa13 tives of each of— 

14 ‘‘(i) the Office of the Assistant Sec15 retary for Health; 

16 ‘‘(ii) the Food and Drug Administra17 tion; 

18 ‘‘(iii) the Centers for Disease Control 

19 and Prevention; 

20 ‘‘(iv) the National Institutes of 

21 Health; and 

22 ‘‘(v) such other agencies and offices of 

23 the Department of Health and Human 

24 Services as the Secretary determines ap25 propriate. 


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1 ‘‘(B) NON-FEDERAL PUBLIC MEMBERS.— 

2 Seven non-Federal public members, consisting 

3 of representatives of the following categories: 

4 ‘‘(i) Physicians and other medical pro5 viders with experience in diagnosing and 

6 treating Lyme disease and other tick-borne 

7 diseases. 

8 ‘‘(ii) Scientists or researchers with ex9 pertise. 

10 ‘‘(iii) Patients and their family mem11 bers. 

12 ‘‘(iv) Nonprofit organizations that ad13 vocate for patients with respect to Lyme 

14 disease and other tick-borne diseases. 

15 ‘‘(v) Other individuals whose expertise 

16 is determined by the Secretary to be bene17 ficial to the functioning of the Working 

18 Group. 

19 ‘‘(2) APPOINTMENT.—The members of the 

20 Working Group shall be appointed by the Secretary, 

21 except that of the non-Federal public members 

22 under paragraph (1)(B)— 

23 ‘‘(A) one shall be appointed by the Speaker 

24 of the House of Representatives; and 


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1 ‘‘(B) one shall be appointed by the Major2 ity Leader of the Senate. 

3 ‘‘(3) DIVERSITY OF SCIENTIFIC PERSPEC4 TIVES.—In making appointments under paragraph 

5 (2), the Secretary, the Speaker of the House of Rep6 resentatives, and the Majority Leader of the Senate 

7 shall ensure that the non-Federal public members of 

8 the Working Group represent a diversity of scientific 

9 perspectives. 

10 ‘‘(4) TERMS.—The non-Federal public members 

11 of the Working Group shall each be appointed to 

12 serve a 4-year term and may be reappointed at the 

13 end of such term. 

14 ‘‘(d) MEETINGS.—The Working Group shall meet as 

15 often as necessary, as determined by the Secretary, but 

16 not less than twice each year. 

17 ‘‘(e) APPLICABILITY OF FACA.—The Working Group 

18 shall be treated as an advisory committee subject to the 

19 Federal Advisory Committee Act. 

20 ‘‘(f) REPORTING.—Not later than 24 months after 

21 the date of enactment of this part, and every 24 months 

22 thereafter, the Working Group— 

23 ‘‘(1) shall submit a report on its activities, in24 cluding an up-to-date summary under subsection 

25 (b)(1) and any recommendations under subsection 


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1 (b)(4), to the Secretary, the Committee on Energy 

2 and Commerce of the House of Representatives, and 

3 the Committee on Health, Education, Labor and 

4 Pensions of the Senate; 

5 ‘‘(2) shall make each such report publicly avail6 able on the website of the Department of Health and 

7 Human Services; and 

8 ‘‘(3) shall allow any member of the Working 

9 Group to include in any such report minority views. 

10 ‘‘SEC. 399OO–2. STRATEGIC PLAN. 

11 ‘‘Not later than 3 years after the date of enactment 

12 of this section, and every 5 years thereafter, the Secretary 

13 shall submit to the Congress a strategic plan, informed 

14 by the most recent summary under section 399OO– 

15 1(b)(1), for the conduct and support of Lyme disease and 

16 tick-borne disease research, including— 

17 ‘‘(1) proposed budgetary requirements; 

18 ‘‘(2) a plan for improving outcomes of Lyme 

19 disease and other tick-borne diseases, including 

20 progress related to chronic or persistent symptoms 

21 and chronic or persistent infection and co-infections; 

22 ‘‘(3) a plan for improving diagnosis, treatment, 

23 and prevention; 


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1 ‘‘(4) appropriate benchmarks to measure 

2 progress on achieving the improvements described in 

3 paragraphs (2) and (3); and 

4 ‘‘(5) a plan to disseminate each summary under 

5 section 399OO–1(b)(1) and other relevant informa6 tion developed by the Working Group to the public, 

7 including health care providers, public health depart8 ments, and other relevant medical groups.’’. 

9 SEC. 3. NO ADDITIONAL AUTHORIZATION OF APPROPRIA10 TIONS. 

11 No additional funds are authorized to be appro12 priated to carry out this Act and the amendment made 

13 by this Act, and this Act and such amendment shall be 

14 carried out using amounts otherwise available for such 

15 purpose. 

Æ 


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